research paper internet ethics

Internet Research Ethics and Social Media

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• Charles Melvin Ess 2  

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Internet research ethics (IRE) is introduced via a historical overview of its development by the Association of Internet Researchers’ ethics committees (2002, 2012, 2020) and the Norwegian Research Ethics Committees (2003, 2006, [2018] 2019). These overlapping but importantly distinctive guidelines foreground key norms and principles (starting with human autonomy and dignity), ethical frameworks (utilitarianism, deontology, virtue ethics, feminist ethics, care ethics), and prevailing, especially question-oriented approaches to identifying and resolving representative ethical challenges in internet research. Comparing and contrasting these (and other relevant) guidelines further introduce us to additional central elements of assumptions regarding personhood and moral agency (individual vis-à-vis relational); respecting and incorporating diverse national/cultural ethical traditions and norms by way of an ethical pluralism ; the role of dialogical, process approaches and reflective ethical judgment ( phronēsis ); interweaving ethics and methods; and considering ethical challenges characteristic of distinct stages of research. Two challenges evoked by Big Data research techniques are examined, beginning with the possibilities and limitations of informed consent and researchers’ possible use of “gray data” (personal information that is hacked and thus made public and available to researchers). Current and future challenges cluster about protecting both researchers’ and subjects’ privacy – specifically, privacy as now reconceptualized in terms of contextual integrity as appropriate to the more relational selves facilitated especially by social media – in an emerging Internet of Things (IoT).

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Ess, C.M. (2020). Internet Research Ethics and Social Media. In: Iphofen, R. (eds) Handbook of Research Ethics and Scientific Integrity. Springer, Cham. https://doi.org/10.1007/978-3-030-16759-2_12

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Internet Research Ethics

There is little research that is not impacted in some way on or through the Internet. The Internet, as a field, a tool, and a venue, has specific and far reaching ethical issues. Internet research ethics is a subdiscipline that fits across many disciplines, ranging from social sciences, arts and humanities, medical/biomedical, and hard sciences. Extant ethical frameworks, including consequentialism , utilitarianism , deontology , virtue ethics , and feminist ethics have contributed to the ways in which ethical issues in Internet research are considered and evaluated.

Conceptually and historically, Internet research ethics is related to computer and information ethics computer and information ethics ) pdf include--> and includes such ethical issues as participant knowledge and consent, data privacy, security, confidentiality, and integrity of data, intellectual property issues, and community, disciplinary, and professional standards or norms. Throughout the Internet’s evolution, there has been debate whether there are new ethical dilemmas emerging, or if the existing dilemmas are similar to dilemmas in other research realms or despite technological influence (Elgesem 2002; Walther 2002; Ess & AoIR 2002; Marhkam & Buchanan, 2012). These debates are similar to philosophical debates in computer and information ethics. For example, many years ago, James Moor (1985) asked “what is special about computers” in order to understand what, if anything, is unique ethically. Today, the same question applies to Internet research (Ess & AoIR 2002; King 1996).

Yet, as the Internet has evolved into a more social and communicative tool and venue, the ethical issues have shifted from purely data driven to more human-centered. “On-ground” or face-to-face analogies, however, may not be applicable to online research. For example, the concept of the public park has been used as a site where researchers might observe others with little ethical controversy, but online, the concepts of public versus private are much more complex. Thus, some scholars suggest that the specificity of Internet research ethics calls for new regulatory and/or professional and disciplinary guidance. For these reasons, the concept of human subjects research policy and regulation informs this entry, along with disciplinary standards, which will explore the growing areas of ethical and methodological complexity, including personal identifiability, reputational risk and harm, notions of public space and public text, ownership, and longevity of data as they relate to Internet research. Specifically, the emergence of the social web raises issues around subject or participant recruitment practices, tiered informed consent models, and protection of various expectations and forms of privacy in an ever-increasing world of diffused and ubiquitous technologies; anonymity and confidentiality of data in spaces where researchers and their subjects may not fully understand the terms and conditions of those venues or tools; challenges to data integrity as research projects can be outsourced or crowdsourced to online labor marketplaces; and jurisdictional issues as more research is processed, stored, and disseminated via cloud computing or in remote server locales, presenting myriad legal complexities given jurisdictional differences in data laws. Further, the emergence of big data research has grown and has become the next discrete phase of Internet research, following social media and social computing.

As a result, researchers using the Internet as a tool for and/or a space of research—and their research ethics boards (REBs), also known as institutional review boards (IRBs) in the United States or human research ethics committees (HRECs) in other countries such as Australia—have been confronted with a series of new ethical questions: What ethical obligations do researchers have to protect the privacy of subjects engaging in activities in “public” Internet spaces? What are such public spaces? Is there any reasonable expectation of privacy in an era of pervasive and ubiquitous surveillance and data tracking? How is confidentiality or anonymity assured online? How is and should informed consent be obtained online? How should research on minors be conducted, and how do you prove a subject is not a minor? Is deception (pretending to be someone you are not, withholding identifiable information, etc) online a norm or a harm? How is “harm” possible to someone existing in an online space? How identifiable are individuals in large data sets? Do human subjects protections apply to big data? As more industry-sponsored research takes place, what ethical protections exist outside of current regulatory structures?

A growing number of scholars have explored these and related questions (see, for example, Bromseth 2002; Bruckman 2006; Buchanan 2004; Buchanan & Ess 2008; Johns, Chen & Hall 2003; Kitchin 2003, 2008; King 1996; Mann 2003; Markham & Baym 2008; McKee & Porter 2009; Thorseth 2003; Ess 2016; Zimmer & Kinder-Kurlanda, forthcoming), scholarly associations have drafted ethical guidelines for Internet research (Ess & Association of Internet Researchers 2002; Markham, Buchanan, and AoIR, 2012; Kraut et al. 2004), and non-profit scholarly and scientific agencies such as AAAS (Frankel & Siang 1999) have begun to confront the myriad of ethical concerns that Internet research poses to researchers and research ethics boards (REBs).

1. Definitions

2. human subjects research, 3. history and development of ire as a discipline, 4.1 privacy, 4.2 recruitment, 4.3 informed consent, 4.4 cloud computing and research ethics.

• 4.5 Big Data Research
• 4.6 Internet Research Ethics and Industry-Conducted Research

5. Research Ethics Boards Guidelines

Other internet resources, related entries.

The commonly accepted definition of Internet research ethics (IRE) has been used by Buchanan and Ess (2008, 2009), Buchanan (2010), and Ess & Association of Internet Researchers (AoIR) (2002):

IRE is defined as the analysis of ethical issues and application of research ethics principles as they pertain to research conducted on and in the Internet. Internet-based research, broadly defined, is research which utilizes the Internet to collect information through an online tool, such as an online survey; studies about how people use the Internet, e.g., through collecting data and/or examining activities in or on any online environments; and/or, uses of online datasets, databases, or repositories.

These examples were broadened in 2012 by the United States Secretary’s Advisory Committee to the Office for Human Research Protections, and included under the umbrella term Internet Research:

• Research studying information that is already available on or via the Internet without direct interaction with human subjects (harvesting, mining, profiling, scraping, observation or recording of otherwise-existing data sets, chat room interactions, blogs, social media postings, etc.)
• Research that uses the Internet as a vehicle for recruiting or interacting, directly or indirectly, with subjects (Self-testing websites, survey tools, Amazon Mechanical Turk, etc.)
• Research about the Internet itself and its effects (use patterns or effects of social media, search engines, email, etc.; evolution of privacy issues; information contagion; etc.)
• Research about Internet users: what they do, and how the Internet affects individuals and their behaviors Research that utilizes the Internet as an interventional tool, for example, interventions that influence subjects’ behavior
• Others (emerging and cross-platform types of research and methods, including m-research (mobile))
• Recruitment in or through Internet locales or tools, for example social media, push technologies

A critical distinction in the definition of Internet research ethics is that between the Internet as a research tool versus a research venue. The distinction between tool and venue plays out across disciplinary and methodological orientations. As a tool, Internet research is enabled by search engines, data aggregators, databases, catalogs, and repositories, while venues include such places or locales as conversation applications (IM/chat rooms, for example), MUDs, MOOs, MMORPGs, (forms of role-playing games, virtual worlds) newsgroups, home pages, blogs, micro-blogging (i.e., Twitter), RSS feeds, crowdsourcing applications, or online course software.

Another way of conceptualizing the distinction between tool and venue comes from Kitchin (2008), who has referred to a distinction in Internet research using the concepts of “engaged web-based research” versus “non-intrusive web-based research:” “Non-intrusive analyses refer to techniques of data collection that do not interrupt the naturally occurring state of the site or cybercommunity, or interfere with premanufactured text. Conversely, engaged analyses reach into the site or community and thus engage the participants of the web source” (p. 15). These two constructs provide researchers with a way of recognizing when considering of human subject protections might need to occur. McKee and Porter (2009), as well as Banks and Eble (2007) provide guidance on the continuum of human-subjects research, noting a distinction between person-based versus text-based. For example, McKee and Porter provide a range of research variables (public/private, topic sensitivity, degree of interaction, and subject vulnerability) which are useful in determining where on the continuum of text-based versus how person-based the research is, and whether or not subjects would need to consent to the research (pp. 87–88).

While conceptually useful for determining human subjects participation, the distinction between tool and venue or engaged versus non-intrusive web-based research is increasingly blurring in the face of social media and their third party applications. Buchanan (2016) has conceptualized three phases or stages of Internet research, and the emergence of social media characterize the second phase, circa 2006-2014. The concept of social media entails “A group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, and that allow the creation and exchange of user-generated content” (Kaplan & Haenlein 2010). A “social network site” is a category of websites with profiles, semi-persistent public commentary on the profile, and a traversable publicly articulated social network displayed in relation to the profile.

This collapse of tool and venue can be traced primarily to the increasing use of third party sites and applications such as Facebook, Google+, or any of the myriad online survey tools where subject or participant recruitment, data collection, data analysis, and data dissemination can all occur in the same space. Gilbert (2009) has specifically argued against the terms of use or end user license agreement stipulations in virtual worlds, noting that such agreements are often “flawed,” as they rely on laws and regulations from a specific locale and attempt to enforce them in a non place-based environment. The terms of “inter-jurisdictional coordination” (p. 3) are inherently challenging. Nonetheless, researchers now make frequent use of data aggregation tools, scraping data from user profiles or transaction logs, harvesting data from Twitter streams, or storing data on cloud servers such as Dropbox, only after agreeing to the terms of service that go along with those sites. The use of such third party applications or tools changes fundamental aspects of research, and are unique characteristics of Internet research at this time. These unique characteristics implicate concepts and practicalities of privacy, consent, ownership, jurisdictional boundaries, and recruitment measures.

A key moment that typified and called attention to many of these concerns emerged with the 2014 Facebook Emotional Contagion study. By virtue of agreeing to Facebook’s Terms of Service, did users consent to participation in research activities? Should there have been a debriefing after the experiment? How thoroughly did a university research ethics board review the study? Should industry-sponsored research undergo internal ethics review? In response to the outcry of the Contagion study, Ok Cupid’s Christian Rudder (2014) defended these sorts of experiments, noting “We noticed recently that people didn’t like it when Facebook ‘experimented’ with their news feed. Even the FTC is getting involved. But guess what, everybody: if you use the Internet, you’re the subject of hundreds of experiments at any given time, on every site. That’s how websites work.”

The phenomenon of the social web forces an ongoing negotiation between researchers and their data sources or human subjects, as seen in the Facebook contagion study and the subsequent reaction to it. Moreover, with the growing use and concentration of mobile devices, the notion of Internet research is expanding with a movement away from a “place-based” Internet to a dispersed reality. Data collection from mobile devices is on the increase. For example, mobile devices enable the use of synchronous data collection and dissemination from non-place based environments. Researchers using cloud-enabled applications can send and receive data to and from participants synchronously. The impact of such research possibilities for epidemiological research (Leibovici et al. 2010) to community-based participatory research (Parras et al. 2011) is staggering for its scientific potential while demanding for the concurrent ethical challenges. Many of these challenges require a careful consideration of traditional notions of human subjects research and how Internet research pushes the boundaries of these notions.

The practical, professional, and theoretical implications of human subjects protections has been covered extensively in scholarly literature, ranging from medical/biomedical to social sciences to computing and technical disciplines (see Beauchamp & Childress 2008; Emanual et al. 2003; Sieber 1992 and forthcoming; Wright 2006). Relevant protections and regulations continue to receive much attention in the face of research ethics violations (see, for example, Skloot 2010, on Henrietta Lacks; the U.S. Government’s admission and apology to the Guatemalan Government for STD testing in the 1940s; and Gaw & Burns 2011, on how lessons from the past might inform current research ethics and conduct).

The history of human subjects protections (Sparks 2002—see Other Internet Resources) grew out of atrocities such as Nazi human experimentation during World War II, which resulted in the Nuremberg Code, in 1947; subsequently followed by the Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects (World Medical Association 1964/2008). In response to the Tuskegee syphilis experiment, an infamous clinical study conducted between 1932 and 1972 by the U.S. Public Health Service studying the natural progression of untreated syphilis in rural African-American men in Alabama under the guise of receiving free health care from the government, the U.S. Department of Health and Human Services put forth a set of basic regulations governing the protection of human subjects (45 C.F.R. § 46), followed by the publication of the “Ethical Principles and Guidelines for the Protection of Human Subjects of Research” by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, known as the Belmont Report (NCPHSBBR 1979). The Belmont Report identifies three fundamental ethical principles for all human subjects research: Respect for Persons, Beneficence, and Justice.

To ensure consistency across federal agencies in the United States context in human subjects protections, in 1991, the Federal Policy for the Protection of Human Subjects, also known as the “Common Rule” was codified. Similar regulatory frameworks protecting human subjects have emerged across the world, including the Canadian Tri-Council, the Australian Research Council, The European Commission, The Research Council of Norway and its National Committee for Research Ethics in the Social Sciences and Humanities (NESH 2006; NESH 2014), and the U.K.’s NHS National Research Ethics Service and the Research Ethics Framework (REF) of the ESRC (Economic and Social Research Council) General Guidelines, and the Forum for Ethical Review Committees in Asia and the Western Pacific (FERCAP).

To date, the various U.S. regulatory agencies bound by the Common Rule have not issued formal guidance on Internet research. Similarly, few regulatory bodies in other countries have changed or redefined their regulations because of, or in light of, Internet research. However, guidelines for researcher and reviewer considerations have begun to emerge globally. Despite regional and cultural difference, Buchanan (2010) has outlined the similarities in the mission, scope, and intentions the REBs globally, predominantly around shared notions of risk and harm, justice, and respect for persons.

While stopping short of regulatory guidance, many research ethics boards are exploring the ways in which Internet research complicates traditional models of human subjects protections can be, or are, applied. For example, the United States Department of Health and Human Services (DHHS) and the Office for Human Research Protections (OHRP) operate with the following definition of human subjects (45 C.F.R. § 46.102(f) 2009).

Human subject means a living individual about whom an investigator (whether professional or student) conducting research obtains data through intervention or interaction with the individual, or identifiable private information. Intervention includes both physical procedures by which data are gathered (for example, venipuncture) and manipulations of the subject or the subject’s environment that are performed for research purposes. Interaction includes communication or interpersonal contact between investigator and subject. Private information includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information which has been provided for specific purposes by an individual and which the individual can reasonably expect will not be made public (for example, a medical record). Private information must be individually identifiable (i.e., the identity of the subject is or may readily be ascertained by the investigator or associated with the information) in order for obtaining the information to constitute research involving human subjects (OHRP, 2008).

Two novel notions entering human subjects discourse include “human non-subjects research” and “human harming research.” Brothers and Clayton (2010) propose human non-subjects as a conceptual category, not as a replacement of regulatory language but as another category for research review considerations. Human non-subjects research is emerging in light of technological advancements and research development which uses deidentified information on humans, for example, genetic data, or discrete variables from a data set, specifically in the contexts of tissue banking or deidentified data in repositories that are used for other research beyond when the samples or data were first collected. An individual may have consented to the original research, say, in a clinical trial, in such cases, reconsent may be impossible, yet the samples may still pose reidentification risks to humans. For instance, as data sets are shared, data may be scrubbed to remove all identifiers, or some identifiers may be kept with the data or the data custodian. Rothstein (2010) agrees, with a clear eye to privacy and risk: “The use of deidentified health information and biological specimens in research creates a range of privacy and other risks to individuals and groups. The current regulatory system, under which privacy protections are afforded identifiable information but no protections apply to deidentified information, needs to be revised” (p. 3). O’Rourke (2007) has provided guidance on the use of human specimens and banking, which could be adapted to other forms of data banking.

Carpenter and Dittrich (2011) and Aycock et al. (2012) refer to the notion of “human-harming research” as a variable in human subjects review in Internet, or more specifically, computer science or information/communication technology (ICT) research. Carpenter and Dittrich encourage

Review boards [to] transition from an informed consent driven review to a risk analysis review that addresses potential harms stemming from research in which a researcher does not directly interact with the at-risk individuals….[The] distance between researcher and affected individual indicates that a paradigm shift is necessary in the research arena. We must transition our idea of research protection from “human subjects research” to “human harming research.” [ 1 ]

Similarly, Aycock et al. (2012) assert that

Researchers and boards must balance presenting risks related to the specific research with risks related to the technologies in use. With computer security research, major issues around risk arise, for society at large especially. The risk may not seem evident to an individual but in the scope of security research, larger populations may be vulnerable. There is a significant difficulty in quantifying risks and benefits, in the traditional sense of research ethics….An aggregation of surfing behaviors collected by a bot presents greater distance between researcher and respondent than an interview done in a virtual world between avatars. This distance leads us to suggest that computer security research focus less concern around human subjects research in the traditional sense and more concern with human harming research. (italics original)

These two conceptual notions are relevant for considering emergent forms of identities or personally identifiable information (PII) such as avatars, virtual beings, bots, textual and graphical information. Within the Code of Federal Regulations (45 C.F.R. § 46.102(f) 2009): New forms of representations are considered human subjects if PII about living individuals is obtained. PII can be obtained by researchers through scraping data sources, profiles or avatars, or other pieces of data made available by the human “behind the avatar or other representation” (Odwazny & Buchanan 2011). Fairfield agrees: “An avatar, for example, does not merely represent a collection of pixels—it represents the identity of the user” (2012, p. 701)

The multiple disciplines already long engaged in human subjects research (medicine, sociology, anthropology, psychology, communication) have established ethical guidelines intended to assist researchers and those charged with ensuring that research on human subjects follows both legal requirements and ethical practices. But with research involving the Internet—where individuals increasingly share personal information on platforms with porous and shifting boundaries, where both the spread and aggregation of data from disparate sources is increasingly the norm, and where web-based services, and their privacy policies and terms of service statements, morph and evolve rapidly—the ethical frameworks and assumptions traditionally used by researchers and REBs are frequently challenged.

At the time of this revision, the Department of Health and Human Services has been working on a revision to the Common Rule. The Notice of Proposed Rule Making includes revisions to categories of research, consent, and data security, among other changes that affect research in the social-behavioral-educational and biomedical realms.

An extensive body of literature has developed since the 1990s around the use of the Internet for research (Jones 1999; Hunsinger, Klastrup & Allen 2010; Consalvo & Ess 2010), with a growing emphasis on the ethical dimensions of Internet research.

A flurry of Internet research, and explicit concern for the ethical issues concurrently at play in it, began in the mid 1990s. In 1996, Storm King recognized the growing use of the Internet as a venue for research. His work explored the American Psychological Association’s guidelines for human subjects research with emergent forms of email, chat, listservs, and virtual communities. With careful attention to risk and benefit to Internet subjects, King offered a cautionary note:

When a field of study is new, the fine points of ethical considerations involved are undefined. As the field matures and results are compiled, researchers often review earlier studies and become concerned because of the apparent disregard for the human subjects involved. (King 1996,119)

The 1996 issue of Information Society dedicated to Internet research is considered a watershed moment, and included much seminal research, still of impact and relevance today (Allen 1996; Boehlefeld 1996; Reid 1996).

Sherry Turkle’s 1997 Life on the Screen: Identity in the Age of the Internet called direct attention to the human element of online game environments. Moving squarely towards person-based versus text-based research, Turkle pushed researchers to consider human subjects implications of Internet research. Similarly, Markham’s Life Online: Researching Real Experience in Virtual Space (1998) highlighted methodological complexities of online ethnographic studies, as did Jacobson’s 1999 methodological treatment of Internet research. The “field” of study changed the dynamics of researcher-researched roles, identity, and representation of participants from virtual spaces. Markham’s work in qualitative online research has been influential across disciplines, as research in nursing, psychology, and medicine has found the potential of this paradigm for online research (Flicker et al. 2004; Esyenbach & Till 2001; Seaboldt & Kupier 1997; Sharf 1996;).

Then, in 1999, the American Association for the Advancement of Science (AAAS), with a contract from the U.S. Office for Protection from Research Risks (now known as the Office for Human Research Protections), convened a workshop, with the goal of assessing the alignment of traditional research ethics concepts to Internet research. The workshop acknowledged

The vast amount of social and behavioral information potentially available on the Internet has made it a prime target for researchers wishing to study the dynamics of human interactions and their consequences in this virtual medium. Researchers can potentially collect data from widely dispersed population sat relatively low cost and in less time than similar efforts in the physical world. As a result, there has been an increase in the number of Internet studies, ranging from surveys to naturalistic observation. (Frankel & Siang 1999)

In the medical/biomedical contexts, Internet research is growing rapidly. Also in 1999, Gunther Eysenbach wrote the first editorial to the newly formed Journal of Medical Internet Research . There were three driving forces behind the inception of this journal, and Eysenbach calls attention to the growing social and interpersonal aspects of the Internet:

First, Internet protocols are used for clinical information and communication. In the future, Internet technology will be the platform for many telemedical applications. Second, the Internet revolutionizes the gathering, access and dissemination of non-clinical information in medicine: Bibliographic and factual databases are now world-wide accessible via graphical user interfaces, epidemiological and public health information can be gathered using the Internet, and increasingly the Internet is used for interactive medical education applications. Third, the Internet plays an important role for consumer health education, health promotion and teleprevention. (As an aside, it should be emphasized that “health education” on the Internet goes beyond the traditional model of health education, where a medical professional teaches the patient: On the Internet, much “health education” is done “consumer-to-consumer” by means of patient self support groups organizing in cyberspace. These patient-to-patient interchanges are becoming an important part of healthcare and are redefining the traditional model of preventive medicine and health promotion).

With scholarly attention growing and with the 1999 AAAS report calling for action, other professional associations took notice and began drafting statements or guidelines, or addendum to their extant professional standards. For example, The Board of Scientific Affairs (BSA) of the American Psychological Association established an Advisory Group on Conducting Research on the Internet in 2001; the American Counseling Association’s 2005 revision to its Code of Ethics; the Association of Internet Researchers (AoIR) Ethics Working Group Guidelines, The National Committee for Research Ethics in the Social Sciences and the Humanities Research Ethics Guidelines for Internet Research, among others, have directed researchers and review boards to the ethics of Internet research, with attention to the most common areas of ethical concern (see Other Internet References for links).

While many researchers focus on traditional research ethics principles, conceptualizations of Internet research ethics depend on disciplinary perspectives. Some disciplines, notably from the arts and humanities, posit that Internet research is more about context and representation than about “human subjects,” suggesting there is no intent, and thus minimal or no harm, to engage in research about actual persons. The debate has continued since the early 2000s. White (2002) argued against extant regulations that favored or privileged specific ideological, disciplinary and cultural prerogatives, which limit the freedoms and creativity of arts and humanities research. For example, she notes that the AAAS report “confuses physical individuals with constructed materials and human subjects with composite cultural works,” again calling attention to the person versus text divide that has permeated Internet research ethics debates. Another example of disciplinary differences comes from the Oral History Association, which acknowledged the growing use of the Internet as a site for research:

Simply put, oral History collects memories and personal commentaries of historical significance through recorded interviews. An oral history interview generally consists of a well-prepared interviewer questioning an interviewee and recording their exchange in audio or video format. Recordings of the interview are transcribed, summarized, or indexed and then placed in a library or archives. These interviews may be used for research or excerpted in a publication, radio or video documentary, museum exhibition, dramatization or other form of public presentation. Recordings, transcripts, catalogs, photographs and related documentary materials can also be posted on the Internet. (Ritchie 2003, 19)

While the American Historical Association (Jones 2008) has argued that such research be “explicitly exempted” from ethical review board oversight, the use of the Internet could complicate such a stance if such data became available in public settings or available “downstream” with potential, unforeseeable risks to reputation, economic standing, or psychological harm, should identification occur.

Under the concept of text rather than human subjects, Internet research rests on arguments of publication and copyright; consider the venue of a blog, which does not meet the definition of human subject as in 45 C.F.R. § 46.102f (2009), as interpreted by most ethical review boards. A researcher need not obtain consent to use text from a blog, as it is generally considered publicly available, textual, published material. This argument of the “public park” analogy that has been generally accepted by researchers is appropriate for some Internet venues and tools, but not all: Context, intent, sensitivity of data, and expectations of Internet participants were identified in 2004 by Sveninngsson as crucial markers in Internet research ethics considerations.

By the mid 2000s, with three major anthologies published, and a growing literature base, there was ample scholarly literature documenting IRE across disciplines and methodologies, and subsequently, there was anecdotal data emerging from the review boards evaluating such research. In search of empirical data regarding the actual review board processes of Internet research from a human subjects perspective, Buchanan and Ess surveyed over 700 United States ethics review boards, and found that boards were primarily concerned with privacy, data security and confidentiality, and ensuring appropriate informed consent and recruitment procedures (Buchanan and Ess 2009; Buchanan and Hvizdak 2009).

In 2008, the Canadian Tri-Council’s Social Sciences and Humanities Research Ethics Special Working Committee: A Working Committee of the Interagency Advisory Panel on Research Ethics was convened (Blackstone et al. 2008) ; and in 2010, a meeting at the Secretary’s Advisory Committee to the Office for Human Research Protections highlighted Internet research (SACHRP 2010). Such prominent professional organizations as the Public Responsibility in Medicine and Research (PRIM&R) and the American Educational Research Association (AERA) have begun featuring Internet research ethics regularly at their conferences and related publications.

Recently, disciplines not traditionally involved in human subjects research have begun their own explorations of IRE. For example, researchers in computer security are actively examining the tenets of research ethics in CS and ICT (Aycock et al. 2012; Dittrich, Bailey, Dietrich 2011; Carpenter & Dittrich 2011; Buchanan et al. 2011). Notably, the U.S. Federal Register requested comments on “The Menlo Report” in January 2012, which calls for a commitment by computer science researchers to the three principles of respect for persons, beneficence, and justice, while also adding a fourth principle on respect for law and public interest (Homeland Security 2011).

4. Key Ethical Issues in Internet Research

Principles of research ethics dictate that researchers must ensure there are adequate provisions to protect the privacy of subjects and to maintain the confidentiality of any data collected. A violation of privacy or breach of confidentiality presents a risk of serious harm to participants, ranging from the exposure of personal or sensitive information, the divulgence of embarrassing or illegal conduct, or the release of data otherwise protected under law.

Research ethics regulations express concern over subject privacy in terms of the level of linkability of data to individuals, and the potential harm disclosure of information could pose. For example, when discussing the possible exemption of certain research from human subject review, federal guidelines require oversight in these circumstances:

(i) information obtained is recorded in such a manner that human subjects can be identified, directly or through identifiers linked to the subjects; and (ii) any disclosure of the human subjects’ responses outside the research could reasonably place the subjects at risk of criminal or civil liability or be damaging to the subjects’ financial standing, employability, or reputation (45 C.F.R. § 46.101(b)(2) 2009).

The protection of privacy and confidentiality is typically achieved through a combination of research tactics and practices, including engaging in data collection under controlled or anonymous environments, the scrubbing of data to remove personally identifiable information (PII), or the use of access restrictions and related data security methods.

Compliance with federal guidelines also rests on the definition of what kind of data are considered PII, and therefore triggering special privacy considerations. The National Institutes of Health (NIH), for example, defines PII as follows:

any information about an individual maintained by an agency, including, but not limited to, education, financial transactions, medical history, and criminal or employment history and information which can be used to distinguish or trace an individual’s identity, such as their name, SSN, date and place of birth, mother’s maiden name, biometric records, etc., including any other personal information that is linked or linkable to an individual. (NIH 2008)

Typically, examples of identifying pieces of information have included personal characteristics (such as date of birth, place of birth, mother’s maiden name, gender, sexual orientation, and other distinguishing features and biometrics information, such as height, weight, physical appearance, fingerprints, DNA and retinal scans), unique numbers or identifiers assigned to an individual (such as a name, address, phone number, social security number, driver’s license number, financial account numbers), and descriptions of physical location (GIS/GPS log data, electronic bracelet monitoring information).

Internet research introduces new complications to these longstanding definitions and regulatory frameworks intended to protect subject privacy. For example, researchers increasingly are able continue to collect detailed data about individuals from sources such as Facebook, Twitter, blogs or public email archives, and these rich data sets can more easily be processed, compared, and combined with other data (and datasets) available online. In various cases, researchers (and sometimes even amateurs) have been able to re-identify individuals by analyzing and comparing such datasets, using data-fields as benign as one’s zip code (Sweeny 2002), random Web search queries (Barbaro & Zeller 2006), or movie ratings (Narayanan & Shmatikov 2008) as the vital key for reidentification of a presumed anonymous user. Prior to widespread Internet-based data collection and processing, few would have considered one’s movie ratings or zip code as personally-identifiable. Yet, these cases reveal that merely stripping traditional “identifiable” information such as a subject’s name, address, or social security number is no longer sufficient to ensure data remains anonymous (Ohm 2009), and requires the reconsideration of what is considered “personally identifiable information” (Schwartz & Solove 2011). This points to the critical distinction between data which is kept confidential versus data that is truly anonymous. Increasingly, data are rarely completely anonymous, as researchers have routinely demonstrated they can often reidentify individuals hidden in “anonymized” datasets with ease (Ohm 2009). This reality places new pressure on ensuring datasets are kept, at the least, suitably confidential through both physical and computational security measures.

Similarly, new types of data often collected in Internet research might also be used to identify a subject within a previously-assumed anonymous dataset. For example, Internet researchers might also collect Internet Protocol (IP) addresses when conducting online surveys or analyzing transaction logs. An IP address is a unique identifier that is assigned to every device connected to the Internet; in most cases, individual computers are assigned a unique IP address, while in some cases the address is assigned to a larger node or Internet gateway for a collection of computers. Nearly all websites and Internet service providers store activity logs that link activity with IP address, in many cases, eventually to specific computers or users. Current U.S. law does not hold IP addresses to be personally identifiable information, while other countries and regulatory bodies do. For example, the European Data Privacy Act at Article 29, holds that IP addresses do constitute PII. Buchanan et al. (2011), note, however, that under the U.S. Civil Rights Act, for the purposes of the HIPAA Act, [ 2 ] IP addresses are considered a form of PII (45 C.F.R. § 164.514 2002). [ 3 ] There could potentially be a reconsideration by other federal regulatory agencies over IP addresses as PII, and researchers and boards will need to be attentive should such change occur.

A similar complication emerges when we consider the meaning of “private information” within the context of Internet-based research. Federal regulations define “private information” as:

[A]ny information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information that has been provided for specific purposes by an individual and that the individual can reasonably expect will not be made public (for example, a medical record) (45 C.F.R. § 46.102(f) 2009).

This standard definition of “private information” has two key components. First, private information is that which subjects reasonably expect is not normally monitored or collected. Second, private information is that which subjects reasonable expect is not normally publicly available. Conversely, the definition also suggests the opposite is true: if users cannot reasonably expect data isn’t being observed or recorded, or they cannot expect data isn’t publicly available, then the data does not rise to the level of “private information” requiring particular privacy protections. Researchers and REBs have routinely worked with this definition of “private information” to ensure the protection of subject privacy.

These distinctions take on greater weight, however, when considering the data environments and collection practices common with Internet-based research. Researchers interested in collecting or analyzing online actions of subjects—perhaps through the mining of online server logs, the use of tracking cookies, or the scraping of social media profiles and feeds—could argue that subjects do not have a reasonable expectation that such online activities are not routinely monitored since nearly all online transactions and interactions are routinely logged by websites and service providers. Thus, online data trails might not rise to the level of “private information”. However, numerous studies have indicated that average Internet users have incomplete understandings of how their activities are routinely tracked, and the related privacy practices and policies of the sites they visit (Hoofnagle & King 2009; Milne & Culnan 2004; Tsai et al. 2006). Hudson and Bruckman (2005) conducted empirical research on users’ expectations and understandings of privacy, finding that participants’ expectations of privacy within public chatrooms conflicted with what was actually a very public online space. Rosenberg (2010) examined the public/private distinction in the realm of virtual worlds, suggesting researchers must determine what kind of social norms and relations predominate an online space before making assumptions about the “publicness” of information shared within. Thus, it remains unclear whether Internet users truly understand if and when their online activity is regularly monitored and tracked, and what kind of reasonable expectations truly exist. This ambiguity creates new challenges for researchers and REBs when trying to apply the definition of “private information” to ensure subject privacy is properly addressed (Zimmer 2010).

This complexity in addressing subject privacy in Internet research is further compounded with the rise of social networking as a place for the sharing of information, and a site for research. Users increasingly share more and more personal information on platforms like Facebook, MySpace, or Twitter. For researchers, social media platforms provide a rich resource for study, and much of the content is available to be viewed and downloaded with minimal effort. Since much of the information posted to social media sites is publicly viewable, it thus fails to meet the standard regulatory definition of “private information.” Therefore, researchers attempting to collect and analyze social media postings might not treat the data as requiring any particular privacy considerations. Yet, social media platforms represent a complex environment of social interaction where users are often required to place friends, lovers, colleagues, and minor acquaintances within the same singular category of “friends”, where privacy policies and terms of service are not fully understood (Madejski et al. 2011), and where the technical infrastructures fail to truly support privacy projections (Bonneau & Preibush 2009) and regularly change with little notice (Stone 2009; Zimmer 2009, Other Internet Resources). As a result, it is difficult to understand with any certainty what a user’s intention was when posting an item onto a social media platform (Acquisti & Gross 2006). It could be been meant to be visible to only a small circle of friends, but the user failed to completely understand how to adjust the privacy settings accordingly. Or, the information might have previously been restricted to only certain friends, but a change in the technical platform suddenly made the data more visible to all.

Ohm (2010) warns that “the utility and privacy of data are linked, and so long as data is useful, even in the slightest, then it is also potentially reidentifiable” (p. 1751). With the rapid growth of Internet-based research, Ohm’s concern becomes even more dire. The traditional definitions and approaches to understanding the nature of privacy, anonymity, and precisely what kind of information deserves protection becomes strained, forcing researchers and REBs to consider more nuanced theories of privacy (Nissenbaum 2009) and approaches to respecting and projecting subject privacy (Markham 2012; Zimmer 2010).

Depending on the type of Internet research being carried out, recruitment of participants may be done in a number of ways. As with any form of research, the population or participants is selected for specific purposes (i.e., an ethnographic study of a particular group on online game players), or, can be selected from a range of sampling techniques (i.e., a convenience sample gleaned from the users of Amazon’s Mechanical Turk crowdsourcing platform [ 4 ] ). In the U.S. context, a recruitment plan is considered part of the informed consent process, and as such, any recruitment script or posting must be reviewed and approved by an REB prior to posting or beginning solicitation (if the project is human subjects research). Further, selection of participants must be fair, and risks and benefits must be justly distributed. This concept is challenging to apply in Internet contexts, in which populations are often self-selected and can be exclusive, depending on membership and access status, as well as the common disparities of online access based on economic and social variables. Researchers also face recruitment challenges due to online subjects’ potential anonymity, especially as it relates to the frequent use of pseudonyms online, having multiple or alternative identities online, and the general challenges of verifying a subject’s age and demographic information. Moreover, basic ethical principles for approaching and recruiting participants involve protecting their privacy and confidentiality. Internet research can both maximize these protections, as an individual may never be known beyond a screen name or avatar existence; or, conversely, the use of IP addresses, placement of cookies, availability and access to more information than necessary for the research purposes, may minimize the protections of privacy and confidentiality.

Much recruitment is taking place via social media; examples include push technologies, a synchronous approach in which a text or tweet is sent from a researcher to potential participants. Geolocational status through mobile devices and push technology recruitment, in tandem, allow for novel forms of recruitment for such research as in clinical trials. Other methods of pull technologies recruitment include direct email, dedicated web pages, YouTube videos, direct solicitation via “stickies” posted on fora or web sites directing participants to a study site, or data aggregation or scraping data for potential recruitment. Regardless of the means used, researchers must follow the terms of the site—from the specific norms and nuances governing a site or locale to the legal issues in terms of service agreements. For example, early pro-anorexia web sites (see Overbeke 2008) were often treated as sensitive spaces deserving spcicial consideration, and researchers were asked to respect the privacy of the participants and not engage in research (Walstrom 2004). In the gaming context, Reynolds and de Zwart (2010) ask:

Has the researcher disclosed the fact that he or she is engaged in research and is observing/interacting with other players for the purposes of gathering research data? How does the research project impact upon the community and general game play? Is the research project permitted under the Terms of Service?

Colvin and Lanigan (2005, 38) suggest researchers

Seek permission from Web site owners and group moderators before posting recruitment announcements, Then, preface the recruitment announcement with a statement that delineates the permission that has been granted, including the contact person and date received. Identify a concluding date (deadline) for the research study and make every effort to remove recruitment postings, which often become embedded within Web site postings.

Barratt and Lenton (2010), among others, agree:

It is critical, therefore, to form partnerships with online community moderators by not only asking their permission to post the request, but eliciting their feedback and support as well.

Mendelson (2007) and Smith and Leigh (1997) note that recruitment notices need to contain more than the typical flyers or advertisements used for newspaper advertisements. Mentioning the approval of moderators is important for establishing authenticity, and so is providing detailed information about the study and how to contact both the researchers and the appropriate research ethics board.

Given the array of techniques possible for recruitment, the concept of “research spam” requires attention. The Council of American Survey Research warns

Research Organizations should take steps to limit the number of survey invitations sent to targeted respondents by email solicitations or other methods over the Internet so as to avoid harassment and response bias caused by the repeated recruitment and participation by a given pool (or panel) of data subjects. (CASRO 2011, I.B.3)

Ultimately, researchers using Internet recruitment measures must ensure that potential participants are getting enough information in both the recruitment materials and any subsequent consent documents. Researchers must ensure that recruitment methods do not lead to an individual being identified, and if such identification is possible, are there significant risks involved?

As the cornerstone of human subjects protections, informed consent means that participants are voluntarily participating in the research with adequate knowledge of relevant risks and benefits. Providing informed consent typically includes the researcher explaining the purpose of the research, the methods being used, the possible outcomes of the research, as well as associated risks or harms that the participants might face. The process involves providing the recipient clear and understandable explanations of these issues in a concise way, providing sufficient opportunity to consider them and enquire about any aspect of the research prior to granting consent, and ensuring the subject has not been coerced into participating. Gaining consent in traditional research is typically done verbally, either in a face-to-face meeting where the researcher reviews the document, through telephone scripts, through mailed documents, fax, or video, and can be obtained with the assistance of an advocate in the case of vulnerable populations. Most importantly, informed consent was built on the ideal of “process” and the verification of understanding, and thus, requires an ongoing communicative relationship between and among researchers and their participants. The emergence of the Internet as both a tool and a venue for research has introduced challenges to this traditional approach to informed consent.

In most regulatory frameworks, there are instances when informed consent might be waived, or the standard processes of obtaining informed consent might be modified, if approved by a research ethics board. [ 5 ] Various forms of Internet research require different approaches to the consent process. Some standards have emerged, depending on venue (i.e., an online survey platform versus a virtual world island). However, researchers are encouraged to consider waiver of consent and/or documentation, if appropriate, by using the flexibilities of their extant regulations.

Where consent is required but documentation is waived, a “portal” can be used to provide consent information. For example, a researcher may send an email to the participant with a link a separate portal or site information page where information on the project is contained. The participant can read the documentation and click on an “I agree” submission. Rosser et al. (2010) recommend using a “chunked” consent document, whereby individuals can read specific sections, agree, and then continue onwards to completion of the consent form, until reaching the study site.

In addition to portals, researchers will often make use of consent cards or tokens in virtual worlds; this alleviates concerns that unannounced researcher presence is unacceptable, or, that a researcher’s presence is intrusive to the natural flow and movement of a given locale. Hudson and Bruckman (2004, 2005) highlighted the unique challenges in gaining consent in chat rooms, while Lawson (2004) offers an array of consent possibilities for synchronous computer-mediated communication. There are different practical challenges in the consent process in Internet research, given the fluidity and temporal nature of Internet spaces.

If documentation of consent is required, some researchers have utilized alternatives such as electronic signatures, which can range from a simple electronic check box to acknowledge acceptance of the terms to more robust means of validation using encrypted digital signatures, although the validity of electronic signatures vary by jurisdiction.

Regardless of venue, informed consent documents are undergoing a discursive change. While the basic elements of consent remain intact, researchers must now acknowledge with less certainty specific aspects of their data longevity, risks to privacy, confidentiality and anonymity (see Privacy, above ), and access to or ownership of data. Researchers must address and inform participants/subjects about potential risk of data intrusion or misappropriation of data if subsequently made public or available outside of the confines of the original research. Statements should be revised to reflect such realities as cloud storage (see below ) and data sharing.

For example, Aycock et al. (2012, p. 141) describe a continuum of security and access statements used in informed consent documents:

• “No others will have access to the data.”
• “Anonymous identifiers will be used during all data collection and analysis and the link to the subject identifiers will be stored in a secure manner.”
• “Data files that contain summaries of chart reviews and surveys will only have study numbers but no data to identify the subject. The key [linking] subject names and these study identifiers will be kept in a locked file.”
• “Electronic data will be stored on a password protected and secure computer that will be kept in a locked office. The software ‘File Vault’ will be used to protect all study data loaded to portable laptops, flash drives or other storage media. This will encode all data… using Advanced Encryption Standard with 128-bit keys (AES-128)”

This use of encryption in the last statement may be necessary in research including sensitive data, such as medical, sexual, health, financial, and so on. Barratt and Lenton (2010), in their research on illicit drug use and online forum behaviors, also provide guidance about use of secure transmission and encryption as part of the consent process.

In addition to informing participants about potential risks and employing technological protections, U.S.-based researchers working with sensitive biomedical, behavioral, clinical or other types of research, may choose to obtain a Certificate of Confidentiality from the National Institutes of Health, which protects researchers and institutions from being compelled to disclose information that could identify research subjects in civil, criminal, or other legal demands (NIH 2011). However, these do not protect against release of data outside of the U.S. Given the reality of Internet research itself, which inherently spans borders, new models may be in order to ensure confidentiality of data and protections of data. Models of informed consent for traditional international research are fundamentally challenging due to cultural specificity and norms (Annas 2009; Boga et al. 2011; Krodstad et al. 2010); with Internet research, where researchers may be unaware of the specific location of an individual, consent takes on significantly higher demands. While current standards of practice show that consent models stem from the jurisdiction of the researcher and sponsoring research institution, complications arise in the face of age verification, age of majority/consent, reporting of adverse effects or complaints with the research process, and authentication of identity. Various jurisdictional laws around privacy are relevant for the consent process; a useful tool is Forrester’s Data Privacy Heat Map, which relies on in-depth analyses of the data privacy-related laws and cultures of countries around the world, helping researchers design appropriate approaches to privacy and data protection given the particular context (Forrester 2011).

In addition, as more federal agencies and funding bodies across the globe mandate making research data publicly-available (i.e., NSF, NIH, Wellcome Trust, Research Councils U.K.), the language used in consent documents will change accordingly to represent this intended longevity of data and opportunities for future, unanticipated use. This is not an entirely new concept nor is it specific to Internet research, but it should be noted that new language is required for consent.

Given the ease with which Internet data can flow between and among Internet venues (a Twitter feed can automatically stream to a Facebook page), the changes with which access to data can occur (early “private” newsgroup conversations were made “publicly searchable” when Google bought DejaNews), reuse and access by others is highly possible. Current data sharing mandates must be considered in the consent process. Alignment between a data sharing policy and an informed consent document is imperative. Both should include provisions for appropriate protection of privacy, confidentiality, security, and intellectual property.

There is general agreement in the U.S. that individual consent is not necessary for researchers to use publicly available data sets, under 45 C.F.R. § 46; recommendations were made by The National Human Subjects Protection Advisory Committee (NHRPAC) in 2002 regarding publicly available data sets (see Other Internet Resources). Data use or data restriction agreements are commonly used and set the parameters of use for researchers.

The U.K. Data Archive (2012) provides guidance on consent and data sharing:

Restricting access to data should never be seen as the only way to protect confidentiality. Obtaining appropriate informed consent and anonymising data enable most data to be shared: For confidential data, the Archive, in discussion with the data owner, may impose additional access regulations, which can be: needing specific authorisation from the data owner to access data-placing confidential data under embargo for a given period of time until confidentiality is no longer pertinent providing access to approved researchers only providing secure access to data by enabling remote analysis of confidential data but excluding the ability to download data

Data sharing made public headlines in 2016 when a Danish researcher released a data set comprised of scraped data from nearly 70,000 users of the OkCupid online dating site. The data set was highly reidentifiable and included potentially sensitive information, including usernames, age, gender, geographic location, what kind of relationship (or sex) they’re interested in, personality traits, and answers to thousands of profiling questions used by the site. The researcher claimed the data were public and thus, such sharing and use was unproblematic. Zimmer (2016) was among many privacy and ethics scholars who critiqued this stance.

The Danish researchers did not seek any form of consent or debriefing on the collection and use of the data, nor did they have any ethics oversight. Many researchers and ethics boards are, however, starting to mitigate many of these ethical concerns by including blanket statements in their consent processes, indicating such precautions for research participants. For example,

“I understand that online communications may be at greater risk for hacking, intrusions, and other violations. Despite these possibilities, I consent to participate.”

A more specific example comes from the Canadian context when researchers propose to use specific online survey tools hosted in the United States; REBs commonly recommend the following type language for use in informed consent documents:

Please note that the online survey is hosted by Company ABC which is a web survey company located in the U.S.A. All responses to the survey will be stored and accessed in the U.S.A. This company is subject to U.S. Laws, in particular, to the U.S. Patriot Act/Domestic Security Enhancement Act that allows authorities access to the records that your responses to the questions will be stored and accessed in the U.S.A. The security and private policy for Company ABC can be viewed at http://…/. [ 6 ]

Researchers are also encouraged to review the Terms of Use and Terms of Service of the application that are being used, demonstrating its details to the REB in the application and informing participants of such details in the informed consent form or script.

4.3.1 Minors and Consent

Internet research poses particular challenges to age verification, assent and consent procedures, and appropriate methodological approaches with minors. Age of consent varies across countries, states, communities, and locales of all sorts. For research conducted or supported by U.S. federal agencies bound by the Common Rule, children are “persons who have not attained the legal age for consent to treatments or procedures involved in the research, under the applicable law of the jurisdiction in which the research will be conducted” (45 C.F.R. § 46.402(a) 2009). Goldfarb (2008) provides an exhaustive discussion of age of majority across the U.S. states, with a special focus on clinical research , noting children must be seven or older to assent to participation (see 45 C.F.R. § 46 Subpart D 2009).

Spriggs, from the Australian context, notes that while no formal guidance exists on Internet research and minors under the National Statement , she advises:

Parental consent may be needed when information is potentially identifiable. Identifiable information makes risks to individuals higher and may mean that the safety net of parental consent is preferable. There is also a need to consider whether seeking parental consent would make things worse e.g., by putting a young person from a dysfunctional home at risk or result in disclosure to the researcher of additional identifying information about the identity and location of the young person. Parental consent may be “contrary to the best interests” of the child or young person when it offers no protection or makes matters worse. (Spriggs 2010, 30)

To assist with the consent process, age verification measures can be used. These can range from more technical software applications to less formal knowledge checks embedded in an information sheet or consent document. Multiple confirmation points (asking for age, later asking for year of birth, etc) are practical measures for researchers. Depending on the types of data, sensitivity of data, use of data, researchers and boards will carefully construct the appropriate options for consent, including waiver of consent, waiver of documentation, and/or waiver of parental consent.

Recent developments in cloud computing platforms have led to unique opportunities—and ethical challenges—for researchers. Cloud computing describes the deployment of computing resources via the Internet, providing on-demand, flexible, and scalable computing from remote locations. Examples include web-based email and calendaring services provided by Google or Yahoo, online productivity platforms like Google Docs or Microsoft Office 365, online file storage and sharing platforms like Dropbox or Box.net, and large-scale application development and data processing platforms such as Google Apps, Facebook Developers Platform, and Amazon Web Services.

Alongside businesses and consumers, researchers have begun utilizing cloud computing platforms and services to assist in various tasks, including subject recruitment, data collection and storage, large-scale data processing, as well as communication and collaboration (Allan 2011; Chen et al. 2010; Simmhan et al. 2008; Yogesh et al. 2009).

As reliance on cloud computing increases among researchers, so do the ethical implications. Among the greatest concerns is ensuring data privacy and security with cloud-based services. For researchers sharing datasets online for collaborative processing and analysis, steps must be taken to ensure only authorized personnel have access to the online data, but also that suitable encryption is used for data transfer and storage, and that the cloud service provider maintains sufficient security to prevent breaches. Further, once research data is uploaded to a third-party cloud provider, attention must be paid to the terms of service for the contracted provider to determine what level of access to the data, if any, might be allowed to advertisers, law enforcement, or other external agents.

Alongside the privacy and security concerns, researchers also have an ethical duty of data stewardship which is further complicated when research data is placed in the cloud for storage or processing. Cloud providers might utilize data centers spread across the globe, meaning research data might be located outside the United States, and its legal jurisdictions. Terms of service might grant cloud providers a license to access and use research data for purposes not initially intended or approved of by the subjects involved. Stewardship may require the prompt and complete destruction of research data, a measure complicated if a cloud provider has distributed and backed-up the data across multiple locations.

A more unique application of cloud computing for research involves the crowdsourcing of data analysis and processing functions, that is, leveraging the thousands of users of various online products and services to complete research related tasks remotely. Examples include using a distributed network of video game players to assist in solving protein folding problems (Markoff 2010), and leveraging Amazon’s Mechanical Turk crowdsourcing marketplace platform to assist with large scale data processing and coding functions that cannot be automated (Conley & Tosti-Kharas 2010; Chen et al. 2011). Using cloud-based platforms can raise various critical ethical and methodological issues.

First, new concerns over data privacy and security emerge when research tasks are widely distributed across a global network of users. Researchers must take great care in ensuring sensitive research data isn’t accessible by outsourced labor, or that none of the users providing crowdsourced labor are able to aggregate and store their own copy of the research dataset. Second, crowdsourcing presents ethical concerns over trust and validity of the research process itself. Rather than a local team of research assistants usually under a principle investigator’s supervision and control, crowdsourcing tends to be distributed beyond the direct management or control of the researcher, providing less opportunity to ensure sufficient training for the required tasks. Thus, researchers will need to create additional means of verifying data results to confirm tasks are completed properly and correctly.

Two additional ethical concerns with crowdsourcing involve labor management and authorship. Turks were not originally intended to be research subjects, first and foremost. However, researchers using Mechanical Turks must ensure that the laborers on the other end of the cloud-based relationship are not being exploited, that they are legally eligible to be working for hire, and that the incentives provided are real, meaningful, and appropriate (Scholz 2008; Williams 2010, Other Internet Resources).

Finally, at the end of a successful research project utilizing crowdsourcing, a researcher may be confronted with the ethical challenge of how to properly acknowledge the contributions made by (typically anonymous) laborers. Ethical research requires the fair and accurate description of authorship. Disciplines vary as to how to report relative contributions made by collaborators and research assistants, and this dilemma increases when crowdsourcing is used to assist with the research project.

4.5 Big Data Considerations

Algorithmic processing is a corollary of big data research, and newfound ethical considerations have emerged. From “algorithmic harms” to “predictive analytics,” the power of today’s algorithms exceeds long-standing privacy beliefs and norms. Specifically, the National Science and Technology Council note:

“Analytical algorithms” as algorithms for prioritizing, classifying, filtering, and predicting. Their use can create privacy issues when the information used by algorithms is inappropriate or inaccurate, when incorrect decisions occur, when there is no reasonable means of redress, when an individual’s autonomy is directly related to algorithmic scoring, or when the use of predictive algorithms chills desirable behavior or encourages other privacy harms. (NSTC 2016, p. 18, Other Internet Resources).

While the concept of big data is not new, and the term has been in technical discourses since the 1990s, the public awareness and response to big data research is much more recent. Following the rise of social media-based research, Buchanan (2016) has delineated the emergence of “big data”-based research from 2012 to the present, with no signs of an end point.

Big data research is challenging for research ethcis boards, often presenting what the computer ethicist James Moor would call “conceptual muddles”: the inability to properly conceptualize the ethical values and dilemmas at play in a new technological context. Subject privacy, for example, is typically protected within the context of research ethics through a combination of various tactics and practices, including engaging in data collection under controlled or anonymous environments, limiting the personal information gathered, scrubbing data to remove or obscure personally identifiable information, and using access restrictions and related data security methods to prevent unauthorized access and use of the research data itself. The nature and understanding of privacy become muddled, however, in the context of big data research, and as a result, ensuring it is respected and protected in this new domain becomes challenging.

For example, the determination of what constitutes “private information” – and thus triggering particular privacy concerns – becomes difficult within the context of big data research. Distinctions within the regulatory definition of “private information” – namely, that it only applies to information which subjects reasonably expect is not normally monitored or collected and not normally publicly available – become less clearly applicable when considering the data environments and collection practices that typify big data research, such as the wholesale scraping of Facebook news feed content or public OKCupid accounts.

When considered through the lens of the regulatory definition of “private information,” social media postings are often considered public, especially when users take no visible, affirmative steps to restrict access. As a result, big data researchers might conclude subjects are not deserving of particular privacy consideration. Yet, the social media platforms frequently used for big data research purposes represent a complex environment of socio-technical interactions, where users often fail to understand fully how their social activities might be regularly monitored, harvested, and shared with third parties, where privacy policies and terms of service are not fully understood and change frequently, and where the technical infrastructures and interfaces are designed to make restricting information flows and protecting one’s privacy difficult.

As noted above ) it becomes difficult to confirm a user’s intention when sharing information on a social media platform, and whether users recognize that providing information in a social environment also opens it up for widespread harvesting and use by researchers. This uncertainty in the intent and expectations of users of social media and internet-based platforms – often fueled by the design of the platforms themselves – create numerous conceptual muddles in our ability to properly alleviate potential privacy concerns in big data research.

The conceptual gaps that exist regarding privacy and the definition of personally identifiable information in the context of big data research inevitably lead to similar gaps regarding when informed consent is necessary. Researchers mining Facebook profile information or public Twitter streams, for example, typically argue that no specific consent is necessary due to the fact the information was publicly available. It remains unknown whether users truly understood the technical conditions under which they made information visible on these social media platforms or if they foresaw their data being harvested for research purposes, rather than just appearing onscreen for fleeting glimpses by their friends and followers. In the case of the Facebook emotional contagion experiment (Kramer, Guillory, & Hancock, 2014), the lack of obtaining consent was initially rationalized through the notion that the research appeared to have been carried out under Facebook’s extensive terms of service, whose data use policy, while more than 9,000 words long, does make passing mention to “research.” It was later revealed, however, that the data use policy in effect when the experiment was conducted never mentioned “research” at all (Hill, 2014).

4.6 Internet Research and Industry Ethics

The Facebook emotional contagion experiment, discussed above, is just one example in a larger trend of big data research conducted outside of traditional university-based research ethics oversight mechanisms. Nearly all online companies and platforms analyze data and test theories that often rely on data from individual users. Industry-based data research, once limited to marketing-oriented “A/B testing” of benign changes in interface designs or corporate communication messages, now encompasses information about how users behave online, what they click and read, how they move, eat, and sleep, the content they consume online, and even how they move about their homes. Such research produces inferences about individuals’ tastes and preferences, social relations, communications, movements, and work habits. It implies pervasive testing of products and services that are an integral part of intimate daily life, ranging from connected home products to social networks to smart cars. Except in cases where they are partnering with academic institutions, companies typically do not put internal research activities through a formal ethical review process, since results are typically never shared publicly and the perceived impact on users is minimal.

The growth of industry-based big data research, however, presents new risks to individuals’ privacy, on the one hand, and to organizations’ legal compliance, reputation, and brand, on the other hand. When organizations process personal data outside of their original context, individuals may in some cases greatly benefit, but in other cases may be surprised, outraged, or even harmed. Soliciting consent from affected individuals can be impractical: Organizations might collect data indirectly or based on identifiers that do not directly match individuals’ contact details. Moreover, by definition, some non-contextual uses – including the retention of data for longer than envisaged for purposes of a newly emergent use – may be unforeseen at the time of collection. As Crawford and Schultz (2014) note, “how does one give notice and get consent for innumerable and perhaps even yet-to-be-determined queries that one might run that create ‘personal data’?” (p. 108).

With corporations developing vast “living laboratories” for big data research, research ethics has become a critical component of the design and oversight of these activities. For example, in response to the controversy surrounding the emotional contagion experiment, Facebook developed an internal ethical review process that, according to its facilitators, “leverages the company’s organizational structure, creating multiple training opportunities and research review checkpoints in the existing organizational flow” (Jackman & Kanerva, 2016, p. 444). While such efforts are important and laudable, they remain open for improvement. Hoffmann (2016), for example, has criticized Facebook for launching “an ethics review process that innovates on process but tells us little about the ethical values informing their product development.” In short, while Internet companies like Facebook recognize the need to review the ethics of internal research projects, such efforts remain largely perfunctory and meant for easing public concerns, and not necessarily fully in line with the ethical deliberations that take place in academic settings.

While many researchers and review boards across the world work without formal guidance, many REBs have developed guidelines for Internet research. While many such guidelines exist, the following provide examples for researchers preparing for an REB review, or for boards developing their own policies.

• Bard College (New York) Suggestions for Internet Research
• Loyola University Chicago Policy for Online Survey Research Involving Human Participants
• Penn State Guidelines for Computer- and Internet-Based Research Involving Human Participants
• Queen’s University (Canada) Exemption Policy re: Research Ethics Review for Projects Involving Digital Data Collection
• U.K. Data Archive Further Resources
• University of Connecticut Guidance for Computer and Internet-Based Research Involving Human Participants

Additional resources are found in Other Internet Resources below.

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Research Article

Ethical issues in using the internet to engage participants in family and child research: A scoping review

Roles Investigation, Methodology, Validation, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Validation, Writing – original draft, Writing – review & editing

Affiliations Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia, Parenting Research Centre, Melbourne, Victoria, Australia

Roles Investigation, Validation, Writing – review & editing

Roles Investigation, Methodology, Writing – review & editing

Affiliations Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia

Roles Investigation, Writing – review & editing

Roles Conceptualization, Funding acquisition, Methodology, Resources, Supervision, Writing – review & editing

Affiliations Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia, Queensland University of Technology, Brisbane, Queensland, Australia

Roles Conceptualization, Funding acquisition, Methodology, Writing – review & editing

Affiliation Department of Communications and Media, La Trobe University, Melbourne, Victoria, Australia

Affiliations Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Victoria, Australia, School of Public Health, The University of Queensland, Brisbane, Queensland, Australia

Affiliation La Trobe Law School, La Trobe University, Melbourne, Victoria, Australia

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Validation, Writing – review & editing

• Stacey Hokke, 
• Naomi J. Hackworth, 
• Nina Quin, 
• Shannon K. Bennetts, 
• Hnin Yee Win, 
• Jan M. Nicholson, 
• Lawrie Zion, 
• Jayne Lucke, 
• Patrick Keyzer, 
• Sharinne B. Crawford

• Published: September 27, 2018
• https://doi.org/10.1371/journal.pone.0204572
• Reader Comments

The internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.

Academic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.

Sixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children’s vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.

Conclusions

Engaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

Citation: Hokke S, Hackworth NJ, Quin N, Bennetts SK, Win HY, Nicholson JM, et al. (2018) Ethical issues in using the internet to engage participants in family and child research: A scoping review. PLoS ONE 13(9): e0204572. https://doi.org/10.1371/journal.pone.0204572

Editor: Yih-Kuen Jan, University of Illinois at Urbana-Champaign, UNITED STATES

Received: January 3, 2018; Accepted: September 11, 2018; Published: September 27, 2018

Copyright: © 2018 Hokke et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the manuscript and its Supporting Information files.

Funding: This work was funded by La Trobe University through the Transforming Human Societies Research Focus Area Scheme 1, 2015; Associate Pro Vice Chancellor (Research), College of Science, Health & Engineering; and Pro Vice Chancellor (Research). Authors SH, NJH, NQ, SKB, JMN and SBC were supported by the Roberta Holmes Transition to Contemporary Parenthood Program (Australian Communities Foundation, Coronella sub-fund). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Parents and children in contemporary society are facing new and multiple demands that may affect their wellbeing, and limit parents’ capacity to support their child’s healthy development [ 1 ]. High quality research is key to understanding these changes and to providing a sound evidence base for the development of policies and programs to support families, parents and children. Being able to engage families from diverse backgrounds and in sufficient numbers is critical to the completion, scientific validity and financial viability of such research [ 2 ]. However, a major research challenge is the ability to attract and retain participants over time to assess long-term outcomes [ 3 ], particularly within the context of increasing family time pressure and population mobility.

Engaging participants in research can involve: recruitment (strategies to invite potential participants and enrol them into research); retention (strategies to ensure ongoing participant involvement to reduce attrition); and tracing (strategies to find and re-connect with participants who have been lost to follow-up). Conventional approaches to engage families and children in research (e.g., telephone calls, mail-outs, print media, face-to-face) are not only expensive and labour intensive [ 4 , 5 ], but are increasingly ineffective in the face of contemporary mobile populations and changing communication patterns [ 6 ]. For instance, the use of random digit dialling to recruit participants is less effective as many families now live in households without a fixed telephone [ 7 ]. Recruiting families via address-based sampling is also difficult in the context of increasing residential mobility, which is high among young and socially disadvantaged families (e.g., experiencing poverty, unemployment, relationship breakdown) [ 8 , 9 ] who are often the target of research. Maintaining contact with mobile families can be challenging in longitudinal research, especially if there are lengthy periods between data collection waves or if a prospective follow-up study was not part of the initial research design [ 10 ].

Increasingly, child and family researchers are using online methods to recruit, retain and trace participants [ 6 , 11 – 13 ]. In developed countries, internet access is almost universal among households with children, with most connecting online via mobile or smart phones [ 14 , 15 ]. Children and adolescents have among the highest rates of internet use and frequency of use compared to older age groups, and social media use is ubiquitous among adolescents [ 16 ]. Parents are also increasingly online [ 17 ]. More parents access Facebook on a daily basis than non-parents, with usage tending to increase during the transition to parenthood [ 18 , 19 ].

As a research tool, the internet provides alternative strategies to reach participants where they ‘live’, and presents an ostensibly efficient and cost-effective solution to the challenges associated with conventional methods of participant engagement [ 20 ]. For example, study invitations can be advertised on websites or circulated via email to a large audience quickly and at little expense. Advertisements on social networking sites such as Facebook can be specifically targeted to identify eligible participants based on their personal characteristics or interests. Evidence suggests that child and parent samples can be recruited more efficiently and at a lower cost online than offline, and may result in a sample that is representative of the target population, or which has similar representativeness to studies using offline recruitment methods [ 21 – 23 ]. The internet also has potential to reduce attrition and non-response bias in longitudinal research with children and parents [ 13 , 24 , 25 ]. Posting on study websites or directly messaging participants on social media can maintain contact with study cohorts and send calls-to-action at appropriate times (e.g., for measure completion), while internet search engines and the search features of social networking sites can be used to trace participants who have been lost to follow-up.

Given the ubiquity of the internet and smartphone technology, the public availability of online communities and the potential cost and time efficiencies, it is unsurprising that family and child researchers are increasingly harnessing the internet to engage participants. As with all new research methodologies however, consideration needs to be given to the ethical issues surrounding its use. It has been argued that maintaining privacy and anonymity and obtaining informed consent are more complex in online research than offline research [ 26 ]. As a relatively new research tool, engaging participants online may also present issues that may be novel or less apparent. For example, the internet, and particularly social media, introduce new ways to access data and personal information. This raises questions regarding the ethical appropriateness of accessing digital data or online profiles for research purposes, and how the ethical principles embodied in codes of conduct (e.g., [ 27 ]) are upheld.

Ethical issues may be particularly pertinent in online research with parents and children. Such research may be sensitive in nature and involve vulnerable populations. Communicating with and engaging minors in an online setting can present further challenges, such as how researchers accurately determine a child’s capacity to consent to participate and the process of obtaining parental consent. Within this context, it is imperative that researchers, ethics committees and institutional review boards are aware of the advantages, limitations and ethical challenges of recruiting, retaining or tracing participants online. While discourse on internet and social media research ethics in family and child research is emerging [ 4 , 28 ], this may not be empirically based. In addition, there is a lack of definitive national regulatory guidance on internet research ethics. To date, little research has systematically assessed the ethical issues encountered or considered by those using the internet to engage participants in child and family research. It is unclear what ethical issues are considered by researchers in this setting and whether these ethical concerns differ from those in offline research, or in research not involving children and parents. It is also unclear what ethical guidance family and child researchers follow when recruiting, retaining or tracing participants online.

To address these gaps, a scoping review was conducted. Scoping reviews aim to synthesise and narratively integrate evidence when there is a large and diverse body of literature that has not been comprehensively reviewed [ 29 ]. They aim to map the extent, range and nature of research, and identify key concepts and gaps in the literature to inform future work [ 29 , 30 ]. Scoping reviews differ from systematic reviews, in that they are often broader in focus, include a range of study designs and methodologies, and typically do not appraise study quality. They differ from narrative or literature reviews as they follow rigorous, systematic methods to identify literature and require analytical re-interpretation of evidence [ 30 ].

This review was conducted to gain an understanding of the ethical issues associated with the use of the internet to engage parents, children and families in research, and to identify available resources to support the ethical conduct of family and child researchers in the context of online research. The review aimed to assemble and summarise the ethical concerns and considerations reported in available literature and identify ethical issues unique to using the internet to recruit, retain and trace families and children in research. A systematic search of academic literature was conducted to answer the following research questions: (1) How is the internet used to recruit, retain and trace participants in child and family research?; (2) How are ethical and consent procedures reported?; and (3) What ethical concerns are identified? In addition, a general grey literature search was conducted to determine: (4) What ethical guidelines are available and being used to inform internet research?

A multi-disciplinary research team was established to undertake the review, with expertise in child and family research, public health, psychology, media and communications, and law. The scoping review was conducted according to a 5-stage framework [ 29 – 31 ]: (1) identifying the research questions; (2) identifying the search strategy; (3) study selection; (4) charting the data; and (5) collating, summarising and reporting the results. These steps were applied separately to searches of the academic and grey literatures.

Academic literature search

To address Research Questions 1 to 3 above, academic literature was searched using four categories of keywords: engagement strategy , internet , ethics and focus sample ( Table 1 ). Boolean search operators “AND” and “OR” were used to combine keywords between and within categories. Searches were conducted in the following electronic databases selected to ensure maximum coverage of family, child and internet research: Scopus, PsycINFO, Embase (includes Medline), ERIC, CINAHL and Informit. As the Scopus search generated over 70,000 initial hits, results were refined by applying additional search limits (see S1 File ).

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https://doi.org/10.1371/journal.pone.0204572.t001

Articles were eligible for inclusion if they were written in English, published between January 2006 and February 2016, and used the internet (e.g., social network sites, websites, email, listserv, blogs, forums, applications, online research participant registries) as a method for recruiting, retaining or tracing families, parents and/or children in research. Studies that used the internet for data collection but not participant engagement were excluded. Studies that used online residential listings were also excluded as these listings are typically used for compiling subsequent mail-out or door-knocking recruitment strategies. Included articles could be original research, reviews, discussion papers, outcomes papers, protocol papers or editorial letters. Books, book chapters and thesis dissertations were excluded. Published conference abstracts were used to search for subsequently published full-text articles, which were included if they met the inclusion criteria.

Upon completion of the search, duplicate articles were removed and search results were screened by title and abstract for eligibility. Articles passing the abstract screen were then retrieved in full-text and further screened for eligibility. Screening of abstracts and full-text articles was undertaken by a primary reviewer (NQ) and confirmed by a second reviewer (SH). Conflicts were resolved by consensus with a third and fourth researcher (NJH, SBC).

Articles were summarised, and characteristics were charted, including: author(s), year of publication, geographic location, article type, study participants, method(s) of participant engagement, type of internet technology used, study approval and consent procedures, ethical considerations and concerns, and authors’ use of ethical guidelines and resources. Methods of participant engagement were defined as follows: recruitment —strategies to initiate contact and invite potential participants; retention— strategies to maintain contact with participants in longitudinal research; and tracing —strategies to find and re-establish contact with participants in longitudinal research who have been lost to follow-up. Reference lists of full-text articles were searched and eligible articles charted. Each article was analysed by a primary reviewer (SH) and extracted data confirmed by a second and third reviewer (NJH, SBC). A narrative account of key findings is presented according to each ethical consideration identified.

Grey literature search

Ethical guidelines and recommendations produced by governments, research institutes or professional associations are documents classified as ‘grey literature’. This term refers to reports, theses, factsheets, websites, policy documents and other information produced by government, academics, business and industry in print and electronic formats. These documents are not controlled by commercial publishing [ 32 ], may not be peer-reviewed and most are not included in academic databases. Grey literature published online can be located through internet searches [ 33 ].

To address Research Question 4, an internet search was conducted to identify guidelines to support researchers’ and human ethics committees’ ethical conduct of internet research. A general internet search was performed with the popular web search engine Google ( www.google.com ) using the following search terms: (ethic*) AND (recommendation* OR guide*) AND (internet OR "social media" OR online) AND (research). The first 100 hits (as sorted for relevance by Google) were screened by title and text and potentially relevant results were viewed. Guidelines were included if they were published from January 2006 to February 2016 and focused on any internet research methods. Information about each resource was charted, including author(s), affiliated institution(s), year of publication, format and purpose, comprehensiveness regarding the research methods raised, and the ethical considerations and recommendations discussed, including ethical issues specific to family and child research.

Summary of search process and results

The search process and results are summarised in Fig 1 . Searching academic databases identified 3,794 abstracts, with 3,537 remaining following the removal of duplicates. Preliminary screening of abstracts identified 205 articles for full-text screening, of which 53 articles met the inclusion criteria. Hand searching reference lists identified 12 additional relevant articles, resulting in a total of 65 academic articles for inclusion in the scoping review (see S2 File ). Five professional guidelines and 10 university guidelines specific to internet research ethics were identified by Google search.

https://doi.org/10.1371/journal.pone.0204572.g001

Academic literature article characteristics

The majority of identified academic articles were published after 2011 ( n = 47, 72%) and originated from the USA ( n = 24, 37%), UK ( n = 12, 18%), Australia ( n = 11, 17%) and the Netherlands ( n = 9, 14%). Most were original research ( n = 58, 89%), including four research protocols (6%) and 10 case studies (15%). The vast majority of original research papers reported using the internet to recruit research participants ( n = 51/58 articles; 88%). Using the internet to retain participants was reported in seven articles (12%; six also used the internet for recruitment) and to trace participants in six articles (10%). Four discussion papers (6%), two systematic reviews (3%) and one letter to the Editor were identified, and these primarily focused on participant recruitment. Overall, one third of the articles addressed or described specific ethical issues of engaging participants online ( n = 26/65, 40%). The remainder reported using the internet as a research tool but did not discuss ethics beyond reporting general consent or ethics approval procedures.

The participant samples for the original research articles were predominantly youths ( n = 20/58, 34%; typically ranging in age from 15–25 years) or adolescents ( n = 13/58, 22%; typically ranging in age from 11–18 years). Six studies used mixed samples of child/adolescent or adolescent/adult participants ( n = 6/58, 10%) and four longitudinal studies ( n = 4/58, 7%) traced children into adulthood. The participant samples for the remainder were parents ( n = 11/58, 19%) or families (e.g., parents and children; n = 4/58, 7%).

How is the internet used to recruit, retain and trace participants in child and family research?

Just over half of the research articles reported using a combination of offline and online methods to engage participants ( n = 32/58; 55%), with 45% ( n = 26/58) using online methods exclusively. As summarised in Table 2 , websites, Facebook and email were the most commonly used internet technologies. The use of websites or email for participant engagement appeared to be stable across the study inclusion period (2006–2016). Studies using social networking sites, such as Facebook, to engage participants were first published in 2011 and were used consistently thereafter.

https://doi.org/10.1371/journal.pone.0204572.t002

For participant recruitment , advertisements and posts on websites were the most commonly used online method ( n = 27/51; 53%). The level of detail provided about the websites used varied considerably (see Table 2 ). Nine articles (18%) named the website, 12 (24%) gave a general description, six (12%) provided no information, and four (8%) created a study-specific website for recruitment. Facebook was the most common social networking site used for participant recruitment ( n = 18/51; 35%). Five articles (10%) reported the use of another social networking site (e.g., Twitter, MySpace) and five (10%) did not name the social networking site used. Email was the next most common online method for recruitment ( n = 14/51; 27%), with invitations sent to members of electronic mailing lists, listservs, research panels and registries. Several studies sought to recruit participants by posting study information on blogs, forums and discussion boards ( n = 10/51, 20%). Less common recruitment methods included: respondent-driven sampling online, where existing participants were asked to invite their friends to participate (via email, Facebook or an unspecified method); dissemination of the study invitation through online social networks (snowballing); and the use of researchers’ own personal online networks.

Few studies reported on the success of using the internet to recruit participants in research compared to offline methods. Of the 25 studies that reported using both offline and online methods, less than a third ( n = 7; 28%) commented on how their sample was sourced or the relative success of each recruitment strategy. Four studies found online methods yielded more enrolled participants than offline methods [ 34 – 37 ] and three studies reported the opposite [ 38 – 40 ]. Recruitment sources and success rates were reported by half of the studies using either a single ( n = 8/18, 44%) or multiple methods of online recruitment ( n = 3/6, 50%).

For the retention of participants in longitudinal research, five studies used email to keep in contact ( n = 5/7, 71%), one used a study website and one became ‘friends’ with participants on Facebook. Four studies ( n = 4/7, 57%) employed both offline (e.g., mail, phone, SMS) and online retention methods [ 34 , 41 – 43 ]. Again, the success of online versus offline methods for retaining participants was poorly reported. Only one study provided details on retention rates using email reminders and a subsequent mail-out to non-responders [ 34 ] and concluded that multiple reminders using online and offline modes of contact improved overall response rates. Two studies reported retention rates of the cohort overall, rather than by the method used to maintain contact [ 41 , 42 ] and one study did not report retention rates, yet remarked that Facebook was a more effective retention tool than email [ 43 ].

Using the internet to trace participants who had been lost to follow-up was reported in six studies. The majority ( n = 5/6; 83%) combined this with offline methods (e.g., electoral roll, mail, phone, school roll). Most commonly, online tracing was done via social networking sites (e.g., Facebook, Myspace, Friends United) using the platform’s messaging feature to send private messages to potential participant matches, identified by the information publicly displayed on their profile. Researchers also traced participants using internet search engines or by posting messages on relevant websites requesting participants to contact them. Half of the six studies using internet tracing reported on the success of this compared to offline tracing methods [ 44 – 46 ]. All three concluded that social networking sites were a valuable tool to trace and reconnect with participants, with Masson et al. [ 44 ] reporting a higher response rate for participants traced via Facebook than those traced using the electoral roll and contacted via post. Conversely, a fourth study commented that social media tracing was less successful than offline methods but did not provide tracing success rates [ 47 ].

How are ethical and consent procedures reported?

The majority of research articles reported obtaining study approval from an ethics committee or institutional review board ( n = 46/58; 79%). Ethical approval was not specifically mentioned in 10 articles (17%). One article stated that the researchers did not seek ethical approval [ 48 ] and another was noted as exempt from ethical review [ 49 ].

Informed consent was obtained online in approximately one third of studies via electronic signature, email or online checkboxes ( n = 19/58, 33%) and one study obtained consent via text message [ 50 ]. Despite the online nature of recruitment, offline methods of informed consent (verbal or post) were also common ( n = 16/58, 28%). ‘Implied consent’ was reported in four studies (7%) [ 35 , 48 , 51 , 52 ] where the researchers regarded that participants had provided consent by the act of participating in online data collection. Some articles did not mention whether ( n = 12/58, 21%) or how ( n = 5/58, 9%) consent was obtained.

Of the 40 studies involving adolescents or children, 12 (30%) stated that parental consent was obtained if participants were younger than 16 or 18 years with eight of these studies also obtaining child assent. Parental consent was waived in nine studies (23%) involving adolescents (aged 11–17 years). Reasons provided related to the anonymous nature of the study, the study’s minimal risk, the perception that parental permission would deter adolescent participation, to prevent participants disclosing sensitive information to their parents (i.e. sexual identity) and national age of consent laws [ 20 , 48 , 52 – 55 ]. Sensitivity of the topic alone (e.g., adolescent mental or sexual health) had little bearing on whether parental consent was sought. Nineteen articles (48%) involving adolescents or children did not discuss parental consent procedures.

Of the six studies that used the internet to trace participants, three had previously obtained consent for follow-up, without specifying the method of contact in this consent [ 46 , 56 , 57 ]. Two studies did not have formal permission to re-contact individuals, likely due to the length of time elapsed (10–50 years) since initial contact [ 44 , 47 ], and one study did not report consent procedures [ 45 ].

What ethical concerns are identified?

Sixty percent of the reviewed articles did not comment on any ethical concerns associated with using the internet to engage participants. The remaining articles ( n = 26/65) discussed one or more ethical considerations. As summarised below, some of these issues were specific to family and child research online (e.g., parental consent, age verification, children’s vulnerability) while others are more broadly applicable (e.g., privacy and confidentiality, disparities in internet access).

Parental consent.

Several articles noted that recruiting children into research online and obtaining parental consent can be ethically complex and logistically difficult [ 36 , 58 – 61 ]. The required dialogue between researcher, child and parent is challenging to achieve in the absence of face-to-face communication [ 36 , 54 ]. Researchers must adequately inform parents, gain their trust, and reassure them that the research is legitimate and reputable [ 60 , 62 ]. This may be facilitated by personally contacting parents or by providing them access to multiple sources of study information (e.g., study websites and social networking profiles) [ 36 ]. One review article suggested utilising video or audio recordings to enable parents and children to provide consent/assent online [ 63 ]. Study authors noted that further information and guidance on best practices of gaining parental consent online are required [ 11 , 54 ].

Obtaining parental consent via post or email for children engaged in research online had several limitations. One study reported that very few children returned signed consent forms by post [ 60 ], possibly due to the inconvenience and cost of this process. There is also limited capacity for researchers to ensure that participants are sufficiently informed [ 59 ], and a risk of parental consent forms being fraudulently signed by young participants or non-parents [ 34 , 59 , 64 ]. One study reported excluding young adolescents (13–16 years) due to concerns that they might fraudulently complete the online parental consent forms themselves [ 34 ]. Given these barriers, Henderson et al. [ 59 ] recommended seeking child and parent consent via telephone. This allows researchers to separately test child and parent speak understanding of the study procedure, risks and benefits, and enables verification of the child’s age with the parent. Amon et al. [ 11 ] alternatively proposed that researchers interested in recruiting young people via social media may benefit from directly targeting parents instead of children.

Several other methods were used to obtain consent for child participation. Boydell et al. [ 62 ] encouraged participants (aged 14–18 years) to discuss the study with their parents and then included a tick box in the online consent form for adolescent participants to declare this. One study performed a mature minor assessment of interested respondents aged under 18 years by telephone [ 20 , 65 , 66 ]. This involved the researcher assessing a participant’s age, schooling, general maturity, and ability to understand the study, to determine their capacity to provide informed consent.

In some studies involving children and adolescents, waiving parental consent was considered a methodological and ethical necessity. For example, Moinian [ 58 ] conducted an ethnographic study of children’s diary entries within an online community to explore the online activities that children engaged in outside of their parents’ knowledge or control—a topic that made “the process of obtaining parents’ consent practically impossible” [ 58 , p. 56]. In other studies, parental consent was waived if parental permission was likely to deter participation [ 54 ], or would put participants at harm. For example, parental permission was waived in two US studies involving gay and bisexual adolescents as young as 13 years [ 52 , 55 ] as it was considered that young people may be placed at risk by disclosing their sexual identity to their parents. Some studies noted that where parental consent was required by law, younger participants were under-represented due to their reluctance to seek parental permission [ 61 , 67 , 68 ] or due to parents not providing consent [ 69 ]. These articles debated the age at which an adolescent should be able to give informed consent without parental permission, although this was not specifically discussed in the context of online research.

Age verification.

Verification of participant identity and age presents challenges in online research [ 53 , 59 , 62 ]. This was of particular concern in studies involving child and adolescent populations, with one article commenting that “attempts can, and arguably should, be made to verify the age of participants [in online research with young people]” [ 62 , p. 13]. Verifying participant age was also pertinent to research with adults, as minors may participate without the knowledge of the investigators [ 64 ].

To verify participant age, researchers may need to directly contact interested participants, examine the age noted on participants’ social networking profiles or employ other age verification tools [ 59 , 62 , 70 ]. While researchers recognised that age misrepresentation is not confined to online research [ 59 , 62 , 71 ], one study argued that online users are inclined to falsify their age [ 70 ]. While the use of online consent procedures requires researchers to trust that participants are who they say they are [ 54 , 64 ], it was acknowledged that postal consent procedures are subject to similar issues [ 59 ].

Participant vulnerability.

A few articles noted that children and young people participating in online research should be “generally regarded as ‘vulnerable subjects’ requiring a heightened sensitivity to issues of gaining informed consent and ensuring confidentiality” [ 72 , p. 554]; issues that were further amplified in the online sphere [ 63 , 72 ]. Children are increasingly online and have greater knowledge, confidence and reliance upon digital technologies than adults [ 63 ]. However, they may not be aware of public and private boundaries and “are reluctant to remain anonymous” online [ 58 , p. 65]. Children openly express themselves on the internet, revealing real names, locations and personal details, and may have different understandings of privacy and the permanence of online content [ 58 , 72 ]. This is ethically challenging as children, more than adults, may freely share sensitive and personal information online without realising that others, including researchers, can access their posts and information [ 72 ].

Henderson et al. [ 72 ] provided further comment on the vulnerability of children in social media-based research and the array of complex ethical issues regarding obtaining informed consent and assuring privacy and confidentiality that may be difficult for adults to grasp, let alone children. As young people are generally disempowered in research, the authors suggest that researchers consult with children across all stages of the study so that they have greater control over the research process. They also suggest, as recommended by Sharkey et al. [ 71 ], that consent of children and young people in social media-based research should be ongoing or phased rather than a one-off occurrence, involving consultation with children at all stages of the research (from design to data collection, analysis and reporting).

Across the articles, there was little discourse on whether online research elevates risk among vulnerable people compared to offline research. One article stressed the importance of considering “whether individuals who choose to engage in internet research may be more vulnerable to safety concerns than their offline counterparts”, as there is some evidence that frequent internet users have poorer mental health than others [ 59 , p. 1120]. Sharkey et al. [ 71 ] asserted that the context and medium of research itself can increase vulnerability. In their case, the online setting, the sensitive topic, the young age of participants, the lack of face-to-face interaction and the need to protect anonymity together created the ‘perfect storm’ of ethical issues, requiring careful consideration of ethical practice and how to maintain anonymity of a high-risk and vulnerable population.

Participant privacy, confidentiality and anonymity.

Participant privacy, confidentiality and anonymity were the most commonly reported ethical concerns. These concerns are applicable to internet research across all disciplines, not just those involving families and children. Articles commented on the complexity of separating public and private domains online, particularly for social networking sites and online communities that encourage users to share information [ 45 , 46 ]. The public nature of these sites was seen to be “inherently at odds with the confidential or anonymous nature of research” [ 63 , p. 62]. While the terms and conditions of social media platforms usually indicate the potential for public disclosure, it is unlikely that users intend or expect their online information to be used by researchers [ 47 , 72 ]. Additionally, confidentiality may be breached by participants inadvertently revealing their association with a study by writing on a comment board, ‘liking’ a study page, or adding a link to a study site on their own profile [ 45 , 54 ]. Researchers are therefore reliant on participants understanding and using privacy settings [ 63 , 72 ] to prevent unintended sharing of personal information and research involvement [ 47 ].

Additional issues concerned the risk of revealing participant identities via website breaches or deductive disclosure, and protecting participant privacy in studies that traced participants. Notably, and of benefit to other researchers, many articles reflected on how they sought to maintain participant confidentiality, privacy and anonymity in research conducted online and offered advice for future research, as discussed below.

Several articles discussed the risk of deductive disclosure of an individual’s identity for research conducted within ‘open’ discussion boards, forums and web pages [ 47 , 58 , 62 , 64 , 71 ]. Using a search engine to trace phrases or quotes from a research report or publication may reveal participants, thus breaching anonymity, confidentiality and privacy. Such risks may be reduced by omitting, anonymising or paraphrasing quotes [ 71 ], albeit potentially at the expense of the integrity of the original post. Researchers expressed concern that data that have been de-identified for reporting may not remain so with future technological developments [ 72 ].

Regarding online tracing, several articles describing the use of social media to trace and re-connect with lost participants questioned whether searching for a participant on social networking sites was a violation of online privacy [ 44 , 47 , 72 ]. One study that traced participants online stated that they only found information about participants from sites that individuals made publicly available [ 44 ]. The authors reasoned that this was essentially no different to finding individuals who list their name in public telephone directories or electoral rolls, since social media users are able to conceal or publicise their profiles. However, they noted that “there are legitimate concerns as to whether some (perhaps more vulnerable) individuals understand the full implications of making their personal details publicly visible” [ 47 , p. 35], potentially to a much larger audience than intended [ 44 , 47 ].

Three articles reported on participants’ experiences of being traced using social media. Two studies found participants were predominantly positive about the experience, although somewhat surprised about being re-contacted via social networking sites [ 44 , 56 ]. Participants perceived Facebook to be a “more secure and private way of being contacted than by telephone or letter” [ 44 , p. 32] and many were friendly and informal when contacted via Facebook. Conversely, one study found participants were cautious about engaging with researchers via social media as they were an older generation who lacked experience and confidence with that medium [ 47 ].

In general, using social media to trace participants was considered a valuable and worthwhile approach. However, authors were mindful that online tracing needs to be undertaken with care to ensure participant privacy and confidentiality. The majority of articles that used social media to trace participants ( n = 4/5) discussed the ethical challenges they encountered when using this method [ 44 – 47 ]. They also provided advice on how to minimise breaches in participant confidentiality and improve study legitimacy, including how to contact participants privately, prevent individuals or researchers inadvertently revealing their involvement in a study and to ensure that a traced participant is a correct match.

Of all reviewed articles, a number emphasised the responsibility of the researcher in protecting online data and participant anonymity, confidentiality and privacy, and how this should be a top priority [ 43 , 59 , 71 , 73 , 74 ]. Authors stressed that researchers must be aware of participants’ expectations about privacy and confidentiality online [ 74 ] and be mindful of participants’ awareness and knowledge (or lack of knowledge) of internet technologies and privacy settings [ 47 ]. One article suggested that researchers have an “ethical duty to call attention to this lack of privacy” and to inform participants if their privacy and anonymity cannot be guaranteed online [ 43 , p. 142]. Baker [ 43 ] used Facebook as a communication tool and source of data in ethnographic research with adolescents and required participants to add the researcher as a contact or ‘friend’. This presented an ethical challenge as all participants would be able to see one another on Facebook. To call attention to this, the consent form used Facebook terminology, explicitly stated that the anonymity and privacy of the participant could not be protected and instructed participants on how they could adjust their Facebook privacy settings to avoid inadvertent sharing of information.

Articles also highlighted that websites and platforms are rapidly changing as new features are developed [ 45 , 54 ]. This requires researchers to be familiar with privacy settings and to keep up to date with changes that could affect their participants [ 44 ]. For example, advertising on social networking sites as a recruitment strategy requires researchers to know and understand how advertising features operate and what personal information is collected from participants interested in participating. While Facebook does not reveal individual user information to the advertiser, researchers may want to consider minimising the amount of information exchanged within such sites and direct interested participants to a secure external website where they have greater control over privacy [ 20 , 54 , 73 ].

Informed consent.

A small number of articles discussed issues regarding informed consent when engaging participants online. Compared to some offline recruitment methods (such as recruiting participants face-to-face or by telephone), researchers have a “lack of immediate and real-time engagement with participants at the time of program enrolment online” [ 54 , p. 1084] which may limit their ability to assess participant comprehension and ensure participants are truly informed [ 54 , 64 ]. These concerns brought into question whether informed consent and implied consent can be trusted in online surveys. While one option is to ask participants to click a button at the beginning of an online survey to acknowledge their agreement and consent before being allowed to proceed, this method relies on participants having a sound understanding of the study and being competent to give informed consent [ 54 , 64 ]. Obtaining verbal consent may be one way to help ensure participants are exposed to consent information prior to enrolment in online research [ 54 , 59 ]. Telephone conversations allow researchers to use back-questioning techniques to help ensure participants have read and understood consent documents and the procedures, risks and benefits of a study.

As the ability to obtain face-to-face and verbal consent in internet research can be challenging, new and multiple strategies to ensure consent is informed are required. This may be particularly relevant if the research is anonymous or involves children and adolescents. One study reported how, during piloting of an online intervention, youth “didn’t express any concerns about why we were asking for sensitive information or what we would be doing with participant data” [ 54 , p. 1086]. The authors concluded that this indicated children and young people are generally not interested in reading formal informed consent materials or may not have the ability to understand these concepts. Alternative, tailored information available in a number of different formats (e.g., audio-clips, images, video or bullet-point summary) and readily accessible throughout the duration of the study (e.g., sent via email, attached to the survey) could be considered [ 54 , 63 , 71 ]. Researchers could also give participants the opportunity to discuss the study online via a study page [ 54 , 71 ]. However, one article did comment that providing extra measures and sources of information may not guarantee understanding, regardless of whether the research is conducted online or face-to-face [ 71 ]. Alternatively, researchers could employ a phased consent approach as reported by Sharkey et al. [ 71 ], where separate consent was taken from participants for study registration, participation and use of direct quotes, in order to increase participants’ understanding of the research and study protocol. The importance of maintaining consent when engaging research participants via social media was also discussed by Henderson et al. [ 72 ]. The authors noted how the dynamic nature of social media, including changes in the people involved in social networks over time, may alter the context of the initial consent. This raises questions regarding the ethical decision-making of researchers in social media-based research, and “whether there should be measures to check that consent continues to be given” [ 72 , p. 551].

Disparities in internet access and sample representativeness.

Some articles expressed concern over the ‘digital divide’, whereby internet-based recruitment strategies may limit the ability of researchers to reach groups disadvantaged by socioeconomic status or education, who lack internet access or digital literacy [ 36 , 54 , 59 , 74 ]. This may introduce bias and limit the representativeness of the study sample [ 60 , 75 ]. Conversely, some researchers argued that the digital divide was not a concern when recruiting young people online, given the high rates at which youth, including disadvantaged youth, use and access the internet [ 52 , 54 , 76 ].

Many articles commented on the representativeness of their online sample, with mixed findings. In some cases, samples recruited online were representative of the target population in terms of socioeconomic status and regional distribution [ 20 , 52 , 66 ] yet not regarding age or gender [ 20 , 66 , 77 ]. Online recruitment methods successfully engaged traditionally hard-to-reach populations such as regional, isolated or stigmatised groups [ 20 , 55 , 74 ] and allowed a broader sample to be recruited compared to offline methods of recruitment [ 55 , 78 ]. Others found online recruitment was associated with under-representation of some populations (e.g., minority groups, low socioeconomic status populations) and over-representation of others (e.g., tertiary educated) [ 20 , 49 , 66 , 79 ], although it was argued that similar sample biases are reported in offline recruitment methods [ 20 , 66 , 78 ]. One study reported similar demographic data for participants traced via Facebook and offline methods [ 46 ].

In most articles, sample representativeness was not addressed as an ethical concern but rather as a methodological limitation of the study design (e.g., [ 75 , 80 ]). However, two articles did highlight the need to justify using the internet to engage research participants [ 54 , 59 ]. They proposed that researchers should consider whether online methods are appropriate to engage and interact with research participants and which method (online or offline) will reach more of the target population. Care should also be taken to ensure that the chosen method of engagement is best for the participant, not the researcher, and to minimise the impact of disparities in internet access on participant inclusion or selection bias.

Incentives.

Three articles discussed the ethical concerns associated with offering incentives in research [ 44 , 62 , 81 ], yet only one focused on incentives in online research. Boydell et al. [ 62 ] aimed to recruit youth to online focus groups and was interested in offering an incentive. The authors were however concerned that requesting personal details from potential participants could compromise anonymity. As available literature provided no guidance on this issue, they opted not to offer an incentive, which they state, might have contributed to their poor online recruitment rates.

Risks to researchers.

Similar to participants, researchers may also be subject to privacy and safety risks when engaging participants online. While several articles reported interacting with participants online, for example via Facebook messaging features or discussion boards, only one study described the potential impact of this on the researcher and how they protected their personal privacy by creating a new Facebook account used solely for contacting participants [ 43 ]. Another study briefly acknowledged that sensitive research on adolescent self-harm may include risks for both participants and researchers, yet did not discuss this further [ 71 ].

What ethical guidelines are available and being used to inform internet research?

Guidance offered by academic articles..

The academic literature search identified a small number of articles offering ethical guidance when engaging research participants online. This is best illustrated in three case studies [ 54 , 59 , 71 ] where the authors list and present solutions to ethical issues encountered when recruiting young people on social networking sites and discussion forums. Other articles also provided ethical guidance by discussing the challenges encountered, the amendments made to study design and the strategies employed when using email in family research [ 74 ], recruiting participants into online focus groups [ 60 , 62 ] and tracing research participants online [ 44 , 47 ]. Several articles called for researchers to publish the methodological and ethical challenges they encounter when engaging research participants online and how these issues can be resolved [ 44 , 59 , 71 , 72 , 74 ], particularly when tracing participants [ 45 , 47 ] and engaging adolescents [ 73 ].

Guidelines and resources cited by academic articles.

Of the 58 research articles identified in the review, only three [ 35 , 37 , 82 ] described following internet-specific ethical guidelines when designing or undertaking their online research: these included professional guidelines produced by the Association of Internet Researchers (AoIR) [ 83 ] and the American Psychological Association (APA) [ 84 ], and practical guidance offered in academic literature [ 71 , 85 ]. Some articles [ 20 , 42 , 54 , 65 , 86 ] reported consulting ethical guidelines produced by their institutional review board [ 56 ], country of origin (e.g., National Statement on Ethical Conduct in Human Research [ 27 ], Belmont Report [ 87 ]) or the World Medical Association [ 88 ]. However, none of these provide specific ethical guidelines on the conduct of internet research. While the Belmont Report clearly precedes internet research, other more recent guidelines do not refer to the internet or online research. A small number of internet-specific ethical guidelines were recommended by articles [ 59 , 64 , 71 ], including professional guidelines published by the AoIR [ 83 , 89 ], APA [ 84 ] and the British Psychological Society (BPS) [ 90 , 91 ]. Other internet-specific ethics resources were also briefly mentioned [ 92 – 96 ].

Available guidelines.

A grey literature search identified a number of guidelines published from January 2006 to February 2016 specific to the ethical conduct of internet research. These included five professional guidelines developed by government bodies, societies and collaborative academic working groups (see Table 3 ) and ten university guidelines (see Table 4 ). Other resources included book chapters and websites.

https://doi.org/10.1371/journal.pone.0204572.t003

https://doi.org/10.1371/journal.pone.0204572.t004

Regarding professional guidelines, the most widely cited ethical guidelines for internet research are those published by the AoIR [ 83 ] and the BPS [ 90 , 97 ]. These offer broad advice to help researchers and research ethics committees make ethical decisions across all forms of internet research. They do not prescribe a code of practice or a ‘rule book’ but instead advocate for a flexible, case-based approach. Both recognise that the guidelines should not be considered as complete and that ethical decision-making will continue to evolve as new online tools are developed and new issues emerge. Produced in the USA, the AoIR guidelines briefly describe ongoing dilemmas in internet-based research before listing a set of guiding questions that should be considered when undertaking or reviewing online research methods. The document provides a basic overview of ethical considerations applicable to all types of internet research. While it does not specifically mention recruiting, retaining or tracing participants, it does raise key ethical concerns applicable to recruitment and outlines particular issues that may arise in online research with minors or vulnerable persons. Many of the ethical considerations listed in the AoIR guidelines are explored in more detail in the BPS guidelines, particularly regarding active recruitment of research participants. The BPS guidelines also provide recommendations and practical advice to guide ethical decision-making. These guidelines do not refer to child-specific ethical issues other than briefly stating that parental consent procedures will likely need to be obtained offline.

The grey literature search identified other professional guidelines not cited by articles identified in the review. Produced in Australia, Clark et al. [ 101 ] provide comprehensive advice for the use of digital data in research. Predominantly focusing on research using ‘big data’ rather than the direct involvement of participants, each issue is discussed in detail with examples and questions for consideration. The document also offers guidance to research ethics committees about ethical review processes. Produced in Norway, The National Committee for Research Ethics in the Social Sciences and the Humanities (NESH) guidelines [ 99 ] provide a brief discussion of ethical issues common to internet research. This does not give explicit guidance on how to overcome these issues but highlights how researchers must keep these issues in mind while continuing to follow general, fundamental ethical principles. The guidelines also include a section on protecting children in online research and emphasise the importance of obtaining parental consent and verifying age. Similar issues are raised in guidelines produced by the USA Secretary’s Advisory Committee on Human Research Protections (SACHRP) [ 98 ], where regulatory and ethical considerations pertaining to internet research are discussed, including online recruitment.

The grey literature search identified several universities, predominantly within the USA and UK, providing publicly accessible guidance on the ethical use of the internet in research. The content of the university guidelines varied widely and included comprehensive guidelines (e.g., [ 96 , 109 ]), general procedures and policies regarding recruitment, data collection and data storage (e.g., [ 104 ]) and resources that reiterate the AoIR guidelines (e.g., [ 102 ]). Guidelines developed by universities were often aimed at researchers and developed by ethics committees and review boards, to provide step-by-step procedural guidance to assist with ethical review processes. The search also identified one guideline produced by a university hospital [ 108 ] providing ethics-based recommendations and protocols for social media-based research, including online tracing. While some guidelines discussed ethical issues specific to online research with children, most did not. Two guidelines from universities in the USA reiterated the Children’s Online Privacy and Protection Act (COPPA), a federal law that requires verifiable parental consent if researchers collect personal information from children under 13 years of age.

Other resources describing the ethical issues of online research were also identified in the search. Several book chapters were identified [ 92 , 94 , 95 , 111 ]. These provide examples of online research methods and discuss common ethical issues, rather than offering procedural guidance. An online entry in the Stanford Encyclopaedia of Philosophy [ 112 ] provides a detailed discussion of key ethical issues in internet research including a verifying age and obtaining consent with minors. Several research ethics blogs and blog posts [ 113 – 115 ] and an online training program [ 93 ] were also found.

This review is the first attempt to identify and integrate literature on the ethics of using the internet to engage participants in family and child research. The review is timely in the context of changing communication patterns, increased social mobility and a research environment with limited funding. Communicating via the internet has rapidly emerged as the ‘new normal’ in everyday life; a development that has extended to the research world. Researchers (and, by extension, ethics committees) have a number of ethical concerns when engaging participants online. Some of these apply when engaging any research participant online, such as protecting participant privacy and confidentiality, obtaining consent and disparities in internet access. Engaging minors online raises additional ethical concerns and considerations, including parental consent, age verification and participant vulnerability. While these issues highlight some overlap between offline and online methods of participant engagement, the ‘visible’, far-reaching and dynamic nature of online platforms, especially social media, can inflate risk and introduce new challenges. Clearly, there are specific nuances of the online environment that the research community should be aware of. However, as highlighted in this review, many research articles do not report the ethical issues associated with engaging research participants online, and few refer to internet-specific ethical guidelines.

The review identified three unique ethical issues to be considered when engaging minors in research online. The first relates to the ethical and practical complexities of obtaining parental consent online. Parental consent serves to respect children’s developing autonomy and to provide for their protection [ 27 ], although in some cases may not be appropriate or protective. Inconsistent approaches and ambiguities in defining an adolescent, a mature minor and minimal risk research have led to extensive debate on the ethics and value of parental consent [ 116 – 118 ]. As recognised in this review, parental consent regulations differ by location, participant age, and research design and context, and are subject to case-by-case interpretation by ethics committees [ 119 , 120 ]. Academic researchers used a variety of methods to record parental consent. Limitations were reported for both offline and online procedures, and many authors noted a lack of guidance on ethical best practice. This was reflected in the grey literature search, which provided no formal guidance on how to document parental consent online. Instead, professional guidelines suggest researchers utilise offline consent procedures [ 90 , 99 ] while one university guideline recommends limiting online research with minors to minimal risk research that qualifies for a waiver of parental consent [ 103 ]. Guidelines on ethical best practice for obtaining parental consent online are clearly needed. In the interim, researchers and ethics committees may seek guidance from literature identified in this review [ 59 ] and elsewhere [ 4 , 121 ].

The second unique issue of verifying participant age was an important yet challenging aspect of engaging minors in research online as young people may misrepresent their age to participate. Articles suggested several strategies to verify age, including directly contacting the participant or their parent. However, depending on the nature and context of the study, this may be inappropriate or unfeasible. Others suggested validating participant age by reviewing social media profiles. This raises further concern for participant privacy and may not be a valid approach if the minor has falsified their age (e.g., Facebook users must be at least 13 years old to create an account). Articles did not explicitly discuss the ethical implications of inadvertently engaging younger or underage participants in research, despite the potential for them to be exposed to sensitive or age-inappropriate content. Guidance on this issue is mixed: one guideline [ 98 ] suggests researchers include fact-checking measures in online research instruments or employ age verification software; others suggest limiting online research with minors to minimal risk research [ 103 ] or to conduct the research offline [ 99 ].

The third issue identified in the review relates to children’s vulnerability in online research. Young people are often referred to as ‘digital natives’: a younger generation born into a ubiquitous digital environment who have used the internet, social media and mobile devices from an early age [ 122 ]. However, young people may also be digitally naïve [ 123 ], openly disclosing personal and potentially sensitive information without apparent concern for their privacy, without understanding or considering the permanence or far-reaching nature of online content, and without intending for their information to be used by others. Internet users are largely unaware of targeted advertising practices and the extent to which their online information and behaviours are collected and used by third parties [ 124 ], including researchers [ 125 ]. Privacy and data use policies are outlined in click-to-agree contracts and in website Terms of Service. Few users read or comprehend these often lengthy and indecipherable agreements and few understand how to protect their privacy online [ 126 ]. Discourse on how these issues apply in research is growing [ 127 ], yet literature exploring whether privacy risks are exacerbated for minors and vulnerable groups online is limited. Due to a lack of maturity, understanding, interest and/or digital literacy, it is possible that children and adolescents are less inclined than adults to read privacy and data use policies and understand how their online information is collected and used. Yet, this demographic group are prolific internet and social media users, and are increasingly encouraged to share their personal information [ 128 ]. This brings into question the appropriateness of researchers using this information to target individuals to participate in research, as is increasingly occurring.

Concerns were also raised about the possibility of participants, potentially those who are young or vulnerable, unwittingly ‘outing’ themselves as research participants online. This may occur due to a lack of knowledge regarding privacy settings, features and the reach of online platforms. While this may be no different to offline research where participants may disclose their participation to others, the audience is much more far-reaching in the online space and individuals may lose control of their information once they ‘release’ it online. These concerns require researchers to be transparent and openly inform prospective participants about potential risks to their privacy, confidentiality and anonymity online, as suggested by articles included in the review [ 43 ] and in recent literature [ 125 , 129 ].

An additional issue that received minimal attention in the review but which warrants further discourse is whether participants, particularly minors, are sufficiently informed in online research. One article noted that adolescents were generally uninterested in reading study information and informed consent materials [ 54 ]; an observation that has been reported by others engaging participants online and offline [ 130 , 131 ]. Children and adolescents may also misunderstand the information that is presented to them, which can be difficult for researchers to detect [ 132 ]. While researchers are advised to spend time with prospective participants and orally explain the research to them [ 133 , 134 ], this is often not possible or practical in online research. That young people are uninterested in consent materials or cannot understand them is ethically problematic in any research setting. These concerns may escalate in online research as parental consent is commonly waived, participants are separated physically and temporally from the researcher, and the immediacy of online platforms may prevent careful consideration of participation.

Despite recruiting participants online, many articles in this review obtained consent via traditional means (e.g., by post, face-to-face). The ongoing reliance on offline consent procedures may reflect concern for participant comprehension in online settings. However, the inability to assess whether participants are truly informed is not confined to online research (e.g., postal surveys), and articles often compared the deficiencies of online consent procedures against an idealised view of the communication than can, but often does not occur in face-to-face consent. Articles suggested several strategies to improve participant comprehension online, including video conferencing and phased consent. Some recognised the advantages of obtaining verbal consent and assessing comprehension via telephone, although we question the viability of this approach with large samples and its utility in anonymous research. Emerging evidence indicates that testing adolescents on their research rights and risks during the online consent process can improve study comprehension [ 135 ]. Further discourse on the effectiveness of alternative online approaches are warranted.

Our review has identified several insights and gaps in the academic literature that are worth noting. Firstly, while researchers have sought new ways to engage participants online, a continued reliance on traditional offline recruitment methods remains. The use of offline and online methods may help overcome technological barriers such as the digital divide but may also reflect uncertainty regarding the effectiveness of solely using the internet. Clear evidence for effectiveness is currently hampered by an absence of, or lack of detail in, reporting the success of recruitment, retention and tracing methods. Reporting ethics approval processes and how consent is obtained online could also be improved. The absence of this information does not ease concerns regarding the validity and credibility of online recruitment and online consent. We encourage researchers to report response metrics and/or recruitment source data as well as consent procedures. Researchers reporting results for internet surveys may wish to refer to Eysenbach’s checklist [ 136 ].

Over half of the articles included in the review did not discuss ethical issues beyond general ethical procedures. The limited discussion of ethical concerns aligns with that reported by Henderson et al. [ 72 ], who reviewed studies using social media to involve children or young people in research. They found articles were similarly silent on ethical issues. It is unclear why ethical issues are not acknowledged or at least not reported. It is possible that researchers view the ethical issues of engaging participants online as similar to offline methods. This has implications for research integrity and participant safety as some issues and risks posed online are different to traditional offline methods. Alternatively, researchers may not expect to comment on ethical issues if their study has received approval by a governing ethics committee, and publication word limits may preclude detailed description of ethical issues. Like Henderson et al. [ 72 ], we do not consider studies that are silent on ethical issues as unethical. Given the increasing use of online methods, the research community will greatly benefit from more detailed documentation of the ethical and methodological issues encountered or considered and the actions taken to address them.

We recognise that many of the ethical concerns identified in this review pertained to online recruitment. Using the internet to retain or trace participants was not as widely used or at least not commonly reported. This could be due to limitations in our search strategy, as articles may not explicitly refer to retention and tracing in their title, abstract or key words. Alternatively, it could reflect the smaller number of longitudinal studies (which require retention and tracing) relative to cross-sectional studies, or that use of the internet in this way is an emerging method not yet in widespread use. Nonetheless, it is surprising that so few retention and tracing studies were identified given the recognised difficulty in maintaining research cohorts in longitudinal research [ 137 , 138 ]. It is unclear whether the internet is not used for this purpose because researchers and/or ethics committees view it as problematic and unethical, or because they are unfamiliar with such methods. Most articles that reported online retention used email to maintain contact with participants, which was not considered to be ethically concerning. Other online retention strategies involving social media have been reported, such as researchers ‘friending’ participants on Facebook [ 139 , 140 ]. While these strategies can be effective at retaining adolescents in research, they raise ethical issues regarding participant confidentiality, the participant-researcher relationship, and potentially accessing information beyond what participants originally consent to. Most tracing studies identified in this review used social media to search for participants lost to follow-up, with many authors providing comment on the ethical and methodological considerations undertaken. Researchers interested in tracing participants via social media in the future will benefit from consulting these articles and other relevant literature [ 25 , 141 ]. Given its effectiveness, tracing participants via social media is likely to become more popular among researchers, but the lack of ethical guidance for this method is concerning.

Lastly, we show that most researchers do not refer to internet-specific ethical guidelines when reporting online recruitment, retention or tracing methods. Previous research has identified a perception from researchers and ethics committee members that there are few guidelines available to inform internet research [ 142 ]. Our review shows internet-specific ethical guidelines are available, yet researchers are largely unaware of them. Existing guidelines provide an overview of common ethical concerns, many of which are identified in this review, that are applicable when recruiting participants online. They do however vary in their content, scope and guidance, which may require researchers and ethics committee members to familiarise themselves with each resource and use the guidelines collectively when planning or reviewing online research. Most guidelines do not specifically comment on actively engaging research participants online, particularly for retaining or tracing participants via social media or for recruiting minors online.

Since conducting our literature searches in early 2016, additional internet-specific guidelines have emerged [ 143 – 147 ]. These guidelines generally focus on social media content as data rather than directly engaging participants online. Guidelines specifically addressing social media recruitment have also been developed [ 125 , 148 ], providing case studies and recommendations for both researchers and ethics committees. Given the dynamic and diverse nature of the internet, the majority of internet-specific ethical guidelines are purposefully broad, flexible and applicable to a range of online research methods. While there is a strong argument for guidelines to remain broad, a more structured procedural guideline that specifically and clearly outlines common methodological and ethical considerations when recruiting, retaining and tracing participants, including children, online will be well received.

Limitations

This review has several limitations. While we searched six academic databases and aimed to be inclusive with terminology, there may be relevant studies and articles that were not captured by the search strategy. For example, articles may describe ethical issues without referring to ‘ethics’ in their title, abstract or key words. Studies using online retention and tracing strategies may also not explicitly report this, as discussed, which may account for the few retention and tracing studies identified. While Facebook is a common research tool, the high proportion of studies using Facebook compared to other social media platforms may be due to this being the only platform specifically named in our search strategy. We recognise articles in other disciplines not included in this review would inform family and child research. We also recognise the limitations of the grey literature search, which was neither exhaustive nor systematic, with results limited to the first 100 hits. Google is not well suited for complex search queries and results are retrieved by popularity; therefore, relevant ethical guidelines may have been missed.

This scoping review provides a comprehensive overview of the ethical issues that arise when engaging participants in family and child research online and the available ethical guidance on online research. It serves as a useful resource for researchers and ethics committee members who are considering the ethical appropriateness of research in this context. All in all, using the internet and social media to recruit, retain and trace participants is possible, but must be harnessed appropriately. This requires researchers and ethics committees to be cognisant of a range of ethical issues, including the unique challenges associated with engaging minors online, and to carefully consider how these issues apply when planning, conducting and reviewing research.

Our review shows that researchers consider themselves primarily responsible for ensuring internet research is conducted ethically, yet it remains unclear to what extent researchers are aware of and appropriately informed of the specific ethical issues associated with engaging research participants online, particularly minors. Ethical guidelines are essential to consistent and high-quality decision-making, yet the lack of reported use of available guidelines and the scarcity of academic literature describing ethical concerns means research and ethical review are potentially occurring without suitable guidance. Increasing the research community’s understanding of the contextual and ethical challenges of engaging participants online is clearly required. This can be achieved by encouraging broad dissemination and use of current guidelines and resources (e.g., [ 83 , 97 , 125 ]) across research institutes and ethics committees. We also encourage researchers to provide more detail in academic articles when reporting on the internet as a research tool, including response metrics, ethical approval and consent procedures, and methodological and ethical considerations, particularly for research with children and adolescents. This review brings the ethical issues and guidelines presented in this review to the attention of the wider research community and promotes further discourse regarding the ethical conduct of recruiting, retaining and tracing participants online in family and child research.

Supporting information

S1 file. additional search limits applied to scopus database..

https://doi.org/10.1371/journal.pone.0204572.s001

S2 File. Academic articles data.

https://doi.org/10.1371/journal.pone.0204572.s002

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Netiquette: Ethic, Education, and Behavior on Internet—A Systematic Literature Review

Rebeca soler-costa.

1 Department of Education Sciences, University of Zaragoza, 50009 Zaragoza, Spain; se.razinu@relosr (R.S.-C.); se.razinu@iruamm (M.M.-M.)

Pablo Lafarga-Ostáriz

Marta mauri-medrano, antonio-josé moreno-guerrero.

2 Department of Didactics and School Organization, University of Granada, 51001 Ceuta, Spain; se.rgu@oneromja

In this article, an analysis of the existing literature is carried out. It focused on the netiquette (country, date, objectives, methodological design, main variables, sample details, and measurement methods) included in the Web of Science and Scopus databases. This systematic review of the literature has been developed entirely according to the Preferred Reporting Items for Systematic Reviews (PRISMA). The initial search yielded 53 results, of which 18 exceeded the inclusion criteria and were analyzed in detail. These results show that this is a poorly defined line of research, both in theory and in practice. There is a need to update the theoretical framework and an analysis of the empirical proposals, whose samples are supported by students or similar. Knowing, understanding, and analyzing netiquette is a necessity in a society in which information and communication technologies (ICT) have changed the way of socializing and communicating. A new reality in which there is cyber-bullying, digital scams, fake news, and haters on social networks.

1. Introduction

Billions of people have taken an active part in technological development over the past decade. Social networks have been the maximum exponent of a digital revolution that has meant a before and after in terms of how people communicate and collaborate [ 1 ]. A new reality that has been mutating from the original Facebook, YouTube, and Flickr [ 2 ] to become, for example, a relevant strategy in election campaigns [ 3 , 4 , 5 ]. The perfect framework for its expansion has been mobile devices, especially smartphones [ 6 , 7 ]. Both its technical conditions and its rapid incorporation into almost any area of life today [ 8 ] have made it the perfect nexus. In fact, nowadays it is not surprising that applications such as Instagram [ 9 ], or others more associated with instant messaging [ 10 ], are among the most frequented practices when accessing these mobile devices [ 11 ].

The popularity and growth of social networks can be understood by the paradigm shift that brought about their birth, as previously the World Wide Web was based on limited usability. Its appearance meant that users were already able to create, modify, share, and discuss existing content on the Internet [ 12 ]. Consequently, the attractiveness of using these digital media was no longer governed only by the content, but also by the new possibilities of participation they offered [ 13 ]. Although it has not been total, as the digital divide is still present [ 14 , 15 , 16 , 17 ], one of the technological consequences of the second decade of the 21st century has been the easy access to these new opportunities [ 18 ]. Despite cultural differences and resistance [ 19 ], it is clear that the option of being part of and participating in these digital communities [ 20 ] has been reduced to a couple of keystrokes.

This new digital map, which over the years has unlocked new horizons, has altered such basic habits as what to take with you when you leave home: wallet, keys, and smartphone [ 21 ]. This is an everyday action that can be understood in the face of the digital approach to modern life [ 22 ] and which perfectly contextualizes the rise of digital marketing [ 23 ]. Scientific production in this area has developed considerably [ 24 , 25 ] in response to the need to understand, know, and adapt commerce in view of the new forms of relationship and consumption that have emerged as a result of social networks [ 26 , 27 ]. A new ecosystem implies an almost total rethinking of roles [ 28 ], as reflected in the so-called influencers [ 29 ], and of strategies in an environment that is struggling to obtain the greatest dissemination and impact, including for health reasons [ 30 ].

This is an interest that responds to a historical moment in which social networks offer the right possibilities to cover everything from the individual to the social [ 31 ], including work [ 32 ]. Some of the main characteristics that may justify this phenomenon are: being a quick and easy alternative to access a wide range of information [ 33 , 34 ], offering almost instantaneous interaction and communication [ 35 ], opening up business possibilities in global environments and not just local ones [ 36 ], and even serving as a parallel strategy to find out preferences and interests in particular issues [ 37 ]. These applications accompany the new digital habits, especially among the young, whose interest in the more classic media is declining and who are developing new digital skills in areas such as content consumption [ 38 ].

The so-called digital competence (DC) is the theoretical approach to this new panorama specifically in the educational field [ 39 ]. A concept that corroborates the impact of digital technology on personal development [ 40 ], which means that educational institutions must rethink their approach in light of the new needs and demands which this generates [ 41 ]. Since its incorporation in 2006, scientific interest has been increasing and evolving. Approaches have sought to explore key issues such as what the DC is in a changing technological context [ 42 ], particularly in light of legislative frameworks [ 43 ]. The most evaluative orientation has been toward understanding the level of DC in different educational contexts: educational stages [ 44 , 45 ] or agents [ 46 ]. Perspectives that respond to a context where the integration of ICT in schools occurs from the technical [ 47 ] to the methodological [ 48 ], especially during the Covid-19 pandemic [ 49 ].

Digital media can contribute, as in the educational field [ 50 ], but their use can also lead to harm. Recently, problems have emerged such as addiction to smartphones, known as nomophobia [ 51 ], whose relationship with anxiety and stress [ 52 ] shows that ICTs also have a negative side. Cyber-bullying [ 53 , 54 ] is another example of how the use of technology can be negative, similar to the anonymity of social networks as a weapon of hate [ 55 ]. Information, one of the main reasons for the use of networks, is also under scrutiny following the rise of fake news [ 56 ] and the use of user data is also controversial [ 57 ]. At the same time, consumer advocacy is growing [ 58 ], reflected in the presence of cookies on any website and “integrated shopping” in free downloadable applications.

This new framework, with its possibilities and repercussions [ 59 ], gives rise to another approach more related to how they have used: netiquette. The origin of this term, which is based on the link between the words Internet and label [ 60 , 61 ], emerges on the eve of the beginning of the 21st century and the expansion of the digital world. The Internet, as well as promoting access to knowledge or creating new professions, has created the non-face-to-face label. This can be seen in traditional face-to-face customs such as giving condolences, the development of which through social networks, especially Facebook, has become standardized [ 62 ]. A revolution that entails extrapolating civic norms from the face-to-face to the digital in a technologically interconnected world [ 63 ]. Guidelines, which are less or more assimilated, are present in couple relationships [ 64 ] or which guide the use of such essential tools as email [ 65 , 66 ] in work environments [ 67 , 68 , 69 , 70 ].

To talk about ethics or a social label is really to talk about education. It is therefore not surprising that in a context of constant inclusion of ICT in the classroom [ 71 ], netiquette is one of the areas that make up the DC. A key training requirement in current and future teachers whose preparation in the digital field continues to be analyzed [ 72 , 73 ], more so when it is a field in evolution since, above all, social networks are altering and promoting new digital habits in students [ 74 , 75 ]. In the case of the educational field, the pandemic has highlighted the role of ICTs [ 76 ], a reality which means understanding the digital label as part of human development in the 21st century. An approach that has been focused above all on students who have grown up with the digital [ 77 ] but which, in reality, is already inherent to anyone who has access to a mobile device with an Internet connection.

The present study is based on this new paradigm. Access to digital media is already a routine, even an addiction, and it is urgent to understand its new social patterns. In the educational field, especially in training, this idea is becoming increasingly present. This is due, on the one hand, to the progressive integration of ICTs into the teaching-learning processes and, on the other hand, to the impact of these changes in terms of defining what DC is and how to develop it in schools. For this reason, this work focuses on explaining the scientific reality of the term “netiquette” through a review of the literature in the main databases. This is an approach to finding out and understanding the state of research into labels in a universe marked by haters, cyberbullying, and fake news.

This systematic review is based on the analysis of existing literature in the Scopus and Web of Science (WoS) databases of the term netiquette. Its implementation has been developed in accordance with the Preferred Reporting Items for Systematic Reviews (PRISMA) [ 78 ] in order to answer the following questions. The structure of other publications in impact journals [ 79 , 80 , 81 ] has also been taken into consideration in order to follow models of analysis validated by experts. In turn, data from the studies analyzed are included, such as the country of origin, the date of publication, the main objectives, the methodological design, the variables considered, the details of the samples, and their scientific contributions to the area of research.

RQ1 What is the state of scientific production regarding “netiquette”?

RQ2 Has an interest in “netiquette” increased since the emergence of social networks?

RQ3 What is the scientific relationship between “netiquette” and the educational field?

2.1. Search Strategy

During the month of December 2019, a strategy was developed based on the search for articles that include the term “netiquette” in the title and that are part of two relevant scientific databases. Given the nature of this research, this restrictive criterion was chosen because otherwise the inclusion of articles that were not scientifically relevant to the research could be favored. In this sense, both terms were included in the Scopus and WOS search engines (WOS, BCI, BIOSIS, CCC, DIIDW, KJD, MEDLINE, RSCI, SCIELO), two scientific databases commonly used by experts and researchers and from which both JCR and SJR draw their information [ 82 ]. A single search criterion was established, the title of the article having to incorporate one of the two terms. This initial search yielded 53 manuscripts, although the final sample consisted of 18 references.

2.2. Inclosure Criteria

The channeling of the results to the final sample was carried out on the basis of the PRISMA protocol [ 78 ] for carrying out systematic reviews. The main objective was to analyze those articles that really focused on “netiquette,” and so it was established as a search criterion that this term should appear in the title of the articles to be analyzed later. Afterward, those results that were not articles were eliminated, both in WOS (n = 13) and in the SCOPUS database (n = 9). Of the 31 resulting articles, having searched two databases, those that were duplicated and were part of both were eliminated (n = 10). Once they were deleted, the information available on the remaining 21 articles was analyzed to check their eligibility, and they were read in full in cases of doubt about their subject matter. Finally, those whose complete text could not be found on the Internet were eliminated (n = 3), leaving the final sample reduced to 18 articles ( Figure 1 ). Articles included in the title “netiquette” or “netiquettes,” not repeated in the databases and with access to the full text.

Flow diagram of PRISMA Systematic Review about “netiquette.”

All the articles that have been considered for analysis were presented in English (n = 18). A consistent figure considering that more than half (n = 12) have been published from the UK (n = 4) or the US (n = 7). The time span between the oldest and most recent article is 23 years, covering 1995 and 2018. The focus of the articles can be grouped into two main blocks, empirical studies (n = 9) and theoretical approaches (n = 9), as shown in Table A1 and Table A2 respectively. The methodological disparity is clearly noticeable in the quantitative articles, with cases of quantitative (n = 4), mixed (n = 2), and qualitative (n = 1) approaches. ( Appendixe A and Appendixe B ).

3.1. Country

More than half of the articles studied were of Anglo-Saxon origin, specifically from the United Kingdom [ 61 , 64 , 70 , 76 ] and the United States [ 59 , 60 , 65 , 66 , 67 , 68 , 69 , 71 ]. Both cases stand out as they are the only countries that are repeated in terms of place of publication. The remaining (n = 6) come from European countries, such as Germany [ 78 ], Denmark [ 62 ] and Belgium [ 72 ]; from Asia, South Korea [ 54 ] and Jordan [ 74 ]; and from the American continent, Mexico [ 75 ]. Article [ 66 ] should be defined as having double authorship, from the United States and Canada. It should be noted that the United Kingdom [ 61 , 70 ] and the United States [ 59 , 60 , 65 , 66 , 67 , 68 , 69 ] are the only two countries that contribute articles of a theoretical nature, while those with an empirical focus are more spread out around the world.

There is a disparity in the date of publication of articles. With respect to the empirical ones, the oldest is from 2007 [ 72 ] and the most recent from 2018 [ 77 ], with only repetitions in 2017 [ 62 , 74 ]. In fact, all the articles are from the last decade [ 54 , 62 , 64 , 71 , 74 , 75 , 76 , 77 ] except the one from 2007. On the other hand, those theoretical approaches cover the period from 1995 [ 61 ] to 2018 [ 67 ] and there are also repetitions in 2011 [ 59 , 68 ]. By decade of publication, production stands out from 2000 to 2010 [ 65 , 66 , 69 , 70 ], from 2010 to 2020 [ 59 , 67 , 68 ], and from 1990 to 2000 [ 60 , 61 ]. Of the total, only four articles [ 62 , 67 , 74 , 77 ] have been published during the last five years.

On the one hand, the objectives of the empirical articles can be differentiated into those more linked to netiquette in educational contexts [ 54 , 71 , 72 , 74 , 75 , 77 ] and those oriented to more general personal or work environments [ 62 , 64 , 76 ]. In the majority of articles [ 54 , 62 , 64 , 72 , 74 , 75 , 76 , 77 ] the objective is based on knowing habits associated with the label on the net, in some cases, the objective is purely methodological [ 71 ]. As for the theoretical articles, the distinction is less clear. Up to 5 [ 59 , 65 , 66 , 67 , 68 ] focus on exposing or analyzing guidelines related to the correct use of electronic mail and two [ 60 , 61 ] provide more general guidelines for the Internet in its complexity. Only three are developed for specific contexts: hospital workers [ 68 , 69 ] and librarians [ 70 ].

3.4. Methodological Design

Two clear methodological designs can be distinguished: empirical articles [ 54 , 62 , 64 , 71 , 72 , 74 , 75 , 76 , 77 ] and theoretical articles [ 59 , 60 , 61 , 65 , 66 , 67 , 68 , 69 , 70 ]. From the first case, there is a new differentiation: quantitative supported by ad-hoc questionnaires [ 54 , 64 , 74 , 77 ], mixed approaches [ 62 , 72 ], and only qualitative [ 75 ]. One of the articles is purely methodological [ 71 ], so its scientific contribution is different from the rest. In the case of theoretical studies, they can be divided into purely theoretical [ 59 , 65 , 66 , 67 , 68 , 69 , 70 ] and literature reviews [ 60 , 61 ].

3.5. Main Variables

The variables found in the articles analyzed are very diverse. The quantitative variables explore online time and its possible relationship with cyber-bullying [ 54 ] or peer-to-peer tagging [ 64 ], university students’ knowledge of it [ 74 ], or its direct application through interaction with faculty [ 77 ]. In the case of those based on a mixed methodology [ 62 , 72 ], they are based on category analysis (attitude, motivations, unsubstantiated statements, etc.,) and are interspersed with other numerical quantitative variables (questions, number of visits to the forum, number of times they read what is published in the forum, etc.,). The qualitative article [ 75 ], with a socio-historical perspective, is based on categories such as “moral practice,” “communities of practice,” and “netiquette.”

3.6. Sample Details

The samples in half of the articles analyzed [ 54 , 62 , 64 , 71 , 72 , 74 , 75 , 76 , 77 ] are very varied. They range from small groups of 34 secondary school students [ 75 ] to 992 couples [ 64 ] or 2849 students and teachers [ 77 ]. The educational context of the samples is relevant, as more than half [ 54 , 71 , 72 , 74 , 75 , 77 ] of the articles are composed of students or graduates. There are also undefined figures when exposing themselves based on groups [ 76 ] and samples where the only requirement was to have a Facebook account [ 62 ] or to have a partner [ 64 ].

3.7. Measurement

The instruments used in the articles analyzed cover quantitative [ 54 , 64 , 74 , 77 ], mixed [ 62 , 72 ], and qualitative [ 75 , 76 ] perspectives. In this sense, the quantitative instruments have been based on the development of questionnaires designed ad-hoc [ 54 , 64 , 74 , 77 ], the mixed ones have been questionnaires and subsequent coding, and the qualitative ones have employed interviewing and discourse analysis individually or through focus groups. The theoretical articles have not used instruments in their development.

4. Discussion

The last two decades have shown the capacity for technological development and the human ability to incorporate it into daily routines [ 9 , 10 , 11 , 31 , 32 , 35 ]. In the case of the Internet, its birth and evolution have meant a before and after in humanity [ 12 , 13 , 33 , 34 ], and has altered the way people communicate and collaborate [ 1 , 18 ]. Having and using a smartphone [ 21 ], even becoming addicted [ 51 ], or spending time on social networks [ 2 ] are new patterns of behavior in a society where digital skills are becoming essential [ 26 , 27 , 29 , 36 , 38 ]. So much so that in the educational field the relevance of the so-called DC [ 39 , 40 , 41 , 42 , 43 , 50 ] is increasing. In short, it is clear that these years have seen the birth of a new question that goes beyond ethics: how to behave on the Internet [ 20 , 28 , 37 , 38 , 60 , 61 ].

The analysis of the articles compiled through Scopus and Web Of Science, 18 of which finally passed the inclusion criteria set out through the PRISMA analysis process [ 54 , 59 , 60 , 61 , 62 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 74 , 75 , 76 , 77 ], leads to the following inferences. Despite the fact that the included literature covers a significant period of time, with a margin of several decades [ 60 , 61 , 62 , 74 , 77 ], the state of the search remains exploratory. There is a disparity between theoretical and empirical approaches, which accentuates the lack of a clear line of research. E-mail [ 59 , 65 , 66 , 67 , 68 ] and its network label are the main focus of theoretical articles, while in the case of empirical ones the characteristics of the samples are usually linked to educational [ 54 , 71 , 72 , 74 , 75 , 77 ] or training contexts.

In relation to the instruments indicated in the literature analyzed, the disparity in the methodologies and tools used stands out. The quantitative researchers base their analysis on ad-hoc questionnaires [ 54 , 64 , 74 , 77 ] whose scientific criteria are not clear, so it is complex to affirm their validity and that they are reliable. At the same time, the sample sizes are disparate, with figures that are either not very representative [ 62 , 75 ] or fairly representative [ 54 , 64 , 77 ]. On the other hand, methodologies supported by open questions, coded analysis of discussion groups, or field diaries have also been found. On no occasion are the objectives of two or more articles repeated or similar, each of the articles analyzed is supported by unique theoretical frameworks and instruments.

The results presented by the articles researched can be grouped into two aspects. Theoretically, the relevance of the correct use of electronic mail in the digital world is revealed through the presentation of guidelines and guides [ 59 , 65 , 66 , 67 , 68 ]. On the other hand, digital trends are shown, such as cyberbullying [ 54 ], mourning, and commemoration practices on Facebook [ 62 ], and the impact on couple relationships [ 64 ]. In the educational framework, there are complementary ideas such as the lack of knowledge of netiquette on the part of university students [ 74 ] and the improvement in the quality of discussion in forums when guidelines of this type are provided previously [ 72 ].

5. Conclusions

Considering the results found in this work, it is consistent to conclude that netiquette is a field of study that is in its initial phase. The limited production in this line of research is very significant, especially in view of the existence of theoretical articles from more than two decades ago. It is complex to consider that there is a real interest in research in this area. Defining an ethic for a context that changes almost daily is complex, however, it is necessary to understand it if we want to improve the society. The DC [ 39 ] includes netiquette as a training demand, both from students and teachers, and it is understood in reality that it includes digital economic sectors, the rise of cyberbullying [ 54 ], or the establishment of nomophobia [ 51 ].

Different considerations can be made with regard to the starting hypotheses. Scientific production relating to netiquette is still at an early stage, without a defined theoretical basis despite being a term that has existed since before the 21st century. The birth of social networks has indeed increased the interest in netiquette, at least in terms of new habits and specific ethical factors. The works published in the past decade take into account the existence of these new media, a vision that is coherent with how they have become internalized in the routine of billions of people. The selection of students in training, whether current or recent, is a scientific criterion that reinforces the link between education and netiquette. Digital preparation is a fundamental pillar in personal, social, and professional terms. It is therefore inevitable to associate both areas in the present without thinking about the future, something that is set out in the current conception of the DC.

In relation to the limitations of the present study, existing in the studies based on the systematic review, there is a risk of having lost information because of the strategy of selection of the descriptor. Introducing the term netiquette, and its plural, as the only search elements were established in view of its presence in educational and legislative frameworks. Some of the lines of research in this area that are proposed are the creation of new instruments to find out the level of preparation of students, teachers in training, or teachers.

In conclusion, this study presents a number of theoretical and practical implications. The implications in the educational field, after having carried out the analysis, imply the need to revise the digital preparation of all the agents that form part of this field. The theoretical and practical synthesis set out in this work may mean a new scientific stage of an essential issue for the 21st century. Specifically, to cite more specific examples, it can lead to the beginning of a realistic consideration of digital needs, demands, and capacities in everyday tools such as e-mail, social networks, and even others close to home. For this reason, this study not only offers a new line of work to researchers or experts from the scientific community but can also have repercussions for anyone in the world with access to digital devices, with a special interest in the educational context.

Acknowledgments

We acknowledge the researchers of the research group AREA (HUM-672), which belongs to the Ministry of Education and Science of the Junta de Andalucía and is registered in the Department of Didactics and School Organization of the Faculty of Education Sciences of the University of Granada.

Empirical studies.

Theoretical studies.

Author Contributions

Conceptualization, P.L.-O., A.-J.M.-G., and M.M.-M.; methodology, M.M.-M. and P.L.-O.; software, A.-J.M.-G. and P.L.-O.; validation, A.-J.M.-G.; formal analysis, R.S.-C.; investigation, M.M.-M., A.-J.M.-G., R.S.-C., and P.L.-O.; data curation, A.-J.M.-G., M.M.-M., and R.S.-C.; writing—original draft preparation, M.M.-M., A.-J.M.-G., R.S.-C., and P.L.-O.; writing—review and editing, M.M.-M., A.-J.M.-G., R.S.-C., and P.L.-O.; visualization R.S.-C.; supervision, M.M.-M. and P.L.-O. All authors have read and agreed to the published version of the manuscript.

This research received no external funding.

Conflicts of Interest

The authors declare no conflict of interest.

Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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• Ethical Considerations in Research | Types & Examples

Ethical Considerations in Research | Types & Examples

Published on October 18, 2021 by Pritha Bhandari . Revised on May 9, 2024.

Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people.

The goals of human research often include understanding real-life phenomena, studying effective treatments, investigating behaviors, and improving lives in other ways. What you decide to research and how you conduct that research involve key ethical considerations.

These considerations work to

• protect the rights of research participants
• enhance research validity
• maintain scientific or academic integrity

Table of contents

Why do research ethics matter, getting ethical approval for your study, types of ethical issues, voluntary participation, informed consent, confidentiality, potential for harm, results communication, examples of ethical failures, other interesting articles, frequently asked questions about research ethics.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe for research subjects.

You’ll balance pursuing important research objectives with using ethical research methods and procedures. It’s always necessary to prevent permanent or excessive harm to participants, whether inadvertent or not.

Defying research ethics will also lower the credibility of your research because it’s hard for others to trust your data if your methods are morally questionable.

Even if a research idea is valuable to society, it doesn’t justify violating the human rights or dignity of your study participants.

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Before you start any study involving data collection with people, you’ll submit your research proposal to an institutional review board (IRB) .

An IRB is a committee that checks whether your research aims and research design are ethically acceptable and follow your institution’s code of conduct. They check that your research materials and procedures are up to code.

If successful, you’ll receive IRB approval, and you can begin collecting data according to the approved procedures. If you want to make any changes to your procedures or materials, you’ll need to submit a modification application to the IRB for approval.

If unsuccessful, you may be asked to re-submit with modifications or your research proposal may receive a rejection. To get IRB approval, it’s important to explicitly note how you’ll tackle each of the ethical issues that may arise in your study.

There are several ethical issues you should always pay attention to in your research design, and these issues can overlap with each other.

You’ll usually outline ways you’ll deal with each issue in your research proposal if you plan to collect data from participants.

Voluntary participation means that all research subjects are free to choose to participate without any pressure or coercion.

All participants are able to withdraw from, or leave, the study at any point without feeling an obligation to continue. Your participants don’t need to provide a reason for leaving the study.

It’s important to make it clear to participants that there are no negative consequences or repercussions to their refusal to participate. After all, they’re taking the time to help you in the research process , so you should respect their decisions without trying to change their minds.

Voluntary participation is an ethical principle protected by international law and many scientific codes of conduct.

Take special care to ensure there’s no pressure on participants when you’re working with vulnerable groups of people who may find it hard to stop the study even when they want to.

Informed consent refers to a situation in which all potential participants receive and understand all the information they need to decide whether they want to participate. This includes information about the study’s benefits, risks, funding, and institutional approval.

You make sure to provide all potential participants with all the relevant information about

• what the study is about
• the risks and benefits of taking part
• how long the study will take
• your supervisor’s contact information and the institution’s approval number

Usually, you’ll provide participants with a text for them to read and ask them if they have any questions. If they agree to participate, they can sign or initial the consent form. Note that this may not be sufficient for informed consent when you work with particularly vulnerable groups of people.

If you’re collecting data from people with low literacy, make sure to verbally explain the consent form to them before they agree to participate.

For participants with very limited English proficiency, you should always translate the study materials or work with an interpreter so they have all the information in their first language.

In research with children, you’ll often need informed permission for their participation from their parents or guardians. Although children cannot give informed consent, it’s best to also ask for their assent (agreement) to participate, depending on their age and maturity level.

Anonymity means that you don’t know who the participants are and you can’t link any individual participant to their data.

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, and videos.

In many cases, it may be impossible to truly anonymize data collection . For example, data collected in person or by phone cannot be considered fully anonymous because some personal identifiers (demographic information or phone numbers) are impossible to hide.

You’ll also need to collect some identifying information if you give your participants the option to withdraw their data at a later stage.

Data pseudonymization is an alternative method where you replace identifying information about participants with pseudonymous, or fake, identifiers. The data can still be linked to participants but it’s harder to do so because you separate personal information from the study data.

Confidentiality means that you know who the participants are, but you remove all identifying information from your report.

All participants have a right to privacy, so you should protect their personal data for as long as you store or use it. Even when you can’t collect data anonymously, you should secure confidentiality whenever you can.

Some research designs aren’t conducive to confidentiality, but it’s important to make all attempts and inform participants of the risks involved.

As a researcher, you have to consider all possible sources of harm to participants. Harm can come in many different forms.

• Psychological harm: Sensitive questions or tasks may trigger negative emotions such as shame or anxiety.
• Social harm: Participation can involve social risks, public embarrassment, or stigma.
• Physical harm: Pain or injury can result from the study procedures.
• Legal harm: Reporting sensitive data could lead to legal risks or a breach of privacy.

It’s best to consider every possible source of harm in your study as well as concrete ways to mitigate them. Involve your supervisor to discuss steps for harm reduction.

Make sure to disclose all possible risks of harm to participants before the study to get informed consent. If there is a risk of harm, prepare to provide participants with resources or counseling or medical services if needed.

Some of these questions may bring up negative emotions, so you inform participants about the sensitive nature of the survey and assure them that their responses will be confidential.

The way you communicate your research results can sometimes involve ethical issues. Good science communication is honest, reliable, and credible. It’s best to make your results as transparent as possible.

Take steps to actively avoid plagiarism and research misconduct wherever possible.

Plagiarism means submitting others’ works as your own. Although it can be unintentional, copying someone else’s work without proper credit amounts to stealing. It’s an ethical problem in research communication because you may benefit by harming other researchers.

Self-plagiarism is when you republish or re-submit parts of your own papers or reports without properly citing your original work.

This is problematic because you may benefit from presenting your ideas as new and original even though they’ve already been published elsewhere in the past. You may also be infringing on your previous publisher’s copyright, violating an ethical code, or wasting time and resources by doing so.

In extreme cases of self-plagiarism, entire datasets or papers are sometimes duplicated. These are major ethical violations because they can skew research findings if taken as original data.

You notice that two published studies have similar characteristics even though they are from different years. Their sample sizes, locations, treatments, and results are highly similar, and the studies share one author in common.

Research misconduct

Research misconduct means making up or falsifying data, manipulating data analyses, or misrepresenting results in research reports. It’s a form of academic fraud.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement about data analyses.

Research misconduct is a serious ethical issue because it can undermine academic integrity and institutional credibility. It leads to a waste of funding and resources that could have been used for alternative research.

Later investigations revealed that they fabricated and manipulated their data to show a nonexistent link between vaccines and autism. Wakefield also neglected to disclose important conflicts of interest, and his medical license was taken away.

This fraudulent work sparked vaccine hesitancy among parents and caregivers. The rate of MMR vaccinations in children fell sharply, and measles outbreaks became more common due to a lack of herd immunity.

Research scandals with ethical failures are littered throughout history, but some took place not that long ago.

Some scientists in positions of power have historically mistreated or even abused research participants to investigate research problems at any cost. These participants were prisoners, under their care, or otherwise trusted them to treat them with dignity.

To demonstrate the importance of research ethics, we’ll briefly review two research studies that violated human rights in modern history.

These experiments were inhumane and resulted in trauma, permanent disabilities, or death in many cases.

After some Nazi doctors were put on trial for their crimes, the Nuremberg Code of research ethics for human experimentation was developed in 1947 to establish a new standard for human experimentation in medical research.

In reality, the actual goal was to study the effects of the disease when left untreated, and the researchers never informed participants about their diagnoses or the research aims.

Although participants experienced severe health problems, including blindness and other complications, the researchers only pretended to provide medical care.

When treatment became possible in 1943, 11 years after the study began, none of the participants were offered it, despite their health conditions and high risk of death.

Ethical failures like these resulted in severe harm to participants, wasted resources, and lower trust in science and scientists. This is why all research institutions have strict ethical guidelines for performing research.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Normal distribution
• Measures of central tendency
• Chi square tests
• Confidence interval
• Quartiles & Quantiles
• Cluster sampling
• Stratified sampling
• Thematic analysis
• Cohort study
• Peer review
• Ethnography

Research bias

• Implicit bias
• Cognitive bias
• Conformity bias
• Hawthorne effect
• Availability heuristic
• Attrition bias
• Social desirability bias

Ethical considerations in research are a set of principles that guide your research designs and practices. These principles include voluntary participation, informed consent, anonymity, confidentiality, potential for harm, and results communication.

Scientists and researchers must always adhere to a certain code of conduct when collecting data from others .

These considerations protect the rights of research participants, enhance research validity , and maintain scientific integrity.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe.

Anonymity means you don’t know who the participants are, while confidentiality means you know who they are but remove identifying information from your research report. Both are important ethical considerations .

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, or videos.

You can keep data confidential by using aggregate information in your research report, so that you only refer to groups of participants rather than individuals.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement but a serious ethical failure.

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Mapping the terrain of open innovation in consumer research: insights and directions from bibliometrics.

1. Introduction

2. literature review, 3. materials and methods, 3.1. data processing, 3.2. data analysis, 4.1. content analysis, 4.1.1. decades of knowledge transfer, 4.1.2. analysis of the primary sources of publications and citations, 4.1.3. journal analysis, 4.1.4. author analysis, 4.1.5. most-relevant-keyword analysis, 4.2. descriptive analysis of the bibliographic data, 4.2.1. co-occurrence, 4.2.2. descriptive co-citation, 4.2.3. authorship connection, 5. discussion, 5.1. current trends in open innovation research: focus on consumer behavior, 5.2. an exploration and analysis of co-occurring terms, 5.3. the future of exploring complex relationships: oi and consumer behavior, 5.3.1. emerging trends and gaps in open innovation research, 5.3.2. identifying future research directions in open innovation: insights and examples, 6. conclusions, author contributions, institutional review board statement, informed consent statement, data availability statement, conflicts of interest.

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Siriwong, C.; Pongsakornrungsilp, S.; Pongsakornrungsilp, P.; Kumar, V. Mapping the Terrain of Open Innovation in Consumer Research: Insights and Directions from Bibliometrics. Sustainability 2024 , 16 , 6283. https://doi.org/10.3390/su16156283

Siriwong C, Pongsakornrungsilp S, Pongsakornrungsilp P, Kumar V. Mapping the Terrain of Open Innovation in Consumer Research: Insights and Directions from Bibliometrics. Sustainability . 2024; 16(15):6283. https://doi.org/10.3390/su16156283

Siriwong, Chukiat, Siwarit Pongsakornrungsilp, Pimlapas Pongsakornrungsilp, and Vikas Kumar. 2024. "Mapping the Terrain of Open Innovation in Consumer Research: Insights and Directions from Bibliometrics" Sustainability 16, no. 15: 6283. https://doi.org/10.3390/su16156283

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• Oakland University
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OUWB’s Afonso, Wasserman named Dean’s Distinguished Professors

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Two professors from Oakland University William Beaumont School of Medicine have each achieved the faculty rank of Dean’s Distinguished Professor. 

The Oakland University Board of Trustees approved the title changes recommended by Oakland University President Ora Hirsch Pescovitz, M.D., at its regular meeting on June 28, 2024.

Nelia Afonso, M.D., professor, and Jason Wasserman, Ph.D., professor — both from OUWB’s Department of Foundational Medical Studies — each received the title.

“This prestigious recognition is not merely a personal achievement but a testament to the collaborative efforts of our academic community,” said Afonso.

Wasserman shared similar thoughts.

“The thing that means the most to me is that it was the result of a nomination of at least 10 of my colleagues,” he said. “It’s a really nice honor.”

The rank of Dean’s Distinguished Professor was established in 2021 upon approval from the OU Provost and the OU Assistant Vice President of Academic Human Resources. It’s a permanent, honorific title that acknowledges contributions of employed, full-time, tenured faculty at the rank of professor.

According to the recommendations from Pescovitz, the designation “shall be afforded to awardees who have superior teaching skills that encompass the breadth and depth of their discipline, a distinguished record of public service, and scholarly, creative, and artistic achievements.”

‘Truly been a privilege’

Sarah Lerchenfeldt, Pharm.D., associate professor and interim co-chair, Department of Foundational Medical Studies, nominated Afonso.

In her nomination, Lerchenfeldt said Afonso “exemplifies the criteria” for the title.

“Since joining OUWB as a founding faculty member, she has demonstrated unparalleled dedication to medical education, significantly enhancing both the academic and practical aspects of these fields,” wrote Lerchenfeldt.

The nomination noted Afonso’s scholarly excellence, particularly in the domains of education, clinical skills, women’s health, and vaccine hesitancy. Lerchenfeldt said that Afonso was principal investigator for the Merck Investigator Studies program project called “Promoting Vaccine Confidence in Medical and Dental Students.” The project secured about $179,000 in funding.

The nomination also pointed to Afonso’s efforts to develop and refine the curriculum for OUWB’s Art and Practice of Medicine (APM) course, previous awards she received, commitment to service, and leadership roles with organizations like the Southeast Michigan Center for Medical Education.

“Dr. Afonso’s tenure at OUWB has been marked by a commitment to advancing medical education, research, and community health,” wrote Lerchenfeldt. “Her work not only reflects the values and mission of our institution, but also sets a benchmark for academic and professional excellence.”

Afonso said it has “truly been a privilege” to receive the title.

“I have been fortunate to be part of this medical school since its inception and I am grateful for the numerous opportunities provided that have fostered my growth as a physician, educator, and researcher,” she said. “I appreciate the dedication and commitment of our faculty and staff, whose support has been instrumental in implementing various curricular innovations.”

‘Invaluable member of OUWB faculty’  

Wasserman , who joined OUWB in 2013, was nominated by a group of 10 other faculty from the Department of Foundational Medical Studies.

They called him a “prolific and influential scholar” on several topics: homelessness, clinical bioethics, and Holocaust medicine.

“His scholarship and research range from core bioethics topics, such as autonomy and informed consent, to empirical research and qualitative inquiry into homelessness and medical ethics,” they wrote, and noted that he has published three books, 12 book chapters and supplements, 64 peer-reviewed journal articles, 22 editor-reviewed articles, and seven invited articles.

“Dr. Wasserman’s extensively cited research has contributed to important debates surrounding ethics in medical education, care for homeless individuals, pediatric ethical concerns, euthanasia, the rights of patients without decision-making capacity, and immunization policy,” wrote the nominators.

They also noted Wasserman’s roles in shaping the Medical Humanities and Clinical Bioethics (MHCB) curriculum, replacing traditional essay assignments with extemporaneous self-reflection videos, development of interactive iBooks, serving as a mentor to more than 50 OUWB students for their  Embark  projects, and developing a national training course in bioethics for the Arnold P. Gold Foundation.

The nominators also mentioned Wasserman’s history of service. In 2020, he was appointed as one of only two Provost Fellows for Faculty Diversity at Oakland University. In 2022, he was honored with the OU Founder’s Day Award for Faculty Excellence in Diversity, Equity, and Inclusion. He also chaired the admissions committee for five years, served as director of student professionalism for nine years, co-founded  Street Medicine Oakland , launched the Center for Moral Values in Health Medicine, and more.

And he has plans to do even more, including launching a new student-led journal on ethics, humanities, and social justice, and a health care ethics debate tournament that will be open to all OU students.  

“One of the reasons I came to OUWB was because it was a new school and there was a lot of opportunity to be entrepreneurial,” he said. “I didn’t want to go to some well-established place where the expectation is you teach your courses, you write papers, and otherwise just let things run.”

For more information, contact Andrew Dietderich, senior marketing specialist, OUWB, at [email protected] .

To request an interview, visit the OUWB Communications & Marketing  webpage .

This work is licensed under a  Creative Commons Attribution-NonCommercial 4.0 International License .

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Harris’ struggles with immigration policy expose political vulnerabilities

Sergio Martínez-Beltrán

Jasmine Garsd

A look at Vice President Kamala Harris’ record on immigration

Vice President Kamala Harris, center, along with Department of Homeland Security Secretary, Alejandro Mayorkas, Rep. Veronica Escobar, a Democrat from Texas, and Sen. Dick Durbin, a Democrat from Illinois, tour a U.S. Customs and Border Protection facility in El Paso, Texas, U.S., in June 2021. Bloomberg/via Getty Images hide caption

As Vice President Kamala Harris works to secure the presidential nomination of the Democratic Party next month, her role on immigration policy is now in the spotlight.

Minutes after the President Joe Biden announced he was dropping out of the race and was endorsing Harris, Republicans started attacking her record on immigration and border policy.

“Joe Biden has now endorsed and fully supports his ‘Borders Czar’ Kamala Harris to be the Democrat candidate for president,” Gov. Greg Abbott, R-Texas, posted on X . “I think I will need to triple the border wall, razor wire barriers and National Guard on the border.”

Conservatives have often referred to Harris as the Biden administration’s "Border Czar," incorrectly claiming she was tasked with repairing the border.

“Kamala had one job,” said Nikki Haley earlier this month at the Republican National Convention. “One job. And that was to fix the border. Now imagine her in charge of the entire country.”

In reality, that was not Harris’ job.

She was tasked by Biden in 2021 to examine the root causes of migration from Central America, including poverty, violence, and corruption. At that time, unauthorized migration came primarily from Mexico and Central America.

She was never tapped to head immigration policy, which is the responsibility of Homeland Security Secretary Alejandro Mayorkas, who oversees all agencies in charge of the enforcement of immigration laws.

Three years later, this role could be Harris’ Achilles' heel. Her role in pushing for Biden’s immigration proposals have disenchanted Democrats and immigrant rights groups.

“I do think there is an opportunity here for Vice President Harris to have a more hopeful message around immigration than even the Biden administration has had in the past,” said Adriel Orozco, a senior policy counsel with the American Immigration Council.

Biden’s policy proposals have included severely restricting most asylum claims at the border and expediting the removal of unauthorized migrants, something immigrant rights groups have opposed.

Suyapa Portillo, a professor of Chicano/a-Latino/a Transnational Studies at Pitzer College, says Harris should try to separate herself from the Biden administration’s “slow move towards immigration reform,” and from the message of deterrence that “represents that conservatism from the Biden administration and the Democratic Party — the old guard.”

Vice President Kamala Harris speaks from the South Lawn of the White House in Washington on Monday during an event with NCAA college athletes. This was her first public appearance since President Joe Biden endorsed her to be the next presidential nominee of the Democratic Party. Susan Walsh/AP hide caption

A changed immigration landscape

If Harris secures the presidential nomination, she will be facing a very different immigration landscape than back in 2021, when she was tasked with addressing its root causes.

Last year, unauthorized crossings at the U.S.-Mexico border hit an all-time high. In December 2023, the number of encounters reached nearly 250,000, according to U.S. Customs and Border Protection.

For the last four months, the number of migrants trying to cross illegally has dramatically dropped. That’s due in part due to Mexico’s enforcement, and Biden’s policies, which include severely restricting most asylum claims at the border .

But migration has diversified in the last few years. There is an unprecedented crisis of global displacement. When Harris was elected in 2020, 90% of immigration hailed from Mexico and Central America, according to an analysis by the Migration Policy Institute .

In 2023, only 49 percent of the encounters were with migrants from those four countries.

Today, immigrants arriving at the US Mexico border are fleeing from the crisis in Venezuela, the war in Ukraine and cartel violence in Ecuador, just to name a few.

A mixed track record

Harris’ record on immigration has been marred by policy blunders.

Her first international trip as vice president made clear her approach on immigration: addressing root causes to stop illegal migration.

In the summer of 2021, she traveled to Guatemala to meet with then-President Alejandro Giammattei. In a speech, she said that the Biden administration was committed to helping Guatemalans find “hope at home.”

But she also warned prospective migrants.

“I want to be clear to folks in this region who are thinking about making that dangerous trek to the United States-Mexico border,” Harris said. “Do not come. Do not come.”

Those three words: Do not come, were seen by many as a blunder . Latino advocates criticized the statement as paternalistic and tone-deaf, given the violent crises rattling the region.

For many immigrant advocates, that statement continues to haunt Harris’ candidacy.

“She needs to separate from Biden,” Portillo says. “She needs to speak to TPS holders and DACA holders for a plan for legalization, and a border plan that does not include throwing children in jail.”

But Harris has maintained that deterrence is essential: last year she announced $950 million in pledges from private companies to support Central American communities.

Judith Browne Dianis, the executive director of the D.C.-based civil rights organization Advancement Project, says Harris will now have to explain how she would tackle immigration if she were elected president.

“Is it a humanitarian response, or is there a criminalization response?” Dianis says. “We don’t need more criminalization. We don’t need a border wall. We need to get to the root causes. We need to make sure that people are taken care of.”

Criticism from GOP for not visiting the border enough

In early June 2021, Harris came under fire for not visiting the border. In an interview with NBC News , she was asked about Republican critiques.

“And I haven’t been to Europe,” Harris fired back. “I mean, I don’t understand the point that you are making.”

Her response was criticized by conservatives as disconnected and flippant towards border communities and agencies which have felt overwhelmed by the influx of migrants in recent years.

Harris’ first trip to the border came later that month, to El Paso, Texas. At a press conference there, she stated that migration “cannot be reduced to a political issue. We’re talking about children, we’re talking about families, we are talking about suffering.”

Earlier this year, Harris backed a Biden-endorsed bipartisan bill on border enforcement.

The measure would have added immigration detention beds, increased the number of U.S. Customs and Border Protection personnel and asylum officers, and funded technology to detect fentanyl smuggling at the Southern border. It passed in the Senate but failed to move forward after former President Donald Trump urged House Republicans to kill it.

But for many immigration advocates, Harris is their candidate.

Kerri Talbot, the executive director of the national advocacy organization Immigration Hub, called Harris a “strong defender and champion of American families, including their immigrant family members” in a statement Sunday.

“We have no doubt that she can step up to the challenge, counter Trump and JD Vance’s rhetoric and dark vision for democracy, and protect the progress we’ve made while delivering transformative change for our immigration system,” Talbot said.

Before VP, Harris was already pushing for reform

But Harris involvement with immigration goes way beyond her vice presidency, and her actions show a shift in policies.

When she was the district attorney in San Francisco, she backed a city policy that turned over to federal immigration authorities migrant juveniles suspected of committing a felony. In 2019, Harris’ campaign told CNN “this policy could have been applied more fairly.”

But as California’s attorney general, she had a different stance. In a 2015 interview with CBS Los Angeles, Harris said, “Unfortunately, I know what crime looks like. I know what a criminal looks like who's committing a crime. An undocumented immigrant is not a criminal.”

Harris became U.S. senator from California in 2017.

She was part of a Senate hearing on the Trump administration’s highly controversial separation policy, in which undocumented migrant children were separated from their parents at the U.S.-Mexico border, as a form of immigration deterrence. She questioned Trump officials, and said separating families can cause “irreparable harm.”

In 2019, she and several other Democratic senators reintroduced the Reunite Every Unaccompanied Newborn Infant, Toddler and Other Children Expeditiously (REUNITE) Act , “to expedite the reunification of separated immigrant families and promote humane alternatives for asylum-seeking immigrant families.”

When she ran for president in 2019, Harris unveiled an immigration plan that called for a path to citizenship for recipients of Deferred Action on Childhood Arrivals program, best known as DACA.

That’s similar to what the Biden-Harris campaign promised when they run in 2020. However, none of that has happened during the administration.