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Research Reports

2019 national survey of organ donation attitudes and practices.

The 2019 National Survey of Organ Donation Attitudes and Practices measured public opinion about organ donation and transplantation. This survey was completed by 10,000 U.S. adults. Key findings include:

  • People’s support for organ donation.
  • If they have signed up to be an organ donor and where.
  • Talking to family members about organ donation and their wish.
  • Beliefs about organ donation and transplantation.
  • If they want their organs used locally or wherever they are needed most.
  • Where they got their information on organ donation in the past year.

View and download the 2019 National Survey report (PDF - 3 MB) .

Supplemental Tables

  • Binary Response Tables (XLSX - 459 KB)  – Frequency tables with data bars/color coding in the 2019 National Survey report.  
  • Supplemental Tables (XLSX - 196 KB)   – Non-frequency tables in the 2019 National Survey report. 
  • Full Response Tables (XLSX - 510 KB)  – Proportions and confidence intervals for every response option for all 86 key survey questions.  

Listen to/watch a webinar recording on key findings of the survey. Slides from the webinar (PDF - 697 KB)  are also available.

Note: If you are using assistive technology, you may not be able to fully see all of the information in this PDF file. The Excel file with it has the same information for the National Survey of Organ Donation Attitudes and Practices, 2019: Report of Findings. For help, please email  [email protected]  or call 301-443-3300.

2012 National Survey of Organ Donation Attitudes and Behaviors

This report details the findings of the 2012 survey of the American public’s attitudes and behaviors about organ donation.

View and download the  2012 National Survey of Organ Donation Attitudes and Behaviors (PDF - 1 MB)  report.

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European Renal Association - European Dialysis and Transplant Association

Article Contents

Introduction, materials and methods, supplementary data.

  • < Previous

Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature

  • Article contents
  • Figures & tables
  • Supplementary Data

Michelle J. Irving, Allison Tong, Stephen Jan, Alan Cass, John Rose, Steven Chadban, Richard D. Allen, Jonathan C. Craig, Germaine Wong, Kirsten Howard, Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature, Nephrology Dialysis Transplantation , Volume 27, Issue 6, June 2012, Pages 2526–2533, https://doi.org/10.1093/ndt/gfr683

  • Permissions Icon Permissions

Transplantation is the treatment of choice for organ failure, but a worldwide shortage of suitable organs exists. We conducted a systematic review of qualitative studies that explored community attitudes towards living and deceased solid organ donation to inform strategies to improve organ donation rates.

Medline, Embase, PsycINFO and EconLIT were searched. Qualitative studies that explored community attitudes towards living and deceased solid organ donation were included. A thematic synthesis of the results and conclusions reported by primary authors was performed.

Eighteen studies involving 1019 participants were identified. Eight themes emerged. The decision to be an organ donor was influenced by (i) relational ties; (ii) religious beliefs; (iii) cultural influences; (iv) family influences; (v) body integrity; (vi) previous interactions with the health care system—medical mistrust, validity of brain death and fear of early organ retrieval; (vii) the individual’s knowledge about the organ donation process and (viii) major reservations about the process of donation, even in those who support organ donation.

This review of qualitative studies highlights that seemingly intractable factors, such as religion and culture, are often tied in with more complex issues such as a distrust of the medical system, misunderstandings about religious stances and ignorance about the donation process. Intervention that could be considered includes culturally appropriate strategies to engage minority groups, especially through religious or cultural leaders, and more comprehensively available information about the donation process and its positive outcomes.

Transplantation is the treatment of choice for severe organ failure. Despite this, and general recognition of organ donation as a global priority, demand for organs outstrips supply in virtually every country in the world [ 1 ]. Understanding the reasons why people do or do not donate can help inform policies to address this undersupply.

Previous studies have found a number of specific factors that are certainly associated with positive attitudes to organ donation, including education level, socio-economic status and being young [ 2–7 ]. It has also been found that people are more willing to make a living donation to a family member than a donation after death [ 8–11 ], while religious reasons were commonly cited as barriers [ 3 , 5 , 6 , 12 , 13 ].

People beliefs, however, often need to be understood through a broader narrative to uncover the interaction of multiple influences. Qualitative research is able to capture these narratives and their context and therefore helps us better understand the reasons why people hold particular views.

This study aims to synthesize the qualitative research on community attitudes towards living and deceased organ donation and the factors that influence these attitudes.

Study selection

Studies that explored community attitudes towards living and deceased solid organ (heart, lung, liver and kidney) donation using qualitative data through focus groups or interviews were included. Papers were excluded if they focussed on non-solid organ transplantation, were editorials or reviews or discussion papers that did not elicit perspectives from the community.

Literature search

MeSH terms and text words for community (public and population) were combined with terms relating to organ donation. The searches were carried out in Medline, Embase, PsycINFO and EconLIT (See Supplementary Appendix). We also searched reference lists of relevant studies and reviews, dissertation and thesis databases and transplantation journals.

Included studies were examined for study eligibility by both K.H. and M.J.I.

Comprehensiveness of reporting

There is no universally accepted quality appraisal tool for qualitative research, therefore two reviewers (M.J.I. and K.H.) independently assessed each study for comprehensiveness of reporting, based broadly on the COREQ framework [ 14 ], and any disagreement was resolved by discussion. The assessment included details about the research team, the study methods, context of the study, analyses and interpretations ( Table 2 ).

Synthesis of findings

We performed a thematic synthesis of the results and conclusions reported by the primary author. We extracted from each paper all text under the headings ‘results/findings’ and ‘conclusion/discussion’. These were entered verbatim into Hyperresearch 2.8.3 (ResearchWare Inc., Randolph, MA) software. For each paper, two authors (M.J.I. and K.H.) independently coded the text and recorded concepts that focussed on (i) participants’ attitude towards organ donation; (ii) the reasons for participants’ beliefs and (iii) the interpretations given of participant perspectives on organ donation. A grounded theory [ 33 ] approach to analysis was used and further developed through negative case analysis [ 34 ]. To achieve a higher level of analytical abstraction, the concepts were examined for similarities, variations and relationships with one another. This informed the development of an analytical schema of themes.

Literature search and study descriptions

Our search yielded 3498 citations. Of these, 3320 were ineligible after title and abstract review. Of the potentially eligible 178 studies, 18 studies involving 1019 respondents were eligible to be included in the review ( Figure 1 ). Fourteen studies explored factors influencing attitudes towards both deceased and live organ donation. Two studies focussed on attitudes to live organ donation only and two studies focussed on deceased donation. Six studies employed focus groups, eight studies used interviews and four studies used both focus groups and interviews.

Search results.

Search results.

Studies were conducted in the UK, Canada, USA, South Africa, Malta and Australia. Many of the studies included respondents from specific minority groups and focussed on barriers to donation ( Table 1 ).

Qualitative studies on community attitudes to organ donation

AuthorsStudy referenceCountry PopulationMinority group, Yes/NoData collectionDonor typeResearch topic
Alkhawari UK141Indo-Asians Muslims in the UKYesInterviews and focus groupsLive/deceasedAttitudes to organ donation and transplantation
Alvaro USA52Spanish-Hispanics in ArizonaYesFocus groupsLiveBarriers and opportunities for living kidney donation
Benghu Africa48Zulu traditional healers and religious leadersNoInterviewsLive/deceasedCultural norms and social structures and their influence on organ donation
Corlet Canada60Donors, non-donors and ambivalentNoFocus groupsLive/deceasedAttitudes to organ donation and transplantation
Davis UK120Black African/CaribbeanYesFocus groupsLive/deceasedAwareness and attitudes to organ donation
Davis UK120Black African/CaribbeanYesFocus groupsLive/deceasedInfluence of religion on organ donation and transplantation
Exley UK22Sikh communityYesInterviews and focus groupsLive/deceasedAttitudes and beliefs on organ donation
Fahrenwald USA21American Indian adults in an Indian Reservation in South DakotaYesSemi-structured interviewsLive/deceasedSociocultural perspective on organ donation
Griffin USA12African American dialysis patient’s care giversYesFace to face, interviews with KnowledgeKidney liveFactors that influence relatives decision about kidney donation
Lauri Malta57General communityNoFocus groupsDeceasedSocial representations the public has of organ donation
Moloney Australia29General communityNoFocus groupsLive/deceasedContradiction between endorsement and donation
Molzahn Canada14Canadian aboriginalsYesInterviewsLive/deceasedValues and beliefs on organ donation
Molzahn Canada39Chinese CanadiansYesInterviews and focus groupsLive/deceasedBeliefs on organ donation
Molzahn Canada40Indo-CanadiansYesInterviews and focus groupsLive/deceasedBeliefs on organ donation
Morgan UK14Caribbean descent in LondonYesInterviewsLive/deceasedHow ethnicity shapes perceptions of identity and belonging that underpin organ donation
Morgan USA156General community—family pairsNoInterviewsDeceasedReasons for not signing an organ donor card
Randhawa UK64Asians in the UKYesIn-depth interviewsLive/deceasedExamining the influences to attitudes on organ donation
Wittig USA10African American women in Southern USAYesInterviewsLive/deceasedCultural care beliefs, meanings and practices regarding organ donation
AuthorsStudy referenceCountry PopulationMinority group, Yes/NoData collectionDonor typeResearch topic
Alkhawari UK141Indo-Asians Muslims in the UKYesInterviews and focus groupsLive/deceasedAttitudes to organ donation and transplantation
Alvaro USA52Spanish-Hispanics in ArizonaYesFocus groupsLiveBarriers and opportunities for living kidney donation
Benghu Africa48Zulu traditional healers and religious leadersNoInterviewsLive/deceasedCultural norms and social structures and their influence on organ donation
Corlet Canada60Donors, non-donors and ambivalentNoFocus groupsLive/deceasedAttitudes to organ donation and transplantation
Davis UK120Black African/CaribbeanYesFocus groupsLive/deceasedAwareness and attitudes to organ donation
Davis UK120Black African/CaribbeanYesFocus groupsLive/deceasedInfluence of religion on organ donation and transplantation
Exley UK22Sikh communityYesInterviews and focus groupsLive/deceasedAttitudes and beliefs on organ donation
Fahrenwald USA21American Indian adults in an Indian Reservation in South DakotaYesSemi-structured interviewsLive/deceasedSociocultural perspective on organ donation
Griffin USA12African American dialysis patient’s care giversYesFace to face, interviews with KnowledgeKidney liveFactors that influence relatives decision about kidney donation
Lauri Malta57General communityNoFocus groupsDeceasedSocial representations the public has of organ donation
Moloney Australia29General communityNoFocus groupsLive/deceasedContradiction between endorsement and donation
Molzahn Canada14Canadian aboriginalsYesInterviewsLive/deceasedValues and beliefs on organ donation
Molzahn Canada39Chinese CanadiansYesInterviews and focus groupsLive/deceasedBeliefs on organ donation
Molzahn Canada40Indo-CanadiansYesInterviews and focus groupsLive/deceasedBeliefs on organ donation
Morgan UK14Caribbean descent in LondonYesInterviewsLive/deceasedHow ethnicity shapes perceptions of identity and belonging that underpin organ donation
Morgan USA156General community—family pairsNoInterviewsDeceasedReasons for not signing an organ donor card
Randhawa UK64Asians in the UKYesIn-depth interviewsLive/deceasedExamining the influences to attitudes on organ donation
Wittig USA10African American women in Southern USAYesInterviewsLive/deceasedCultural care beliefs, meanings and practices regarding organ donation

Comprehensiveness of reporting of included studies

The comprehensiveness of reporting of the included studies is described in Table 2 . All studies provided respondent quotations, details of sample sizes and a range and depth of insights into attitudes to organ donation. Twelve studies described the setting for data collection.

Comprehensiveness of reporting for included papers

Study [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ]
Personal characteristics
    Researcher identified
    Credentials
    Occupation
    Sex
    Experience and training
    Relationship with participants
Participants selection
    Sampling
    Method of approach
    Sample size
    No. and reason for non-participation
Setting
    Setting of data collection
    Presence of non-participants
    Description of sample
Data collection
    Interview guide
    Repeat interviews
    Audio/visual recording
    Field notes
    Duration
    Data or theoretical saturation
    Transcripts returned to participants
Data analysis
    No. data coders
    Description of coding tree
    Protocol for data preparation and transcription
    Use of software
    Reporting
    Respondent quotations provided
    Range and depth of insight into attitudes to organ donation
    Range and depth of insight into cultural diversity
Study [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ]
Personal characteristics
    Researcher identified
    Credentials
    Occupation
    Sex
    Experience and training
    Relationship with participants
Participants selection
    Sampling
    Method of approach
    Sample size
    No. and reason for non-participation
Setting
    Setting of data collection
    Presence of non-participants
    Description of sample
Data collection
    Interview guide
    Repeat interviews
    Audio/visual recording
    Field notes
    Duration
    Data or theoretical saturation
    Transcripts returned to participants
Data analysis
    No. data coders
    Description of coding tree
    Protocol for data preparation and transcription
    Use of software
    Reporting
    Respondent quotations provided
    Range and depth of insight into attitudes to organ donation
    Range and depth of insight into cultural diversity

Eight main themes emerged from the synthesis of the studies. These were relational ties, religious beliefs, cultural beliefs, family influence, body integrity, interaction with the health care system, knowledge and information about donation and the significant reservations for the support that many gave for organ donation.

Relational ties

I couldn’t understand anyone who could let their brother or their sister or their mother, father, continue to suffer or even possibly die when it’s within their means to help them. When you love someone that’s what you do. (Respondent) [ 12 ]

Religious beliefs

Our religion says do not waste things; if they [organs] can be utilized and used for the good of other people, then that item should not be thrown away. (Respondent) [ 31 ]
A large number of participants expressed their belief that Islam forbids organ donation, on the basis of statements from the Qur’an and traditional Islamic literature. (Author) [ 15 ]
‘ I don’t want half of my body buried and half to go to heaven. (Male Respondent) [ 19 ] After you die, you may go to another world. If you don’t have an eye, you cannot see. (Respondent) [ 27 ]

Cultural beliefs

Black people in general didn’t like to talk about death and were very private about particular matters. (Author) [ 20 ]

Some cultures believed that the spirit transferred from the donor to the recipient and others discussed the need for ancestral approval before donation, so that the remaining family did not lose ancestral protection in the future. Others highlighted the importance of particular rituals to do with the grieving process and that organ donation was seen to interfere in this process [ 26 ]. Some spoke about the change in traditional cultural beliefs over time and how younger generations were deciding to become donors.

Family influence

I personally have no objection but my father does, so I am not sure … . (Respondent, Female, 20) [ 15 ]

Some felt they had to ask permission from family members. Some also felt that a definite decision, from family members regarding donation, would ensure that loved ones were not burdened later with a difficult choice. Some felt that organ donation would interfere with the grieving process for families.

Body integrity

To be honest with you I do care what happens to my body after I die, I may be dead but it’s still my body and I want it to look right and be treated right. (Respondent, Female) [ 30 ] I'd sign, but my wife and children object. The children don't like to see daddy cut up. (Respondent, Male) [ 18 ]
I would not donate my eyes, ever, because of the ceremony prior to cremation when people come to the funeral to see the body. I don’t want to not have any eyes. (Respondent) [ 31 ]

Interaction with the health care system

How fast is the decision made? Are you really dead? Who makes the decision? (Respondent) [ 18 ] . . . They’ll start gutting you up like a deer. (Respondent) [ 29 ]
Sorry to say, but we all think it’s for the whites and not us because whenever we see pictures on TV about people receiving transplants they are always white. So we think we are not part of a culture who needs donors or organs. (Respondent, Female aged 18–30 years, African) [ 19 ]

Level of knowledge and information on organ donation

A number of people expressed concern about the lack of information available concerning organ donation. Over time, ‘urban myths had been translated into what people perceived to be correct information and had subsequently resulted in fears about donation. (Author) [ 19 ]

One study, though, indicated that participants would still choose not to donate even if they had more information about the process, as their belief system did not support donation [ 18 ].

Participants’ reservations despite positive beliefs

Overwhelmingly … people cited the amazing potential of organ donation to help people who are suffering … However, these same people went on to voice serious misgivings about organ donation, especially about institutions and individuals involved with the process of organ donation. (Author) [ 29 ]

Balance of attitudes to organ donation.

Balance of attitudes to organ donation.

We identified eight major themes regarding community attitudes towards organ donation. Many made decisions regarding organ donation based on personal beliefs (religious, cultural, family, social and body integrity), levels of knowledge about organ donation and previous interaction with the health care system. Many maintained positive attitudes to organ donation despite significant reservations about the organ donation process. Resistance to donation tended to be less in the case of living donation for family.

There are some limitations in this study. Although we set out to synthesize community attitudes to organ donation, 13 of the 18 included papers were specifically designed to elicit barriers to organ donation from ethnic or cultural groups with previously known low donation rates. Consequently, the results of this review are perhaps skewed towards the negative influences on the organ donation process.

Previous research tells us that religious beliefs are often associated with being a non-donor [ 3 , 5 , 6 , 12 , 13 ]. In this study, we find that some religious beliefs could also be positive influences and where negative beliefs were present, these often stemmed from uncertainty or misrepresentation of religious edicts. One solution would be for the transplant community to more actively engage religious leaders, especially when it has been reported that, across the major religions, there are very few cases where organ donation can be seen to be inconsistent with religious edicts [ 35 ]. Religious leaders could be made available in hospitals to assist families in making decisions regarding organ donation and potentially debunk misperceptions. Staff members who have a role in approaching families to request consent for donation could also be more effective through awareness programmes and resources about religious concerns.

Similarly, cultural sensitivity to issues such as apprehensiveness to discuss death among certain groups or individuals and the importance to many of death rituals may improve dialogue regarding organ donation. Studies have shown that engaging some minority groups in the health care system and creating a sense of belonging and ownership can improve compliance with health interventions [ 36 ]. As a consequence, efforts should be made to create positive interactions within the health care system, especially for minority groups, to improve donation rates.

Although many qualitative studies have found that higher socio-economic status and education were associated with a stronger willingness to be an organ donor [ 2 , 3 , 5 ], little can be discerned directly from these studies as to the reasons why. However, issues of alienation, as highlighted in relation to ethnic minorities, and of ignorance are likely to be at play. This suggests that programmes to better engage disadvantaged communities particularly through targeted information campaigns would be worth considering. Some of the strong reservations held, even among those with generally positive views towards donation, such as concerns that agreeing to donation would discourage doctors from caring so much about saving their lives in an emergency or that it would result in the premature removal of their organs or indeed prevent them from having an open coffin at their funerals, are examples of very real barriers that can be readily addressed through information.

The organ donation decision is a complex one, based strongly on personal beliefs. There are some factors, such as religious and cultural beliefs, that are seemingly intractable and are often cited as reasons for a refusal to donate. In this review of qualitative studies, it is shown that these have often been found to be tied in with more complex issues such as a distrust of the medical system, misunderstandings about religious stances and ignorance about the donation process. Interventions to better engage the community, including disadvantaged and minority groups, to foster trust and provide information represent promising opportunities of promoting organ donation in the future.

Supplementary Appendix is available online at http://ndt.oxfordjournals.org .

This work was funded by Australian Research Council Discovery Project Grant (DP0985187).

Conflict of interest statement . None declared.

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research about organ donation

Opportunities for Organ Donor Intervention Research

Organ donation has the power to save lives and improve health outcomes, but the growing number of patients awaiting organ transplantation far exceeds the number of organs available.

A report from the National Academies of Sciences, Engineering, and Medicine offers recommendations to improve organ donor intervention research , a new area of study aimed at increasing the number and enhancing the quality of organs available for transplantation.

Scroll down to learn about the time-critical steps involved in organ donation and transplantation and how organ donor intervention research helps maximize the gifts of donated organs.

Scroll Down

Learn about the time-critical steps involved in organ donation and transplantation and how organ donor intervention research helps maximize the gifts of donated organs.

Organ Donation Authorization

Authorizing organ donation can happen at any point during a person’s lifetime, or through family or a surrogate after death. Often, a person specifies his or her preference when obtaining or renewing a driver’s license at a state department of motor vehicles (DMV). Designations can also be made through state- or national-level organ donor registries.

Each donor has the potential to donate up to eight organs, which can be transplanted into eight or potentially even more recipients. Donors may specify how their organs will be used, including transplantation, research, or both.

While the number of donated organs has increased, current demand far outpaces supply.

research about organ donation

About the Organ Donor Registries

  • In the United States, the most common occasion for a person to specify his or her preference to be an organ donor is at the time of obtaining or renewing a driver’s license.
  • There are 53 donor registries through DMV agencies in each of the 50 U.S. states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.
  • Donate Life America also operates a donor registry at the national level.

research about organ donation

Identifying and Listing Transplant Candidates

Because the demand for donor organs exceeds the supply , those who have been identified by their health care team as needing an organ transplant must be placed on a waiting list for the type(s) of organ they need.

In that process, health care professionals provide information on a range of factors (e.g., age of the donor, health factors) that will need to be considered in making transplant decisions. This would be the time that a potential recipient and the health care team would discuss organ donor intervention research and whether to be considered for a research organ.

research about organ donation

The Organ Transplantation Gap

While the number of organs transplanted has increased in recent decades, the growth in patients awaiting an organ transplant has far outpaced the number of organs being transplanted.

research about organ donation

The Network of Services for Organ Donation and Transplantation

After determining death and verifying that organ donation has been authorized, efforts are made across the network of organ donation and transplantation organizations to preserve and recover the organs and to match them to the appropriate recipients.

These efforts are accomplished by a robust interdependent network of multidisciplinary, multi-institutional services that includes organ procurement organizations (OPOs), donor hospitals, transplantation programs and centers, and histocompatibility laboratories.

research about organ donation

Donation Service Areas Are Geographically and Culturally Diverse

Across the United States, the Organ Procurement and Transplantation Network operates in units referred to as donation services areas (DSAs); each of which encompasses organ procurement organizations (OPOs), donor hospitals, transplantation programs and centers, and histocompatibility laboratories. An extensive national computerized network is used to match donated organs with potential recipients.

research about organ donation

Donor Management

After an organ donor dies and authorization to donate is verified, the organ procurement organization and donor hospital implement donor management protocols. These procedures aim to maintain organs in the best possible condition by minimizing organ stress, damage, and dysfunction until the organs are recovered.

Such protocols include administering medicines, maintaining the deceased donor’s body at a particular temperature, and various other steps.

Organ Matching and Transplant Decision

When an organ becomes available and a potential recipient is identified through the waiting list matching process, the transplant team contacts the potential recipient with details about the organ, such as the age and health of the donor.

If the organ is part of a research study and the transplant candidate is willing to consider receiving a research organ, details about the research study would be provided so that the candidates can factor this information into their decision about whether to go forward with the transplantation.

To maintain the organ in optimal condition, the decision of whether to accept an organ needs to be made quickly—usually within 1 hour of receiving the offer and accessing the deceased donor’s information.

research about organ donation

Preservation Time Varies By Type of Organ

research about organ donation

Organ Donor Intervention Research

Organ donor intervention research tests and assesses medicines, devices, and donor management protocols with the goal of improving the quality of organs to be transplanted. This work can be done either before or after the organ is recovered from the donor but prior to transplantation.

Every year, some organs that are recovered for use in transplantation are later determined to be unsuitable for this purpose. This is often due to poor organ function, vascular damage, or organ trauma. Organ donor intervention research presents an opportunity to discover ways to improve organ quality and viability, increasing the number of organs suitable for transplantation.

research about organ donation

Donor Intervention Research Helps Maximize Successful Transplants

The intent of organ donor intervention research is to identify interventions that can improve the quality and viability of transplantable organs. The research occurs during donor management and before a transplant. Information about the research in general would be provided to transplant candidates during their time on the waiting list, with details about the specific research study provided at the time the organ is offered to the candidate.

research about organ donation

Transplantation and Post-Transplant Follow-Up

If the transplant team determines that the organ is acceptable, and the potential recipient confirms he or she will accept the organ, the transplant moves forward. Transplantation is followed by a period of extensive follow-up care.

Despite scientific advances over the past several decades, some organs still may not be recovered, some recovered organs may not be transplanted, and some transplanted organs may not function adequately. There simply are not enough viable donated organs to meet existing demand.

Deceased organ donor intervention research has the potential to help address this growing need, honoring the gift of donated organs by fully using those organs to save and improve the quality of the lives of their recipients.

research about organ donation

The National Academies of Sciences, Engineering, and Medicine has developed a set of goals and recommendations to guide work on organ donor intervention research that can help enhance the quality and increase the quantity of organs that can be recovered from donors and transplanted.

Steps can be taken by a variety of stakeholders to:

  • Communicate about this research to the general public
  • Coordinate donor registries across state DMVS and other registries
  • Clarify state laws
  • Inform potential transplant recipients about their options regarding research organs
  • Establish centralized management and oversight of organ donor intervention research
  • Develop tools to track research outcomes

research about organ donation

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  • Published: 05 May 2021

Organ donation and transplantation: a multi-stakeholder call to action

  • Raymond Vanholder   ORCID: orcid.org/0000-0003-2633-1636 1 , 2 ,
  • Beatriz Domínguez-Gil 3 ,
  • Mirela Busic 4 ,
  • Helena Cortez-Pinto 5 , 6 , 7 ,
  • Jonathan C. Craig 8 ,
  • Kitty J. Jager 9 ,
  • Beatriz Mahillo 3 ,
  • Vianda S. Stel 9 ,
  • Maria O. Valentin   ORCID: orcid.org/0000-0003-4381-1332 3 ,
  • Carmine Zoccali 10 , 11 &
  • Gabriel C. Oniscu   ORCID: orcid.org/0000-0003-1714-920X 12 , 13  

Nature Reviews Nephrology volume  17 ,  pages 554–568 ( 2021 ) Cite this article

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  • Renal replacement therapy
  • Social sciences

Although overall donation and transplantation activity is higher in Europe than on other continents, differences between European countries in almost every aspect of transplantation activity (for example, in the number of transplantations, the number of people with a functioning graft, in rates of living versus deceased donation, and in the use of expanded criteria donors) suggest that there is ample room for improvement. Herein we review the policy and clinical measures that should be considered to increase access to transplantation and improve post-transplantation outcomes. This Roadmap, generated by a group of major European stakeholders collaborating within a Thematic Network, presents an outline of the challenges to increasing transplantation rates and proposes 12 key areas along with specific measures that should be considered to promote transplantation. This framework can be adopted by countries and institutions that are interested in advancing transplantation, both within and outside the European Union. Within this framework, a priority ranking of initiatives is suggested that could serve as the basis for a new European Union Action Plan on Organ Donation and Transplantation.

Differences in the frequency of transplantation between countries in the European Union suggest that there is room for improvement, wherein countries with low transplantation rates could learn from the experience of countries that are doing well.

Efforts to increase transplantation rates require a variety of strategies, including approaches to increasing living and deceased donation, improving coordination of the donation and intensive care unit processes, increasing graft quality and optimizing expanded donation criteria.

Education should cover the complete spectrum of society (the general population, patients and medical professionals) with specific outreach methods to under-represented communities and individuals who are health illiterate.

Infrastructural and financial barriers to transplantation should be banned.

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Introduction.

Organ transplantation improves patient survival and quality of life and has a major beneficial impact on public health and the socio-economic burden of organ failure. In the European Union (EU), a relatively coherent and structured approach to transplantation exists, with well-developed national programmes, international schemes to facilitate organ sharing and well-defined exchange policies 1 , making Europe a leader in the field. Between 2009 and 2015, the EU operated a successful Action Plan to promote organ donation and transplantation 2 . However, transplantation rates today differ markedly between EU countries, suggesting that there remains room for improvement. To address the differences, the European Commission convened a Thematic Network coordinated by the European Kidney Health Alliance ( EKHA ), tasked with providing guidance to increase organ donation and transplantation and presenting key action points that would increase the prevalence of patients living with a functioning transplant throughout Europe. This thematic network culminated in the publication of a joint statement that recommends strategies to promote transplantation and donation in the EU and, by extension, throughout Europe 3 . Although the focus of this statement is on adult and paediatric transplantation of solid organs, many recommendations are also applicable to tissue transplantation (for example, cornea).

This Roadmap summarizes and builds on the Joint Statement and the experience gained from implementation of the earlier Action Plan to recommend strategies through which transplantation activities and the number of individuals living with a functioning transplant in Europe can be enhanced. We outline the challenges posed by the development and implementation of a EU-wide transplantation strategy and propose 12 key areas in which specific measures should be considered to promote transplantation, providing an overall framework that can be adopted by countries and institutions to improve rates of donation and transplantation (Fig.  1 ). These areas were selected and defined by a group of experts, including members of professional organizations, and authorities from national health-care bodies. As the Joint Statement is a product of a European Commission initiative, most of the recommendations herein are aimed at improving the current status of transplantation within the EU, but importantly these recommendations are also relevant to the 17 EU-associated countries and to regions elsewhere in the world, with some adaptations to local conditions if required.

figure 1

These topics have been ranked in order of priority; however, this ranking should be considered with caution as it represents a subjective judgement by the authors of this Roadmap, possibly biased by confounding factors such as region of residence, precise involvement and responsibility in transplantation activity, personal opinion and extent of solid evidence base. Furthermore, given the variations discussed in the Roadmap, the ranking of these topics may vary between different countries or stakeholders. In addition, the topics are highly interdependent (as illustrated by colour coding) and cannot be considered in isolation. Research is linked to all topics.

Current status of transplantation in Europe

Non-communicable (chronic) diseases (NCDs) impose a substantial burden on health-care systems, economies, quality of life, employment status and social activities. In Europe, NCDs are responsible for 77% of the disease burden and 86% of deaths 4 , many of which are in young individuals 5 . Changes in population demographics and the growing prevalence of risk factors have contributed to an increase in the demand for organ replacement therapies. Artificial organ support is an option in some instances, but is only available on a large scale for kidney failure in the form of dialysis. Hence, transplantation is for many patients the only solution to restoring organ function and preventing premature death. The WHO has urged countries to progress towards self-sufficiency in transplantation, first by preventing NCDs and their progression to end-stage organ failure, but also through the provision of sufficient numbers of life-saving transplants to match their need 6 , 7 . The WHO further emphasizes that deceased donation should be developed to its maximum therapeutic potential.

More than 34,285 solid organ transplantations were performed in the EU in 2019, 85% of which were kidney (21,235) and liver (7,900) transplants. Cardiothoracic transplantation represented 13% of activity with 2,269 hearts and 2,136 lungs transplanted, whereas pancreas (2%), small bowel and multi-visceral transplants represented only a small fraction (Table  1 ; Fig.  2 ). Although the total number of annual transplantations rose by 4,540 between 2010 and 2017, the number of annual transplantations from 2017 to 2019 increased by only 161, indicative of a stagnation in transplantation activity, possibly related to the end of the EU Action Plan in 2015 (Fig.  2 ).

figure 2

As Croatia was not part of the EU in 2010–2011, the data for transplantations performed in Croatia were added to the data for the 27 EU member states for those years. The absolute total number of transplantations for each year is provided. The corresponding number per million population increased from 59 (2010) to 67 (2019). The EU Action Plan on Organ Donation and Transplantation was operational between 2009 and 2015. The marked rise in yearly transplantation rate observed particularly in the last years of the EU Action Plan on Organ Donation and Transplantation (2012–2015) seems to have levelled off in the years 2016–2019. Data were calculated based on data from the Transplant Newsletter 135 .

Transplantation of organs from deceased donors remains the most prevalent form of transplantation throughout the EU. Although deceased donor transplantation occurs most frequently from donors declared dead by neurological criteria (donation after brain death; DBD), donation after death declared by circulatory criteria (donation after circulatory death; DCD) contributes to transplant activity in a number of countries 8 (Table  2 ; Fig.  3 ). However, substantial variability exists in the use of DCD transplantation between EU member states. DCD is not permitted in a number of European countries because of legislative and ethical obstacles 9 , 10 , and practiced in only a few cases in many other countries 8 . In 2019, 28 of 35 European countries had an active DCD programme compared with just 10 in 2011 (ref. 10 ), but in several of these countries the DCD activity was marginal (Fig.  3 ). In 2019, DCD contributed to 17.8% of deceased donation transplantations in the EU. Living donation (almost exclusively kidney and liver), which is particularly beneficial to paediatric recipients, represents a considerable proportion of transplant activity in some but not all European countries 8 (Tables  1 , 2 ; Figs  3 , 4 ).

figure 3

Substantial differences exist between EU countries in terms of their overall rates of donation but also in terms of the specific types of donation. Only 11 of the 28 countries (39%) use notable quantities of organs donated after cardiac death. Although all EU countries perform transplantation after living donation, substantial differences in the rates of living donor transplantation exist between countries. Data were calculated based on data from the Transplant Newsletter 135 .

figure 4

Of 28 countries, 12 (43%) showed an increase in transplantation activity of >20% (asterisks). Although most countries tended to increase or stagnate their rates of transplantation, a few show a decrease. Also shown are the absolute numbers of transplants (from deceased plus living donors) in 2019. Data were calculated based on data from the Transplant Newsletter 135 .

The number of organ transplant procedures for the EU as a whole was 67.2 per million population in 2019, with marked differences between countries 8 , 11 (Fig.  3 ), reflecting differences in local health-care processes, efforts to develop living and deceased organ donation, available infrastructure and expertise, and economic factors 12 . Most EU member states have seen an upward trend in transplantation rates over the past decade, but some countries have seen a substantial decrease (Fig.  4 ). These decreases are in some cases influenced by external factors, such as public mistrust 13 , and have negative consequences on patient outcomes 8 , 11 .

For most vital organs (liver, heart, lungs), transplantation is the only life-saving therapy. For patients with kidney failure (also known as end-stage kidney disease), which is rapidly rising in the ranked order of fatal diseases 14 , kidney transplantation offers not only a better survival and quality of life than dialysis 15 , 16 , 17 , but can be life-saving when vascular access options are lost. Yet, by the end of 2019, more than 58,000 patients were waiting for an organ transplant in the EU (Fig.  5 ). Yearly, 3–4% of those on the waiting list die before being transplanted, representing 10–11 patient deaths daily 8 . This figure is probably an underestimate, owing to incomplete data reporting in some countries. The mismatch between the need for transplants and donor supply, which excludes patients from lifesaving treatment, is exacerbated by the rising prevalence of health problems, such as diabetes mellitus and obesity, which reduces the donor pool; the presence of major public health challenges, such as the current COVID-19 pandemic; and improvements in critical care processes or car safety, which prevent deaths but also reduce the pool of deceased organ donors. The problems associated with access to donor organs are further illustrated by the small proportion of patients who receive a pre-emptive kidney transplant, which in most countries represents <10% of patients starting kidney replacement therapy 18 , necessitating a variable period on dialysis with a negative impact on survival and high associated costs 19 .

figure 5

The percentage of deaths (red line) is calculated as the ratio of those who died that year while waitlisted to the total number active on the waiting list that year multiplied by 100. There was a 7% increase in the number waitlisted over this 5-year period. The percentage of deaths remained relatively stable between 3–4%. Data were calculated based on data from the Transplant Newsletter 135 .

Of note, NCDs also present a considerable health economic burden through a life-long need for consultations, medication, surgery, imaging, interventions and hospitalization. It is difficult to quantify the economic impact of organ transplantation in the absence of large-scale artificial organ treatment as an alternative option. However, for kidney failure, for which dialysis consumes at least 2% of health expenditure for only 0.1–0.2 % of the general population 1 , transplantation is by far the most cost-effective kidney replacement option, particularly from the second year post-transplantation 20 , 21 . Economic evaluations for other solid organ transplants are less straightforward. Costs associated with liver transplantation can be substantial, particularly in the context of biliary complications that can increase the duration of hospitalization and the need for diagnostic studies and further therapeutics 22 . Nevertheless, liver transplantation has been reported to be cost effective 23 in comparison with the rapidly rising costs of non-transplanted liver disease (including costs of medication, radiological procedures, and repeated and prolonged hospital admissions) 24 . Heart failure is a leading cause of morbidity and mortality worldwide and places a huge burden on health-care systems; available data suggest that heart transplantation is also cost-effective in eligible adult and paediatric recipients 25 , 26 .

Unemployment among patients with chronic NCDs generates pressure not only on social security but also on productivity and buying power 27 . Transplantation can interrupt this vicious circle, although pro-active mechanisms are needed to promote socio-economic (re)integration of individuals following transplantation, as 40–80% of transplanted patients remain unemployed or permanently disabled 28 , 29 , 30 .

Finally, patients with NCDs also experience a heavy burden of polypharmacy, diet restrictions, comorbidities, and time spent in hospital and travelling to medical appointments. Transplantation restores not only organ function but also quality of life 20 , 31 . For children, transplantation also leads to improvement in development, growth, education and mental health in the recipient and in quality of life for the carer 32 .

The benefits of transplantation prompted the EU to launch the Action Plan on Organ Donation and Transplantation, which aimed to increase organ availability, enhance efficiency and accessibility of transplant procedures, and improve the quality and safety of organs intended for transplantation. It was implemented from 2009 to 2015 (refs 2 , 33 ). At the end of 2019, a 16% overall increase in transplantation rate was observed compared with 2010 8 (Table  1 and Fig.  2 ). This increase varied for different types of transplants (for example, 42% increase for lung transplantation, 17% for liver and 15% for kidney transplantation) and was primarily a result of a substantial increase in DCD 8 , suggesting that DBD and living donation may also benefit from further stimulatory interventions. Moreover, the initial rise in transplantation rate observed after 2012 seems to have somewhat levelled off in the past few years (Fig.  2 ), suggesting that the effect of the EU Action Plan has lost some momentum and that a new plan may be needed.

Data specific to kidney transplantation show that implementation of the Action Plan was associated with a rise in the total number of kidney transplantations and in the percentage of patients living with a functioning kidney graft in the EU (Supplementary Table 1 ). However, marked differences between countries are evident, underscoring the need for further action to boost transplantation rates in some regions.

Topics for action

Variations in transplantation practices and policies between European countries have led to differences in access to transplantation; in some instances, patients who may benefit from transplantation are not considered eligible (for example, owing to age or the presence of comorbidities or mental health issues) 34 . The optimal approach to increasing transplantation rates is to set well defined, ambitious goals, such as an aggregated increase in the number of EU transplantations by 10% in 10 years, complemented by specific development plans that detail the elements required to support individual countries or groups of countries according to the local conditions. This strategy should be followed by an implementation plan at a national level with internal and external auditing. Several organizations, such as the Council of Europe, have previously formulated recommendations and resolutions to increase transplantation at the institutional level (summarized in Supplementary Table 2 ). This Roadmap is complementary to those efforts and extends these initiatives by outlining a comprehensive multinational policy approach 33 , 35 , 36 . Barriers to transplantation 37 , 38 , which are often psychological and practical in nature, may be avoided through appropriate education and regulation 2 (Box  1 ).

Lessons can also be learned from countries that are performing well. For example, measures taken by Spain to increase rates of deceased organ donation 39 , 40 , 41 over recent decades have had remarkable success 8 (Supplementary Figure 1 ). These measures have included a strong emphasis on coordinating the donor process, use of a pyramidal structure to coordinate processes from local to regional and national offices, engagement of the critical care community, benchmarking, provision of guidance and continuous professional training, and the increased use of living donation, expanded donor criteria and DCD organs 39 , 40 , 41 . Regions such as Croatia, Northern Italy, the UK and France, which adapted the Spanish model to their local circumstances, also saw an increase in transplantation rates 42 , enabling these regions to focus on equality of access and approaches to optimizing outcomes and education. Other countries, such as the Netherlands, have also increased their transplantation rates substantially, largely through increasing rates of living donation (Supplementary Table 1 ).

Herein we summarize 12 key domains that informed the Joint Statement commissioned by the European Commission 3 and in which action could enable further increases in the number of donations, transplantations and patients living with a functioning transplant. These topics form the basis of a Roadmap that is intended for use by the EU, EU health-care authorities, patient associations and professional societies to guide the implementation of measures to stimulate organ donation and transplantation. Beyond increasing rates of organ donation and transplantation, the involved communities should do their utmost to maximize the longevity of transplanted organs, which is an absolute priority for the recipients 43 , 44 . To guide implementation of strategies that address each of these areas, we have ranked the 12 key topics in order of importance (Fig.  1 ). Of note, however: this ranking should be considered with caution given that it is largely opinion based, given the variation in the extent to which each of these areas may need to be addressed differently in different countries, and the interdependent nature of the areas, such that they can only be considered and implemented together. The highly integrated nature of these areas renders it near impossible to disaggregate and quantify the potential impact of individual interventions within a topic. However, all examples provided within this Roadmap refer to countries with a high transplantation rate (>60 per million population per year).

Box 1 Non-medical barriers to transplantation

Barriers at the patient level

Attitude, role perception, motivation

Distrust of health-care professionals

Lack of knowledge

Fears and concerns

Fear of rejection or graft failure

Fear of surgery

Fear of medication or adverse effects

Previous negative experiences (self or others)

Fear for the living donor’s health

Sociocultural background

Religious reasons that oppose transplantation

Unsuitable living circumstances

Shortcomings in patient efforts or investments

Reluctance to ask potential living donors

Lack of social support

Lack of adherence or hygiene

Barriers at the level of the health-care professional

Lack of knowledge and expertise

Difficulty in selecting patients

Lack of communication skills

Barriers at the level of the health-care system

Financial barriers

Lack of support staff

Competition with other treatment modalities

Patient doing well on other treatment modalities

Adapted with permission from refs 2 , 136 , the European Kidney Health Alliance.

Increasing donation

Increasing the number and quality of donated organs is a key element in increasing donation rates. Several strategies exist to facilitate this donation process.

Maximizing the role of donor coordinators

Proper coordination of the donation process is a key element in increasing donations and optimizing outcomes. The European models that have been most successful centre around the involvement of efficient donor coordinators, who are independent of the transplantation team, and are based in each hospital that has potential for deceased donation. These coordinators have key roles in the steps leading to the traditional model of deceased donation — a process that involves potential donor selection, maintenance of the haemodynamic status of the donor and organ perfusion, diagnosis of death and communication with the family. These individuals are trained in recognizing donation opportunities in end-of-life care pathways and in providing grieving families with the psychological support required to make the often difficult decision to agree to donation. Critical to the overall success of these programmes has been the appointment of professionals who develop a proactive programme for the identification of possible donors, in close cooperation with the critical care community. Donor coordinators should receive continuous training, with special attention given to the skills required to communicate with grieving relatives and organize organ handling with minimal delay. Local networks should be supported by national and regional cells that focus more on policy and technical aspects 39 . Regular internal and external audits should be used to identify areas for improvement 39 .

Optimizing the role of intensive care professionals

Engagement with intensive care professionals is particularly important to ensure that deceased donation is always considered as an option for patients receiving end-of-life care, provided that it is appropriate and consistent with the potential donor’s wishes and values 45 , 46 . Optimizing the role of intensive care professionals in the donation process requires a number of steps, including the identification of intensivists who will champion donation in their unit and in their hospital or region as a whole as well as lead education efforts; training of all intensive care staff in approaches to identifying possible organ donors on the basis of simple triggers (that is, the identification of individuals who have died or are likely to die imminently in a condition compatible with organ donation); maintenance of organ viability until donation; ensuring timely referral to donor coordinators; and ensuring an appropriate and consistent approach to the families of potential donors 46 .

Minimizing the duration of the donation process

The time between consideration of donation opportunities and initiation of the actual donation procedure can vary considerably and can exceed 24 h sometimes substantially 47 . Hesitation in donor identification and donor handling by medical staff as well as indecision of families owing to socio-cultural, religious or educational barriers 48 all affect the duration of the donation process, as do organizational factors such as the length of the process before an organ is offered to a potential recipient, the need for additional tests and lack of timely access to surgical theatres. These delays may have adverse effects on donation by increasing the risk of donor organ deterioration or withdrawal of family consent, leading to the loss of otherwise transplantable organs. Therefore, national programmes should focus on approaches to facilitating the identification of all possible donors, the early notification of donor coordinators and work with families to reduce the rate of donation refusal 49 , thus avoiding donor loss.

Optimizing living donation

Transplantation of a kidney from a living donor offers markedly better chances for graft and patient survival than transplantation of a kidney from a deceased donor 50 , whereas living donor liver transplantation involves a similar hospital stay and survival rates to deceased donor transplantation 51 . Although practiced in almost every EU country, living donation has a variable contribution to overall transplantation activity. It is markedly low in many countries, even in those with well-established transplantation programmes, with the Netherlands and Iceland as notable exceptions (Figs  3 , 4 , Supplementary Table 1 ). Living donation remains the method of choice for infants and children, in particular for those with kidney failure, because it enables pre-emptive transplantation and avoids the need for dialysis. In the Netherlands, kidney transplantation is largely driven by living donation, making it a country with one of the highest proportion of patients on kidney replacement therapy living with a functioning transplant in the EU (Supplementary Table 1 ).

Donor safety remains paramount and should be the primary focus of any living donation programme. However, it is equally important to demystify the risks of living donation, through a uniform process of information (for both the donor and recipient) and evaluation (via an online approach if convenient) to ensure that all essential information is conveyed and understood 52 (see below and Supplementary Box 1 ). This approach will encourage expansion of living donation programmes, increasing access to transplants for patients from ethnic minorities and economically challenged backgrounds who are often disadvantaged overall in transplantation programmes (see below). Living kidney donors may have a low but increased risk of developing hypertension 53 or kidney failure 54 , and therefore robust living donor programmes should carefully select donors, include an adequate follow-up, and if needed, preventive treatment. Moreover, and in contrast to the experience of many organ donors 55 , the donation process should be financially neutral. Processes therefore need to be in place to ensure that living donors do not face out-of-pocket costs and lost wages, or difficulty securing health or life insurance 56 .

Approaches to broadening donor and recipient criteria, including the involvement of emotionally related and unrelated altruistic donors and organ-sharing schemes , enable the expansion of living donation programmes. Although sharing schemes exist in a number of EU countries such as in the Netherlands and Spain, they remain non-existent or very limited in others 8 , 57 , 58 . Of note, a number of European and cross-border organ-sharing initiatives have been implemented to redress this situation 59 , 60 .

The implementation of initiatives to encourage living donation raises organizational and ethical questions, which have been addressed in a reference toolkit developed by the European Commission and National Agencies 61 . Any common ethical framework for unrelated living donation should be regulated at an EU level to alleviate any concern that pressure may be exerted on the candidate donor to benefit an irreversibly sick person and alleviate the associated societal costs 62 .

Use of expanded donor criteria

The term ‘expanded criteria donor’ is commonly applied to donors whose clinical–demographic characteristics would have an impact on the quality of the organ and its expected longevity. The traditional definition of an expanded criteria kidney donor includes age >60 years or age >50 years with at least two of the following: a history of hypertension, serum creatinine level >1.5 mg/dl (132.6 µmol/l) or death from cerebrovascular accident 63 . However, this dichotomous definition has increasingly been replaced by risk scores to guide the categorization and use of all organs (liver, kidney, pancreas) 64 , 65 , 66 . The increased use of expanded criteria donor organs and the changing profile of the potential donor pool has led to the increased use of organs from donors with a high comorbidity burden (for example, donors with diabetes mellitus). For patients with kidney failure, these organs can improve survival compared with remaining on dialysis 67 . Dual kidney transplantation (whereby both kidneys from a donor are transplanted into a recipient) can also allow the use of organs from marginal (for example, older) donors 68 .

DCD organs have in the past been considered to yield inferior post-transplant results compared with those achieved with DBD donor organs. However, increased experience has led to the attainment of appropriate post-transplantation outcomes with DCD organs 69 , 70 . Efforts can be required to overcome the legal and ethical barriers to DCD transplantation, such as the absence of a legal framework regulating the cessation of therapy, and to increase the confidence of transplantation professionals in the outcomes obtained with the use of DCD organs. Advances in organ perfusion protocols may be required to better preserve DCD organ quality and prevent the unnecessary discarding of suitable organs 71 , 72 , 73 ; however, the role of in situ and ex situ preservation strategies and the type of organs that require these interventions require further study 73 .

Non-standard risk donors are defined as those with specific conditions or diseases (for example, infections or malignancies) that can potentially affect the safety of the transplant recipient. Transplantation of these organs can be appropriate provided that an individualized risk-assessment is performed and that recipients are properly selected 74 . Examples of this scenario include the use of organs with unusual anatomy but appropriate functionality (Supplementary Box 2 ), transplantation of HIV-infected grafts into recipients with HIV 75 , or transplantation of hepatitis C virus (HCV)-infected grafts into HCV-negative recipients — a process that is now possible with the use of direct-acting antiviral agents 73 , 76 . For heart transplantation alone, full use of all available organs from HCV-positive donors would increase the transplantation rate by about 3% 77 . Thus, the combined use of all available donor expansion measures could increase transplantation rates substantially.

EU countries that provide a legal framework for euthanasia are the Netherlands, Luxembourg, Belgium and as of June 2021, Spain. Organ donation after euthanasia in those countries is medically possible and thus represents a further option to provide these patients with the opportunity of organ donation and to expand the donor pool 78 , 79 .

Despite satisfactory outcomes 10 , 69 , 70 , many expanded and non-standard criteria donor organs remain underused in European countries 8 , 10 , 80 , 81 . An analysis from the USA demonstrated that the transplanted counterparts of >15% of unilaterally discarded donor kidneys showed a death-censored 5-year survival >85% 82 . Thus, discarded organs have the potential to contribute substantially to the donor organ pool and their use should be supported through the provision of information to health professionals about the benefit of using them and to the potential recipient, highlighting the benefits and risks of alternative choices. The rate of organ discard in Europe might be reduced by the application of risk score systems to guide the identification of suitable organs and appropriate recipients 83 .

Several countries have implemented educational tools to promote organ donation and transplantation (Supplementary Box 1 ). A more harmonized approach across the EU could result in further structural improvements.

Improving communication skills of health-care professionals

Communication training should in particular focus on professionals involved in the early stages of the deceased donation process — such as emergency and intensive care physicians and donor coordinators 45 , 84 . Communication training should cover both sides of the donation and transplantation process; donor coordinators and professionals in intensive care should be trained in approaches to communicating with the families of possible donors, whereas transplantation professionals should be trained in approaches to communicating with potential recipients in an informative and efficient way. Information on the benefits and practical aspects of transplantation should be embedded in the curricula of all health practitioners, from medical students to postgraduate teaching of specialists and general practitioners (Supplementary Box 1 ). Specific involvement of health-care professionals trained in patient education as part of the treating team is extremely helpful.

Education of the public

Insufficient public awareness of organ donation and transplantation 85 , 86 , including the concept of brain death 87 , necessitates continuous education. A highly efficient strategy involves use of mass and social media, and requires the building of active partnerships with journalists 41 . Education activities in schools and use of flyers or web-based tools may help to increase awareness. In Croatia, information pamphlets with answers to frequently asked questions are made available to the public, whereas in Finland, an online educational tool is provided to educate patients and the general public about kidney transplantation (Supplementary Box 1 ). The EKHA “Gift of life” campaign 88 offers advice to policy makers and citizens on approaches to promoting organ donation. This campaign stresses the need for a coordinated European approach based on appropriate legal and structural frameworks to allow individuals and professional nephrology and patient societies to promote kidney transplantation at the national policy level in an equitable way throughout Europe with respect to the local cultural background 88 . Such initiatives that focus on organ donation as a whole would further public education about the benefits and processes of transplantation.

Additional barriers that exist in economically or socially disadvantaged groups, including those with a low level of educational attainment, refugees, migrants and under-represented communities, should be specifically addressed with the help of patients, patient organizations, and minority communities, to understand attitudes and develop strategies and ensure equitable access to transplantation (see later) 39 . This aspect is particularly important as patients from these groups are generally over-represented on the transplant waiting list and under-represented in the donor population. Limited willingness to donate exacerbates the challenge of finding suitable HLA matches for kidney transplant candidates, prolonging the wait-list time, increasing the risk of mismatch, and jeopardizing long-term outcomes 89 .

Patient education and information

Limited health literacy (discussed below) and patient disinformation also deter transplantation 90 . The information provided by physicians and nurses to candidate organ recipients should discuss all treatment options, especially for kidney transplant candidates, for whom dialysis is a readily available but in many cases a less desirable alternative. Information about deceased and living donation 2 should be provided, as often no information is offered about the two options (Supplementary Table 3 ). Education about organ replacement options should be provided as patients approach organ failure and be delivered in a tailored way either in hospital, in outpatient clinics or at home (Supplementary Box 1 ). Patient records should include an explicit statement on the suitability of the patient for transplantation, including the views of the patient and, particularly in the case of living donation, the views of their next of kin. To improve long-term patient outcomes 91 , 92 , education should include lifestyle advice, particularly approaches to addressing excess weight, smoking, excessive alcohol intake and hypertension and to promoting a healthy diet and exercise.

In 2017, EKHA distributed a questionnaire to determine the satisfaction level of patients from six EU countries with the information that had been provided to them about the different types of kidney replacement therapy in the period preceding the start of those therapies 2 (Supplementary Table 3 ). Patient dissatisfaction with the quality of information provided about transplantation ranged from 11% (the Netherlands) to 45% (Greece). These data confirmed findings from a previous analysis 93 of data collected from 2010 to 2011, suggesting little change since then, and underscoring the need for streamlined European education for all transplant candidates. A centralized quality check on information delivery and patient satisfaction might encourage excellence. Not surprisingly, dissatisfaction about the information provided coincides with low application of a given practice, suggesting a self-fulfilling circle (for example, in the Netherlands, which has a high transplantation rate, patient satisfaction is also very high; however, proportionally more patients received only information on living donation, which very likely occurred because that is the preferred mode of donation in that country).

Achieving equality in transplantation requires that all suitable candidates — irrespective of their ethnicity, race, sex, education, socio-economic status, religion, health literacy, or language barriers — have an equal probability of receiving a transplant. However, inequalities are rife in medical practice 94 and deserve specific attention. Approaches to removing barriers to transplantation can in many instances be adapted to the specific needs of minority patient groups, as exemplified by the implementation of measures to increase access to transplantation for Jehovah’s Witnesses in Croatia (Supplementary Box 3 ). However, despite the existence of legal frameworks designed to prevent discrimination and ensure equitable access to health care and transplantation, in practice, access to transplantation remains extremely problematic for certain populations, especially for minority groups and immigrants, including undocumented migrants. These individuals face considerable barriers in access to health care, in particular to chronic therapies, including transplantation services. These barriers can arise from willing or unwilling institutional discrimination, the bias and prejudices of health professionals, as well as from non-familiarity of migrants with the medical model of the host country 94 , 95 . Educational approaches developed for the general public may not be appropriate for these communities, and specific efforts are required to ensure that these approaches reach affected individuals and are developed with input from the relevant populations. Comorbidities, such as diabetes, can be more prevalent in some ethnic minority populations, and negatively affect donation and transplantation rates 96 . Inequities among migrant populations are also closely linked to socio-economic status, exemplified by the well-documented associations between socio-economic status, waitlist placement and receipt of a transplant 97 . In the USA, African Americans, Hispanics and individuals of Asian ancestry are less likely than white Americans to receive a deceased donor kidney transplant 89 . In the UK, individuals of Asian and African Caribbean ancestry comprise 8% of the general population but 23% of the kidney transplant waitlist 98 , 99 . In the USA, the fact that the proportion of waitlisted patients vastly exceeds the number of available organs from donors of the same ethnicity has prompted adaptations of the kidney transplant allocation system, for example, by calculating the wait time from the start of dialysis instead of start of waitlisting, and by prioritizing the most sensitized patients 89 . These measures have reduced disparities in access to transplantation by increasing the proportion of actively waitlisted patients from under-represented communities and by decreasing inactive waitlisting of these individuals. These observations indicate that international and national authorities as well as professional organizations should provide regulations or recommendations to avoid discrimination in the selection process of donors and recipients for transplantation.

Disparities in access to transplantation among under-represented communities can also arise from a lower awareness of donation and transplantation processes, religious or cultural distrust of local medical professionals, fear of racism, linguistic obstacles, a lack of awareness of service availability, financial constraints, and a lack of perception of mainly asymptomatic chronic illnesses, such as kidney failure 95 , 100 . Given the importance of ethnicity as a determinant of tissue compatibility between donor and recipient, educational programmes aimed at increasing outreach to under-represented populations and at overcoming cultural or linguistic barriers are of critical importance. Although tissue matching is less important a determinant for liver or cardiothoracic transplantation than for kidney transplantation, the cultural and societal concerns are also evident in this setting.

Other subgroups, such as infants and highly sensitized individuals, also experience barriers to transplantation. Dedicated transplantation programmes, such as those that focus on identifying donor organs of appropriate size or on detecting appropriate donors using specific cross-matching methods, are needed 101 .

Finally, women are more likely to become a living donor than to receive a living organ donation 102 . Moreover, transplant recipients — irrespective of whether the organ is from a living or deceased donor — are predominantly male, especially for kidney transplants 103 . Although this inequality in access to transplantation might reflect a sex bias in the incidence of pathologies necessitating transplantation 104 , psychological and socio-economic factors also contribute to this disparity 105 , and could be prevented by addressing aspects of the transplantation system, such as inequalities in selection for waitlisting or unbalanced prioritization scores, that disadvantage women 105 .

Opt-in versus opt-out and donor registration

Considerable variation in legal frameworks for donation exists across the EU. Several EU and EU-associated countries, including Ireland, Germany, Denmark, Estonia and Switzerland, use opt-in legislation whereby consent for donation needs to be specifically sought from the donors and/or their families. Other countries apply an opt-out system (that is, consent for donation is presumed, unless the potential donors have officially registered their refusal). The Netherlands has in the past few years transitioned to an opt-out system, whereas the German government was unsuccessful in making this step. Most European countries that use an opt-out system apply a ‘soft approach’, allowing for objections by family members but supported by moral and legal leverage provided by the policy acceptance of the opt-out approach.

Compared with opt-in systems, opt-out systems are associated with higher donor rates ranging from 23.3% to 61.5% according to some studies 106 , 107 . However, a 2019 study of 35 countries found no difference in transplantation rates between opt-out and opt-in systems 108 . Multivariate analyses performed as part of that study showed that opt-out systems were independently predictive of lower rates of living donation. The divergent findings of studies that have compared opt-in and opt-out policies may be attributable to residual confounding resulting from differences in definitions, the selection of countries analysed, the period of analysis, or the choice of adjustment factors. Although there seems to be a gradual shift towards the use of opt-out systems, available data suggest that this approach as such is not sufficient to increase transplantation rates, and thus the adoption of opt-out legislation should be accompanied by other measures 109 , such as all those outlined in this Roadmap. In addition, simplified donor registration procedures such as those applied in Italy (Supplementary Box 4 ) offer an approach to encouraging donation without imposing judicial pressure 110 .

Financial and infrastructural barriers

Clinical activity related to transplantation should be subject to fair remuneration. Insufficient reimbursement to hospitals for deceased donation and organ retrieval is a major issue in some countries and may adversely affect donation rates. In many countries, the reimbursement for different kidney replacement therapies is disproportionate, such that dialysis is financially more rewarding than transplantation for care providers.

In the USA, for example, patients who receive dialysis at units managed by for-profit organizations have a lower chance of undergoing transplantation than patients treated at not-for-profit units 111 , 112 . Although difficult to extrapolate these findings to the EU, this suggests that the current imbalance in financial yield between different kidney replacement therapies can jeopardize transplantation rates, but also that differences in economic models governing health care should be considered by health-care administrations to incentivize transplantation over other approaches. For example, additional reimbursement could be given to units that have achieved high rates of transplantation among their population of patients with end-stage organ failure (Supplementary Box 5 ).

Furthermore, expansion of transplantation programmes should be supported by investment in adequate infrastructure. Recommendations for optimal infrastructure requirements and staffing of transplantation and intensive care units — including optimal numbers of surgeons, operating theatres, intensive care facilities, appropriate hospitalization and outpatient follow-up facilities, and well-trained nursing and medical staff — are all urgently needed.

Long-term preservation of graft function

Long-term preservation of graft function is the most important outcome for transplant recipients 43 . Maintenance of graft function entails avoidance of damage by rejection, medication, complications, comorbidities, or damage to other organs (for example, avoiding kidney damage in heart or liver transplant recipients due to immunosuppressive medication), but also requires specific attention to fatal outcomes or complications that might jeopardize future transplantation procedures (such as opportunistic infections, malignancy, cardiovascular disease, post-transplantation diabetes mellitus) 50 , 113 . In the first 10 years after transplantation mortality is substantially higher than that of the general population, at around 40% 114 , with a similar percentage of fatalities over the subsequent 10 years 50 , 115 . In addition, at least 15% of survivors lose function of the transplanted organ per decade 116 . Of note, despite a consistent improvement in kidney graft survival in the first 5 years post-transplant between 1986 and 2015, graft survival after the fifth year of transplantation has not substantially changed over time 116 .

Several aspects of the transplantation process should be addressed to maximize the likelihood of transplant survival. Cold ischaemia time is an important modifiable risk factor for poor transplant outcomes 117 , 118 , 119 , and it is imperative that transplantation logistics are constantly reviewed and improved to keep cold ischaemia time as short as possible. Controlling organ fibrosis may be one of the few solutions to preventing long-term graft loss, but therapeutic solutions to tackle this problem are scarce 120 . For recipients of kidney transplants experiencing graft loss, timely and uncomplicated transition onto dialysis is essential, as mortality is high in the period of dialysis (re-)initiation 121 . Non-adherence to medication is a major contributor to graft loss 122 , 123 and interventions that augment adherence increase graft survival 124 . Monitoring markers of immunosuppression can also help to individualize immunosuppressive therapy to maximize drug efficacy and minimize toxicity 125 , 126 .

A critical consideration for paediatric transplant recipients is their transition to adult transplantation clinics. This transition period can be associated with reduced compliance related to the change in environment, as differences in the approach and philosophy of adult transplantation clinics may be perceived as inhospitable by adolescents who are often psychologically and socially vulnerable 127 .

A significant number of graft-survival years are lost when young donor kidneys are transplanted into older recipients and vice versa 128 . Matching the life expectancy of the intended recipient with the projected life span of the transplant is likely to maximize graft survival and cost savings 128 . Complex algorithms are required to ensure optimal matching and account for differences in population demographics. Other factors that affect long-term organ function, such as the presence of low-level preformed donor-specific HLA antibodies require further study 129 . The role of lifestyle factors and the possible role of tailored medication also deserve further consideration.

Clustering of countries

Some countries have a strong track record in living donation and others in deceased donation, but few do both well. Similarly, some may be more successful than others at transplanting specific organs. Several countries could benefit from improving their donor coordination and recruitment processes and/or from adopting or improving expanded donation criteria. Specific scenarios should be developed according to the areas that require improvement, with countries grouped according to these characteristics. Even countries that perform well overall have room for further improvement, as exemplified by Spain, which manages to improve every year upon already high transplantation rates (Supplementary Figure 1 ).

Clustering of countries with similar needs and characteristics can streamline the development of action plans that enable different strategies for each cluster. These action plans should also account for country-specific measures and include in-depth consultation with the local transplant communities, including National Competent Authorities, transplant physicians, coordinators, regulators and authorities with representatives of other countries and the EU, enabling rapid dissemination and implementation of good clinical practice. This clustering approach could group countries with specific characteristics, for example, those needing to increase living donation compared with rates of deceased donation, or those where expanded donation criteria or donation overall could be enhanced.

Benchmarking

The optimization of transplantation programmes necessitates continuous assessment with external audits and comparison of their efficiency with peer programmes 130 . A uniform registration process and quality control system for organ donation and transplantation throughout Europe is necessary to enable this benchmarking. Transparency of hospitals in reporting their performance for access to and outcomes of transplantation is essential 112 . It is imperative that pan-European transplant registries are established for each organ, to enable benchmarking and ensure that comparable results are achieved across the EU. These comparisons would inform the specific areas for development and address local factors to ensure equitable access to transplantation and to optimize outcomes across Europe. Initiatives that enable comparisons of organ donation and transplantation rates between countries, similar to that developed by the Council of Europe Committee on Organ Transplantation, can help to stimulate countries that are seeking to achieve best practices 131 . Studying the approaches of the best performers will identify a number of critical factors for success, which can then be implemented elsewhere 132 .

Specific frameworks that promote and guide appropriate evidence-based decision making in the context of transplantation should be facilitated and supported. Recommendations might include but should not be limited to criteria for acceptance of patients on the waiting list; adequate follow-up post-transplantation; criteria for DCD transplantation; standards for transplant centres to achieve a well-functioning programme supported by adequate infrastructure; and optimal conditions for donor organ recovery. The application of European recommendations should be based on a continuously audited pan-European platform but allow adaptations according to the situation of individual countries. In Spain, benchmarking of different elements of the transplantation process is one of the cornerstones of its success 39 .

Despite substantial national and trans-national progress over the past five decades, several fundamental questions in the field of transplantation remain unsolved. These range from the basic patho-physiology, immunology and molecular biology of the transplantation process and the response of the host to the donor organ, to clinical aspects and those relating to organizational, societal, psychological and quality of life issues. Transplantation research deserves specific attention for funding and support. Patients, medical professionals and society as a whole will benefit from research streamlined to focus on a number of areas and topics of prime interest (Box  2 ), with the aim of better shaping future priorities, developments and policy actions in the field.

Box 2 Suggested research topics

Approaches to improving organ quality and assessment, and increasing organ availability

Studies on novel preservation methods and new technologies for testing organ quality

Establishing pan-European registries that include follow-up data

Exploring alternative sources of organs (hybrids, xenotransplantation)

Studies of factors that affect outcomes of expanded donation criteria and donation after circulatory death

Comparison of strategies for increasing donor availability

Identification and prevention of factors leading to delayed graft function

Studies on non-HLA incompatibility

Development of strategies to combat acute and chronic rejection

Development and assessment of methods to improve transplantation rates in children, elderly individuals and highly sensitized patients

Studies of barriers to transplantation and measures to correct those; comparisons between countries

Socio-economic and societal impact of transplantation

Health-economic comparison of transplantation programmes in different EU countries

Identification of approaches to decrease the societal cost of transplantation

Studies of the ecological footprint of kidney transplantation compared with dialysis

Studies of factors preventing reemployment after transplantation

Extending the life of the transplant and reducing graft loss

Defining surrogate end points for post-transplantation outcomes

Identification of biomarkers of acute and chronic rejection, graft failure and negative outcomes at large

Detection of mechanisms causing graft dysfunction via development of fibrosis and ways of preventing this evolution

Prevention of post-transplantation malignancy and cardiovascular disease

Prevention and adequate treatment of infections after transplantation

Strategies to improve outcomes for patients with a failing kidney transplant who are transitioning to dialysis

Benchmarking, professionalism and governance

Comparisons of different types of machine perfusion related to different organs for preservation, especially donation after circulatory death

Certification of skills of professionals and professional regulation

Benchmarking of transplantation outcomes (based on registry data)

Study of barriers to transplantation in different countries

Patient priorities

Studies on patient-reported outcomes

Studies of mechanisms that determine treatment choice (transplantation compared with alternatives such as dialysis) and suggestions as to how valid patients can be encouraged to undergo transplantation

Comparative studies of educational programmes (for the general population, patients, students, professionals) and development of best practices

Adapted with permission from ref. 136 , the European Kidney Health Alliance.

International organ exchange

Several EU countries do not have an efficient system to enable the internal offering and sharing of donated organs, nor do they collaborate in wider, usually transnational programmes for deceased donor organ exchange (such as Eurotransplant, Scandiatransplant or the South Alliance for Transplantation). At a minimum, each country should have a national sharing scheme between the local transplant centres whereby an optimal match between donor and recipient and rapid organ removal and transfer to the receiving centre are assured. Furthermore, gradual incorporation into one of the existing international exchange systems should be encouraged as an approach to boost transplantation activity 42 , as exemplified by Croatia in the early 2000s, or more recently by Hungary 133 . Such programmes enable expansion of the donor pool and provide a transparent, equitable and defensible method with which to match the most appropriate donor–recipient pairs as rapidly as possible and thereby improve donor outcomes. In Switzerland, which in essence operates an individual national procurement and offering system (Swisstransplant), close to 6% of the heart transplants and 3% of the lung transplants originate from cross-border organ sharing 134 .

In 2012 the FOEDUS-EOEO platform was launched. FOEDUS-EOEO is an IT-based system that allows European countries to connect with allocation offices ensuring that the organs that cannot be matched within the national or collaborative supra-national systems are available internationally. This type of broad international collaboration is especially beneficial for children and adolescents 11 but also for other vulnerable recipients within a small donor pool (for example, highly sensitized patients).

Conclusions

Despite a good overall track record in the field of transplantation, disparities in transplantation rates between EU countries suggest that there remains ample room for improvement. The Action Plan launched by the EU in 2009 increased organ donation and transplantation and was in place until 2015, but further action is now needed to boost activity. Given the substantial differences between countries in transplantation practices (for example, in the overall transplantation rate, ratio of deceased compared with living donation, application of expanded donation and transplantation of specific organs), an in-depth analysis of discrepancies in transplantation rates is required to inform future improvements across the EU. Optimization and coordination of the donation process is indispensable for a successful transplantation programme. Education of patients, professionals and the general population as well as the provision of appropriate legal and financial frameworks is also necessary. This Roadmap, formulated from a thematic network of European organizations, gives a number of recommendations 3 that provide a framework for further action with which to better cope with the growing transplant waiting lists, reduce the number of patients dying on waiting lists, improve equality in access to transplantation, and improve the outcomes of transplanted organs, inside, as well as outside, the EU.

In this Roadmap, we assume that the primary element needed to increase the number of patients with a functioning graft is increased organ donation, which requires investment in processes to coordinate the donation process, approaches to encouraging living donation and consideration of expanded donation criteria. However, donation cannot be enhanced without a parallel investment in infrastructure, the implementation of approaches to overcoming financial barriers, and educational efforts. The remaining factors, such as the need for benchmarking, registration, research and efforts to abolish inequities, might not directly affect the total number of transplants, but their consideration remains essential for ethical reasons and because they support the other strategies. The Joint Statement on which this Roadmap is based 3 outlines a number of key areas along which policy makers could streamline such a plan (Supplementary Box 6 ). The development of such a plan should aim to stimulate increases in transplantation rates similar to those achieved following implementation of the original EU Action Plan on Organ Donation and Transplantation (2009–2015), and should involve yearly assessments and adjustments per country or group of countries, with successful countries serving as examples for the others.

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Acknowledgements

Each year the European Union commissions a number of Joint Statements regarding health issues, which bring together several stakeholder groups to make recommendations to the European Commission for the coming years. The coordination of the joint statement informing the present Roadmap was allocated to the European Kidney Health Alliance (EKHA). The EKHA represents a common effort by all European key stakeholders in kidney care (patients, nurses, physicians, foundations) to propose solutions for the challenges of kidney disease in Europe through the development of effective prevention and more efficient care pathways. In addition to the EKHA, the organizations involved in this publication and the European Commission Joint Statement are either pan-European Organizations with a focus on transplantation or transplantable organs or the National Transplant Organizations of Croatia and Spain. Specifically, these organizations are the European Society of Organ Transplantation (ESOT); the European Renal Association–European Dialysis and Transplant Association (ERA–EDTA); the ERA-EDTA Registry; United European Gastroenterology (UEG); the European Association for the Study of the Liver (EASL) and the National Competent Authorities for Organ Donation and Transplantation of Croatia and Spain. The Joint Statement was endorsed by 54 Organizations and Institutions and by 19 Members of the European Parliament. The authors are indebted to Marine Faure and Sophie Bruno (Senior Consultants, Interel European Affairs) and Nazli Gül (Consultant, Interel European Affairs) for their assistance in the preparation of the Joint Statement that is the basis for this publication.

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Raymond Vanholder

European Kidney Health Alliance (EKHA), Brussels, Belgium

Organización Nacional de Trasplantes (ONT), Madrid, Spain

Beatriz Domínguez-Gil, Beatriz Mahillo & Maria O. Valentin

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ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands

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Contributions

R.V. contributed to conceptualizing and designing the Roadmap, data analyses, the literature search and writing of the manuscript. B.D.-G. contributed to designing the Roadmap, performing the literature search, data collection and writing. G.C.O. contributed to designing the Roadmap, performing the literature search, writing and editing the manuscript before submission. M.B., H.C.-P. and J.C.C. contributed to writing of the manuscript. K.J.J. contributed to writing and data collection. B.M. contributed to data collection. V.S.S. and M.O.V. contributed to the literature search, writing and data collection.

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R.V. reports unrestricted grants to the European Kidney Health Alliance from Baxter Health Care, Astellas, Amgen, BBraun, CSL Behring, Hansa BioPharma and Viforpharma, for the organization of the annual EKHA Kidney Forum at the European Parliament. H.C.-P. reports personal fees from Intercept, Gilead, Promethera and Genfit, outside of the submitted work. K.J.J. reports grants from ERA-EDTA during the conduct of the study, and personal fees from Fresenius Medical Care, outside of the submitted work. The other authors declare no conflicts of interest.

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(EKHA). A non-governmental advocacy organization promoting the cause of kidney patients at the level of the European Union and the European Union member states.

A situation in which a kidney transplant candidate receives a donor kidney before starting on dialysis.

Programmes that enable sharing of organs between donor–recipient pairs who cannot exchange a donor organ directly with each other.

A category of patients on the transplant waitlist who are temporarily ineligible for transplantation because of medical, social or personal reasons.

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Vanholder, R., Domínguez-Gil, B., Busic, M. et al. Organ donation and transplantation: a multi-stakeholder call to action. Nat Rev Nephrol 17 , 554–568 (2021). https://doi.org/10.1038/s41581-021-00425-3

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  • Published: 27 May 2020

Knowledge, attitude and willingness to donate organ among medical students of Jimma University, Jimma Ethiopia: cross-sectional study

  • Fantu Kerga Dibaba   ORCID: orcid.org/0000-0003-4331-3907 1 ,
  • Kabaye Kumela Goro 1 ,
  • Amare Desalegn Wolide 2 ,
  • Fanta Gashe Fufa 1 ,
  • Aster Wakjira Garedow 1 ,
  • Birtukan Edilu Tufa 3 &
  • Eshetu Mulisa Bobasa 1  

BMC Public Health volume  20 , Article number:  799 ( 2020 ) Cite this article

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The lack of organ donors has become a limiting factor for the development of organ transplantation programs. Many countries are currently facing a severe shortage of organs for transplantation. Medical students, as future doctors can engage in the role of promoting organ donation by creating awareness and motivating the community to donate their organs besides their voluntary organ donation. The aim of this study is to assess the knowledge, attitude and willingness of undergraduate medical students’ towards organ donation at Jimma University.

A cross-sectional study was conducted among 320 medical students from year I to internship using questionnaire in order to assess their knowledge, attitude and willingness regarding organ donation. Data collected was entered using epidata and analyzed using Statistical Package for Social Sciences (SPSS) software version 20.

Mean (±SD = standard deviation) age of participants was 23.48 ± 17.025 years. 57.8% of the study subjects were male. There was a statistically significant interaction effect between gender and year of study on the combined knowledge questions (dependent variables) F(25,062) = 1.755, P  = 0.014, Wilk’s Λ  = .033. Variables which were related to a positive attitude towards organ donation were: being of the male sex (Odds Ratio = 1.156); having awareness about organ donation (Odds Ratio = 2.602); not having a belief on the importance of burying intact body (Odds Ratio = 5.434); willingness to donate blood (Odds Ratio = 4.813); and willingness to donate organ (Odds Ratio = 19.424).

High level of knowledge but low level of positive attitude and willingness was noticed among the study participants toward organ donation.

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The need for organ donation has increased globally in the past years due to an increase in organ failure [ 1 ]. Every day in the United States of America (USA), 21 people die waiting for an organ and more than 120,048 men, women, and children await life-saving organ transplants [ 2 ]. Accor-ding to a survey In India every year about 5 lakh (500,000) people die because of non-availability of organs and 1.5 lakh(150,000) people await a kidney transplant but only 5000 get among them [ 3 ]. Recently published report has found that approximately 3 million people in sub-Saharan Africa diagnosed with end-stage kidney disease (ESKD) die each year due to renal failure [ 4 ]. In Kenya, the kidney transplant queue at Kenyatta National Hospital in Nairobi stretches all the way to 2018, despite the hospital performing the procedure on a weekly basis [ 5 ]. In Ethiopia, between 130 and 150 corneas are collected yearly. However, there are more than 300,000 blind people waiting for corneal transplantation [ 6 ].

There are no sufficient facilities which provide maintenance and transplantation therapy for failed organs in Ethiopia. Currently there are only cornea and living related kidney transplant programs established in the nation’s capital Addis Ababa [ 6 ]. Facilities which provide maintenance dialysis has been in existence in the country starting from 2001. Hemodialysis has become on hand in private institutions, mostly in Addis Ababa the capital city of the country, and more recently in a few other urban and semi-urban regions. Currently, there are 30 hemodialysis centers with a total of 186 hemodialysis chairs and approximately 800 patients on hemodialysis. Among patients on maintenance dialysis, only about one-third receives treatment 3× per year because the cost of hemodialysis is unaffordable for the majority of patients [ 7 ].

Organ transplantation is one of the great advances in modern medicine and is the best option for failed organ. Transplantation is defined as the transfer of human cells, tissues or organs from a donor to recipient with an aim of restoring normal physiology in the body [ 8 ]. In Ethiopia, up to 2018, 1336 corneal and 90 living donor kidney transplants have been performed. Currently the kidney transplant program accepts candidates only at the age of 14 and above [ 7 , 9 ].

Some studies found out that the issue of organ donation is multifactorial. In developed countries relational ties, religious beliefs, cultural influences, family influences, body integrity, and previous interactions with the health-care system were reported as the potential factors for organ donation [ 10 ]. However, there are limited studies regarding organ donation and the factors that influence it in developing countries for instance, in Kenya there are peoples who believe a person’s body should be intact when buried this belief and other sociocultural and legal factors hinder the harvest of organ from patients who have been medically declared to be in a “state of dying” [ 5 ].

Among 100,000 of people died each year are believed to be potential donors; however, only less than 200 actually become donors [ 11 ]. This indicates that a lot should be done on awareness creation towards organ donation. As a new approach in solving the organ shortage, it has been suggested that awareness about organ donation to be made a part of school education [ 12 ]. In Ethiopia we suggest to use religious leaders besides to incorporating the issue in school education, because Ethiopia is religious country. Our country has close ties with all three major Abrahamic religions, and it was the first in the region to officially adopt Christianity in the fourth century. Christians account for 63% of the country’s population, with 43.5% belonging to the Ethiopian Orthodox Church, 18.5% Protestant and 0.7% Catholic. Ethiopia has the first Hijra in Islamic history and the oldest Muslim settlement on the continent. Muslims account for 34% of the population, traditional 2.7% and other 0.6% [ 13 ].

In Ethiopia there are no data on public perception of organ donation and transplantation Therefore, the present study was designed to assess the knowledge, attitude and willingness of organ donation among medical students. Medical students, as future doctors can take up the role of promoting organ donation by educating and motivating the public to initiate them donate their organs besides their voluntary organ donation. Therefore, assessing medical student’s knowledge, attitude and willingness to donate organ is very important to decrease the shortage of organ in the future.

Study setting and subjects

A cross sectional study was carried out for 3 months from May to July 2019among under graduate medical students in Jimma University after obtaining Institutional Ethical Clearance from institutional review board (IRB) of Jimma University. The University is located in Jimma town which is 352 km from Addis Ababa, the capital city of Ethiopia. Jimma University is one of the most distinguished centers of excellence in medical education in the country.

Sample size

All medical students (from first to internship) registered in the year 2018/2019 were the source population. Based on their training background, medical students in Jimma University were divided into two groups: PRE-CLINICAL and CLINICAL. PRECLINICAL is subdivided in to two groups: Year I (PC-I) and Year II (PC-II) and CLINICAL in to three subgroups Year III(C-I), Year IV(C-II) and internship. The sample size was calculated by using simple proportion formula assuming a prevalence of 50% for knowledge, attitudes and willingness of organ donation, a 95% confidence interval and a sample error of 5%. This was adjusted for 10% non-response rate; bringing the total sample size to 320.There were about 1200 students studying in Jimma University medical school.

The questionnaire was distributed to undergraduate medical students during lecture hours in the classroom and in ward during attachment. They were instructed not to discuss the questions among themselves. The importance of the study was explained and confidentiality regarding the participant response for the questions was ensured.

A 20-item self-administered questionnaire was developed. The first part of the questionnaire gathered the demographic details from the students, which included age, gender, year of study and religion. The second, third and fourth sections assessed the levels of knowledge (Q1–7), attitude (Q8–16) and willingness (Q17–20) to donate organ, respectively.

The students were grouped as those who do have adequate and inadequate knowledge based on their score.

Adequate knowledge is when 4–6 questions were answered correctly and inadequate when less than 4 questions answered correctly out of 6 knowledge questions.

Attitude was assessed by using 9 attitude statements and respondents were categorized as those who do have positive attitude and negative if they agree to 6–9 and less than 6 attitude statements respectively.

Statistical analysis

Data was entered to EPI data and exported to SPSS version 20 for analysis. Descriptive statistics like percentage and mean and standard deviation were used to present socio-demography, knowledge, attitude and willingness response of the participants. Multivariate analysis was used in order to relate those factors that gave a significant result: One way Multivariate analysis of variance (MANOVA) was used to see a significant relationship between one independent variable and dependent variables and two ways MANOVA was considered to know if there was an interaction between two independent variables on the dependent variables. One way Analysis of Variance (ANOVA) was used for comparing means of variables to know among which groups were the differences. Finally, Odds ratio analysis was used to find out variables which were related to a positive attitude towards organ donation.

Out of 320 participants 57.8% were male. Mean (±SD = standard deviation) age of participants was 23.48 ± 17.025 years. Majority of the participants were orthodox (49%.7) and the least percentage being others constituting wakeefeta, apostolic, humanity, atheist and Seventh Day Adventist (SDA) (2.8%) (Table  1 ).

96.9% of the students had awareness about organ donation. Only 25% had knowledge that there was no age limit for organ donation (Table  2 ).

There was a statistically significant difference in level of knowledge between study groups as demonstrated by one-way ANOVA(F (4,315) =7.6, p  = 0.001). Based on the post hoc test the significant difference was between PC-I and C-II( p  = 0.001), PC-I and intern( p  = 0.001), PC-II and C-I( P  = 0.022) and PC-II and intern( p  = 0.010). The mean for PC-I, PC-II, C-I, C-II and intern is 1.37, 1.27, 1.20, 1.08 and 1.05 respectively. Therefore, PC=I had significantly higher level of knowledge when compared to the rest year of study (Table  3 ).

74.1% of the participants agreed to support family members if they wish to become an organ donor. Majority of the study subjects (91.9%) felt that awareness about organ donation should be made a part of school education (Table  4 ).

According to our finding, males were 1.156 (Odds Ratio = 1.156) times likely to have positive attitude towards to organ donation as compared to female. Students who had an awareness about organ donation were 2.602 (Odds Ratio = 2.602) times likely to have positive attitude towards to organ donation as compared to those who were unaware. The other variables which were related to a positive attitude towards organ donation were: not having a belief on the importance of burying intact body (Odds Ratio = 5.434); knowing definition of brain death (Odds Ratio = 1.257); not having a belief that there is a danger of misuse, abuse or misappropriation of donated organ (Odds Ratio = 2.777); willingness to donate blood (Odds Ratio = 4.813); and willingness to donate organ (Odds Ratio = 19.424).

58.1% of the study participants were willing to donate their organs and allow organ donation after the death of a family member. Majority of the study subjects (88.4%) did not like to take money for organ donation. 90.3% of the study subjects were willing to donate blood and 58.1% were willing to donate their organ (Table  5 ) (Fig.  1 ).

figure 1

Distribution of study subjects according to the source of information about organ donations. i.e. Note: No of respondents may be greater than sample size as multiple options were allowed. Most common source of information about organ donation was found to be internet (61%) television (50%) followed by, Movies and health care providers 46 and 45% respectively

There were an association between willingness and attitude. Willingness to donate organ was significantly higher among those who do have positive attitude (88.2%) as compared to those with negative attitude (11.8%) (Table  6 ).

There was a statistically significant difference on belief of burying intact body between religions as demonstrated by one-way ANOVA(F (3,316) =4.5, p  = .004). Based on the post hoc test the significant difference was between Protestant and Muslim ( p  = .007). The mean for protestant is 1.83 and Muslim 1.56.Therefore, Protestant had significantly higher belief on the importance of burying intact body when compared to Muslim (Table  7 ).

There was a statistically significant difference between males and females when knowledge questions considered jointly Wilk’s Λ  = .96, F (6,312) = 2.247, P  = 0.039, multivariate ƞ 2  = 0.041 and attitude statements consider jointly Wilk’s Λ  = .94, F (9,310) = 2.301, P  = 0.016, multivariate ƞ 2  = 0.063.

When year of study is considered, there was a statistically significant difference among year of studies when knowledge questions considered jointly Wilk’s Λ  = .75, F (25,079) = 3.966, P  < 0.001, multivariate ƞ 2  = .071, attitude statements considered jointly Wilk’s Λ  = .77, F (37,152) = .766, P  < 0.001, multivariate ƞ 2  = .065 and willingness questions considered jointly Wilk’s Λ  = .93, F (12,828) = 2.072, P  = 0.017, multivariate ƞ 2  = .026.

Two way MANOVA was considered to know if there was an interaction between two independent variables on the dependent variables. There was a statistically significant interaction effect between gender and year of study on the combined knowledge questions (dependent variables) F (25,062) = 1.755, P  = 0.014, Wilk’s Λ  = .033.

Knowledge of the participant

Organ failure and shortage of donated organs are global problem. Among 100,000 of people died each year are believed to be potential donors; however, only less than 200 actually become donors [ 9 ]. The widespread shortage of donated organs indicates that there is low donor rate worldwide; In Ethiopia there is no data on rate of organ donation. In 2017 Spain had the highest donor rate in the world at 46.9 per million people, followed by Portugal (34.0 per million), Belgium (33.6 per million), Croatia (33.0 per million) and the US (32.0 per million) [ 14 ]. Donated organs are the major pre-requisite for consistency of organ transplantation program; one of the solutions to increase organ supply is to assess public knowledge, attitude and willingness towards organ donation and taking an action based on the data. In our country there is no study done on people’s perception towards organ donation this background pledges us to conduct this study.

In our study 96.9% of the participants heard about organ donation which is similar to study done by Annadurai et al and Jothula et al. [ 15 , 16 ] both reported that 100% of the participants were aware about organ donation.74.1% of the participants were aware about the meaning of organ donation which is relatively higher than the study done by Annadurai et al. [ 15 ]. In the present study, level of knowledge was significantly higher among PC=I (year I) students as compared to the other year of study this finding was similar to study done among undergraduate dental students of Panineeya Institute of Dental Sciences and Hospital, which showed higher average knowledge among first-year students [ 17 ]. In this study, only 82.5%of medical students had adequate knowledge about organ donation which is relatively higher than the study done on final semester medical students by Karini et al. which showed that only 56% of them were having adequate knowledge [ 18 ].

In the present study the main sources of information about organ donation was found to be internet (61%) and television (50%).This was similar to study conducted in USA and Australia [ 19 , 20 ]. However; Similar findings were observed by Sindhu et al. and Jothula KY et al. [ 16 , 21 ]. The third source of information about organ donation in our study are health care providers (45%) which is relatively higher than the study done by Annadurai et al. [ 15 ] which reported 34.1%. this finding showed that health care providers are playing undeniable role in creating awareness towards organ donation in Ethiopia.

206(64.4%) of our study participants had identified all the organs that can be donated. This finding was higher than the study done by Annadurai et al. [ 15 ] and Karini et al. [ 18 ] which reported 16.1 and 26% respectively. In the present study 80(25%) of the students knew that there is no age limit for organ donation which is approximate to Sucharitha et al. and lower than Jothula KY et al. [ 16 , 22 ].

Attitude of medical students regarding organ donation

201(62.8%) of our study subjects have a positive attitude towards organ donation which is lower than the study in Spain and India which found 80 and 71.3% respectively [ 23 , 24 ]. 91.9% of this study subjects, felt that awareness about organ donation should be included in school curriculum which is similar to Adithyan et al. reported that 91.2% of the subjects felt the need for revision of medical curriculum on organ donation [ 25 ] Our study found out that 251(78.4%) of the study subjects would like to motivate others for organ donation which is lower than to the Vinay et al [ 26 ].

77(24.1%) of our study subjects belief that person’s body should be intact when buried A study in USA reported that 8% of participants strongly agree and 11.7% agree to this statement which is almost similar to our finding [ 19 ]. In our study being of the male sex (Odds Ratio = 1.156) was related to a favorable attitude towards to organ donation; in contrast, a study done in Spain reported that being of females sex (Odds Ratio = 1.739) was related to a favorable attitude [ 23 ]. In our study not having a belief on the importance of burying intact body (Odds Ratio = Ratio = 5.434) was one of the variables which affect positive attitude towards to organ donation which was similar to a study in USA [ 19 ]. A study done in Spain reported being a blood donor (OR = 2.824) as a variable related to a positive attitude towards to organ donation similarly in our study we found out willingness to donate blood (Odds Ratio = 4.813) as a variable to a favorable attitude.

Willingness of medical students to donate organ

In this study 186(58.1%) of the study participants were willing to donate their organ which is similar to a study done in USA [ 20 ] and lower than Payghan et al. and Vinay et al revealed that almost 90% of study participants were willing to donate their organs [ 26 , 27 ]. The present study found out that there is a significant association between attitude regarding organ donation and willingness to donate organs which is different from the finding by Ali et al. and by Dasgupta et al. [ 28 , 29 ] which reported that there was a significant association between attitude and knowledge acquired. Though taking money for organ donation is unethical 11.6% of our study participants would like to take money for organ donation which was higher than study by Jothula KY et al. [ 16 ].

Though most of the students had adequate knowledge, still gaps exist in their attitude and willingness. This implies the need for an intensified and sustained education to raise attitude and willingness of the students towards organ donation.

Recommendations

Most of the students (91.9%) felt that awareness about organ donation should be made a part of school education; until it included in school curriculum, we recommend the students to acquire an adequate knowledge by themselves; In our study the most common source of information about organ donation was internet; so, they can browse more to acquire additional knowledge and make informed decision.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Analysis of variance

Clinical-II

End-stage kidney disease

Institutional Review Board

Jimma University Medical College

Multivariate analysis of variance

Pre-clinical-I

Pre-clinical-II

Seventh Day Adventist

Statistical Package for Social Sciences

United States of America

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The study was funded with the support of Jimma University; Faculty of Health Science. The funding body has no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript.

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Fantu Kerga Dibaba, Kabaye Kumela Goro, Fanta Gashe Fufa, Aster Wakjira Garedow & Eshetu Mulisa Bobasa

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FKD, EMB, KKG, ADW, FGF, AWG, BET involved in the data collection. FKD analyze the data and FKD and EMB prepared the manuscript. All authors read and approved the final manuscript.

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The study protocol was approved by the institutional review board (IRB) of Jimma University, College of Health Sciences and ethical clearance was obtained with the Reference Number IHRPGD/3019/2019. Permission of data collection was granted with formal letter from chief executive director of Jimma University Medical College (JUMC). The purpose and protocol of this study was explained, participants signed informed written consent.

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Dibaba, F.K., Goro, K.K., Wolide, A.D. et al. Knowledge, attitude and willingness to donate organ among medical students of Jimma University, Jimma Ethiopia: cross-sectional study. BMC Public Health 20 , 799 (2020). https://doi.org/10.1186/s12889-020-08931-y

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Organ donation: whether we opt in or out, research finds it’s the will of our family that matters

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Alberto Molina Pérez is a member of ELPAT-ESOT (Ethical, Legal and Psychosocial Aspects of Organ Transplantation, a division of the European Society for Organ Transplantation).

David Rodríguez-Arias collaborates in several research initiatives with the following organisations linked to organ donation and transplantation: European Society of Organ Transplantation and Spanish Organización Nacional de Trasplantes.

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Organ transplantation allows patients who are suffering from organ failure to receive a healthy organ from a donor. This procedure can help to extend and improve the lives of recipients, and is often the only hope for people who are in need of a transplant.

Unfortunately, there are not enough organs available for all the patients who need them. In the European Union, although 36,000 patients received a transplant in 2021, 20 patients died every day while waiting for an organ.

Difference among consent laws

One strategy to address the shortage of transplantable organs is to increase the pool of potential donors by making changes to the system of consent. There are two main consent policies for deceased organ donation in place around the world:

Opt-in: individuals must actively consent to becoming organ donors after they die;

Opt-out: individuals are deemed to have consented to organ donation unless they expressly indicated that they do not.

In recent years, several European countries have changed their laws from opt-in to opt-out, including Greece , Iceland , the Netherlands , Switzerland and the United Kingdom . More European countries are considering it, such as Germany, Denmark and Romania.

The rationale behind this shift is that opt-out systems could increase organ procurement rates , as the default assumption is that the individual is willing to donate . This eliminates the need for people to actively register as organ donors, which can be a major barrier for some people.

Family involvement

Although several studies have been conducted to assess the actual impact of consent policies on organ procurement rates, their results are conflicting.

Overall, the evidence shows that opt-out systems are associated with higher rates of organ retrieval. However, it is not clear if and to what extent the introduction of an opt-out system, by itself, causes the increase.

In our study , we tried to find out. To exclude the influence of other factors, we focused on how individuals’ preferences and decisions, or lack thereof, directly determine the outcome, i.e. whether organs can be retrieved or not.

On the face of it, the situation seems straightforward. Doctors always respect people’s preferences, regardless of the system. When the deceased wanted to become a donor, doctors proceed. When the deceased didn’t want to donate, doctors do not proceed. The difference between opt-in and opt-out would only therefore show up when the deceased did not express any preference. If an opt-out system is in place the organs can be retrieved under these circumstance. If an opt-in system is in place, they cannot be retrieved.

However, the family also has a role to play in the decision-making process. In most countries, both opt-in and opt-out, the family is consulted about organ donation. In practice, therefore, instead of retrieving or not retrieving organs by default, doctors typically follow the family’s decision.

In our research, we found that the only time they didn’t was when the family of the deceased was unable to make a decision on the matter or couldn’t be located by medical teams in time – or when the deceased didn’t have any relatives. It is only in these circumstances, therefore, that an the opt-out system makes a difference.

Consent systems only make a difference on rare occasions

Most experts in the field know that this circumstance is uncommon, but this is too vague. Hence, to answer this question, we sought data from both scientific articles and institutional reports all over the world.

Based on data from 20+ countries, we found that this circumstance is indeed rare. Overall, it occurs in less than 5% of the cases. In Germany, Denmark, Finland, Spain and the United Kingdom, statistics show that it ranges from 0 to 2% of all cases of potential organ donors.

Therefore, according to our analysis, changing the system of consent in any of these countries, all other things being equal, would have a very limited direct impact on organ donation rates. However, this does not necessarily mean that moving from opt-in to opt-out is ineffective, because the move may have indirect consequences. For example, increased press coverage of organ donation could raise public awareness of the organ shortage and reduce the number of individuals and families who object.

What our research shows is that politicians and people in general should perhaps not put so much focus on changing consent policies for donation and more on modifiable factors influencing family decision-making, such as building trust by providing high quality care for the potential donor and adequate information on the process of organ procurement, and by using well trained professionals in the approach.

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Worldwide barriers to organ donation

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Importance: The disparity between patients awaiting organ transplantation and organ availability increases each year. As a consequence, organ trafficking has emerged and developed into a multibillion-dollar-a-year industry.

Objective: To identify and address barriers to organ donation in the United States and globally.

Evidence review: Evidence-based peer-reviewed articles, including prospective and retrospective cohort studies, as well as case series and reports were identified in a PubMed search of organ donation, barriers to organ donation, brain death, donation after cardiac death, and organ trafficking. Additional Internet searches were conducted of national and international transplant and organ donation websites and US Department of Health of Health and Human Services websites. Citation publication dates ranged from August 1, 1968, through June 28, 2014.

Findings: The lack of standardization of brain death and organ donation criteria worldwide contributes to a loss of potential donors. Major barriers to donation include variable clinical and legal definitions of brain death; inconsistent legal upholding of brain death criteria; racial, ethnic, and religious perspectives on organ donation; and physician discomfort and community misunderstanding of the process of donation after cardiac death. Limited international legislation and oversight of organ donation and transplant has contributed to the dilemma of organ trafficking.

Conclusions and relevance: An urgent need exists for a global standard on the definition of brain death and donation after death by cardiac criteria to better regulate organ donation and maximize transplantation rates. Unified standards may have a positive effect on limiting organ trafficking.

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Organ Donation: Transplant & Research

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By Maria Menikou, Category Director, Human Biological Samples at Scientist.com and Gina Dunne Smith, Executive Director at International Institute for the Advancement of Medicine (IIAM).

What is Organ Donation

‘Organ donation is a precious gift that saves lives.’

We have all heard stories of people in need of an organ to save their life, but we rarely hear about organ donors, each one being able to help up to eight patients.

Organ donation is a complicated, highly regulated process that requires many parameters to align before a recipient can receive a new organ. Here are just a few considerations:

  • biological suitability/cross-matching
  • physiological suitability (size and age)
  • organ functionality
  • ischemic damage
  • perfusion (circulation) quality

It is important to note that for organ transplantation no organ will be retrieved unless a matching recipient has been found. If any single factor does not meet the parameters at any point of the organ donation process, then the organ(s) will be rejected for clinical transplantation purposes. However, if the donors or the next of kin have previously given consent for research purposes, any organs already retrieved and deemed unsuitable prior to transplantation can be re-directed to research. It is worth noting here that post-mortem donations for research purposes only are also possible but follow a different clinical and compliance pathway.

“We thank the families who have selflessly entrusted us with their most precious donations. Your courage and generosity enable the research community to develop lifesaving technology and improve the lives of others.” – IIAM researcher

Who can donate organs, and what organs can be donated?

Most people, regardless of age or medical condition, can donate organs for research. In fact, a medical history that might make an organ or tissue unsuitable for a transplant recipient may be the very thing a researcher is looking for to carry out important research to develop potential treatments. Organ donors for transplantation can simultaneously be a donor for research, provided that proper consent has been granted.

The most commonly transplanted organs are:

  • Lungs, which can go into one recipent each
  • Liver, which can be split and implanted into two recipients
  • Kidneys, which can go into one recipient each
  • Bowels, which are often implanted along with the pancreas

Tissues can also be donated, such as whole eyes or corneas for restoring eyesight; skin, which is commonly used to treat burn victims; and bone, which helps reconstruct orthopaedic injuries.

Who is responsible/can facilitate organ donation?

Each country has its own network that manages the local transplant lists, donor lists, communications and consent, the logistical aspects of the process as well as maintaining all the related records. A few examples of these organisations are listed below.

United States: United Network for Organ Sharing (UNOS) is the private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government. Organ and tissue donation is initially coordinated by one of the 57 organ procurement organizations (OPO) in the U.S.

United Kingdom: National Healthcare Service Blood & Transplant (NHSBT) safely collects and processes blood donations for transfusions. They support and care for organ, tissue and stem cell donors and patients and support clinical research in order to producing new and pioneering products and services to improve patient health, including supporting clinical trials. Interestingly, England, Wales and Scotland have changed their laws to an opt-out system, where all adults are considered to have agreed to be an organ donor, unless they have recorded a decision not to donate.

Did you know? Organ donation is always discussed with the family should donation be possible, so it’s important that your family know what you want. - NHSBT

France: France has employed an opt-out system for organ donation under the Loi Caillavet (‘Caillavet Law’), which was passed in 1976, making everyone an organ donor except for those who have explicitly refused, as well as minors, and those under someone else’s guardianship (such as the mentally disabled).

The French Agency of Biomedicine (Agence de la biomédecine ) is the public institution created in 2004 Bioethics Law to oversee organ and tissue procurement and transplantation, heamatopoietic stem cell harvesting and transplantation, medically assisted procreation and human embryology and genetics.

For more information surrounding local legislation regulating the provision of human samples for research, see the COMPLi HBS Legislation Series .

How does the allocation of organs occur in research?

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In most cases, research studies are ranked in order of importance in terms of impact on public health. Therefore, in order to obtain tissues for research, the managing organization will request interested researchers to complete certain project requirements that will be kept on file to be matched in future referrals of donor organs/tissue. For example, IIAM requires all research clients to have an approved Application and Biomaterial Transfer Agreement vetted by an internal and external review committee.

In each country the responsible body (e.g., IIAM in the U.S.), will receive calls from Organ Procurement Organizations with organ referrals for research. These organizations then screen the donor information to confirm proper authorization/consent for research and review vital medical and social information. The organ will then be matched to a research client’s criteria against the donor information and begin disseminating the organ profile and allowing the researcher to accept the offer. Upon acceptance, organ recovery, preservation and transportation instructions are arranged.

Advancements made through research

Improving the process and outcomes of transplantation:

Normothermic perfusion machines: Donation of organs from donors after declaration of brain death (BD), or from donors after cardiac death (DCD), is often the only source of transplantable organs; however, the combination of warm ischemia (cessation of blood supply) and cold preservation can be highly detrimental to the transplantable organ and may lead to delayed graft function or organ rejection. Therefore, research has been focused on improving the quality of the procured organs using normothermic (i.e., body temperature) perfusion with oxygenated blood to increase the number of transplantable organs. Such devices have been created for the liver, heart, lungs and kidneys.

Nasralla et al, 2018 demonstrated that normothermic preservation of livers resulted in a 50% lower level of graft injury, measured by hepatocellular enzyme release, despite a 50% lower rate of organ discard and a 54% longer mean preservation time.

IIAM lung researchers have also established a lab-service ‘lung rehabilitation’ center enabling lungs, and potentially other organs, that were previously rejected to be resuscitated, repaired and transplanted into patients!

Disease Investigation:

Liver Disease Over the past 35 years, IIAM has been a leading provider of non-transplantable livers for the research community. Primary cells, such as hepatocytes, are isolated from livers and placed in the hands of researchers in the U.S. and all over the world. Working with these cells, some investigators are looking at ways to treat acute and chronic liver failure through clinical applications of hepatocytes.

Drug Safety Additionally, many researchers are developing new or improved medicines that are first tested with liver cells to ensure they are safe and effective. Cancer, malaria, hepatitis and HIV are just a few of the diseases that have improved treatment options now considered life-saving or life-enhancing. Donor hearts help researchers investigate potential side effects of new drugs and enable the FDA to approve drugs that are proven safe from adverse of fatal cardiac events.

Diabetes IIAM is a proud provider of human pancreas for research supported by some of the largest NIH-funded projects to combat Type I and Type II diabetes. The consortium is comprised of experts from around the world who address fundamental questions relating to beta cell development and regeneration, viral infection, autoimmunity, genetics, and more. With pancreata provided through IIAM, the research facilitates in-depth analyses of neonatal to adult pancreata from organ donors with Type 1 Diabetes (T1D) or the autoantibodies that make them susceptible to the disease, as well as from healthy donors, in order to develop a comprehensive view of how T1D develops at the cellular level. A donor organ provided through IIAM enabled a research institution to show how integrating clinical information with molecular and cellular analyses identified that what appeared to be Type 1 Diabetes, was in fact part of a broader spectrum of insulin-deficient diabetes; and provided translational insight into an incompletely understood form of human diabetes.

Lung Airway Disorders With extraordinary efforts made in the research community to combat lung airway disorders, IIAM can proudly highlight yet another NIH-funded study. This team of researchers is seeking ways to trigger lung cell regeneration to ultimately help the lung development in premature babies, as well as treat adults suffering from COPD. By bringing the greatest lung development experts in the country together to work with non-diseased human lungs from the neonatal stage through 10 years of age, this research team will create a publicly accessible reference for the research community regarding normal human lung development at the structural, cellular, protein and gene level. This helps guide researchers toward novel and more effective treatments for chronic lung disease in children and adults.

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Organ Donation in undoubtably the greatest gift an individual or their family can ever give. Each organ can save a life through transplantation, or impact potentially thousands of lives through advancements in medical research!

To find out more about how to donate, reach out to your local Organ Donation organisation.

If you are interested in understanding how the donated organs are utilized in research, contact Scientist.com or visit our Human Biological Samples page .

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More than 100,000 people in the U.S. are waiting for an organ transplant.

Sadly, many may never get the call saying that a donor organ has been found. Many may not get that second chance at life. Every day in the U.S., about 17 people die because there aren't enough donor organs for all who wait for a transplant.

It can be hard to think about dying. It can be even harder to think about donating organs and tissue. But organ donors save lives.

Here are answers to some common organ donation myths and concerns.

Myth: If I agree to donate my organs, the hospital staff won't work as hard to save my life.

Fact: When you go to the hospital for treatment, the health care team tries to save your life, not someone else's. You get the best care you can get.

Myth: Maybe I won't really be dead when they sign my death certificate.

Fact: This is a popular topic in tabloids. But in reality, people don't start to wiggle their toes after a health care provider says they're dead. In fact, people who have agreed to organ donation are given more tests to make sure they're dead than are those who aren't donating organs. These tests are done at no charge to their families.

Myth: Organ donation is against my faith.

Fact: Most major faiths accept organ donation. These include Catholicism, Islam, Buddhism, most branches of Judaism and most Protestant faiths. Some religions believe organ donation to be an act of charity. If you don't know where your faith stands on organ donation, ask a member of your clergy.

Myth: I'm younger than 18. I'm too young to make this decision.

Fact: Many states let people younger than 18 register as organ donors. But if you die before your 18th birthday, your parents or legal guardian will make the decision. If you want to be an organ donor, make sure your family is OK with your wishes. Remember, children, too, need organ transplants. They often need organs smaller than adult size.

Myth: People who donate organs or tissues can't have an open-casket funeral.

Fact: Donors' bodies are treated with care and respect. And they're dressed for burial. No one can see that they donated organs or tissues.

Myth: I'm too old to donate. Nobody wants my organs.

Fact: There's no standard cutoff age for donating organs. The decision to use your organs is based on the health of your organs, not age. Let the health care team decide at the time of your death whether your organs and tissues can be transplanted.

Myth: I'm not in the best health. Nobody wants my organs or tissues.

Fact: Very few medical conditions keep you from donating organs. Maybe you can't donate some organs, but other organs and tissues are fine. Again, let the health care team decide at the time of your death whether your organs and tissues can be transplanted.

Myth: I'd like to donate one of my kidneys now. Can I do that if it's not going to a family member?

Fact: Yes. Most living donations are between family members and friends. But you can choose to donate a kidney to a stranger, so long as you're a match. You also can donate other organs and tissues, such as a lung or part of a lung or liver.

If you decide to become a living donor, the health care team at the transplant center asks a lot of questions. They want to make sure you know the risks.

You'll have tests to make sure you're healthy and that the organ you want to donate is in good shape. The health care team also will want to be as sure as possible that the donation won't damage your health.

Myth: Rich and famous people go to the top of the list when they need a donor organ.

Fact: The rich and famous are treated the same as everyone else when it comes to organ donation. True, famous people might get a lot of press after a transplant. But who they are and how much money they have don't help them get an organ. A computer system and strict standards ensure fairness.

Myth: My family will be charged if I donate my organs.

Fact: The organ donor's family never pays for donation. The donor family pays for all the medical care given to save your life before your organs are donated. Sometimes families think those costs are for the organ donation. But the person who gets the organs for transplant pays the costs for removing the organs.

Why you should think about donating organs

Now that you have the facts, you can see that being an organ donor can have a big impact. And your donation helps not just the person getting the organ. By donating your organs and tissue after you die, you can save up to eight lives and improve 75 more. Many families say that knowing their loved one helped others helped them cope with their loss.

Think about being an organ donor if you belong to an ethnic minority group. These include Black Americans, Asian Americans and Pacific Islanders, Native Americans, and Hispanics. People in these groups are more likely than white people to have certain illnesses that affect the kidneys, heart, lung, pancreas and liver.

Some blood types are more common among minority groups. The blood type of the donor usually needs to match the blood type of the person getting an organ. So the need for minority donor organs is high.

How to donate

Becoming an organ donor is easy. Just do the following:

  • Sign up with your state's donor registry. Most states have ways to sign up. Check the list at organdonor.gov.
  • Mark your choice on your driver's license. Do this when you get or renew your license.
  • Tell your family. Make sure your family knows you want to be an organ donor.

Being on your state's organ donation registry and marking your choice on your driver's license or state ID are the best ways to make sure you become a donor. But telling your family also is important because hospitals ask next of kin before taking organs.

However, hospitals don't need to ask for consent if you are 18 or older and are on your state's donor registry or have marked your driver's license or state ID card for organ donation.

If you have named someone to decide about your health care for you if you are not able to do so, make sure that person knows that you want to be an organ donor. You also can include your wishes in a living will if you have one. But the will might not be read right at the time of your death.

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  • Organ donation statistics. Organdonor.gov. https://www.organdonor.gov/learn/organ-donation-statistics. Accessed Dec. 29, 2022.
  • Franklin GF, et al. Evaluation of the potential deceased organ donor (adult). https://www.uptodate.com/contents/search. Accessed Dec. 29, 2022.
  • Theological perspective on organ and tissue donation. United Network for Organ Sharing. https://unos.org/transplant/facts/theological-perspective-on-organ-and-tissue-donation/. Accessed Dec. 29, 2022.
  • Equity access to transplant. United Network for Organ Sharing. https://insights.unos.org/equity-in-access/. Accessed Dec. 29, 2022.
  • Frequently asked questions about organ donation for older adults. National Institute on Aging. https://www.nia.nih.gov/health/frequently-asked-questions-about-organ-donation-older-adults. Accessed Dec. 29, 2022.
  • Facts about organ donation. United Network for Organ Sharing. https://unos.org/transplant/facts/. Accessed Dec. 29, 2022.
  • Donate organs while alive. Organdonor.gov. https://www.organdonor.gov/learn/process/living-donation. Accessed Dec. 29, 2022.

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Organ donation

Frequently asked questions about organ donation for older adults.

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American Transplant Foundation

Facts and Myths

Facts and myths about organ donation.

Last Updated January 12th, 2023

FACTS: DID YOU KNOW?

Over 104,000 people in the united states are currently on the waiting list for a lifesaving organ transplant. this is the lowest it has been since 2009. the list topped at 124,000 at its height in 2014..

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  • The US saw a 7.5% increase in deceased donors last year- from 13,863 in 2021 to 14,903 in 2022
  • Another name is added to the national transplant waiting list  every 9 minutes .
  • On average,  16 people die every day  from the lack of available organs for transplant.
  • One deceased donor can  save up to eight lives through organ donation  and can save and enhance more than 75 lives through the lifesaving and healing gift of tissue donation.
  • Organ recipients are selected based primarily on medical need, location and compatibility.
  • Over 850,000 transplants have occurred in the U.S. since 1988.
  • Organs that can be donated after death are the heart, liver, kidneys, lungs, pancreas, small intestines, hands, face and uterus. Tissues include corneas, skin, middle ear veins, heart valves, tendons, ligaments, bones, and cartilage.
  • The cornea is the most commonly transplanted tissue. More than 44,000 corneal transplants take place each year in the United States.
  • A healthy person can become a ‘living donor’  by donating a kidney, or a part of the liver, lung, intestine, pancreas, uterus, blood, or bone marrow.
  • About 6,000 living donations occur each year.  One in three donors are not biologically related to the recipient.
  • The buying and selling of human organs is not allowed for transplants in America, but it  is  allowed for research purposes.
  • In most countries, it is illegal to buy and sell human organs for transplants, but international black markets for organs are growing in response to the increased demand around the world.  Learn more about Transplant Tourism.
  • Liver and kidney disease kills over 96,000 each year, more people than breast cancer and prostate cancer combined.
  • 1 in 7  or  37  million Americans  have kidney disease – and most don’t even know it.
  • Organ disease is a massive public health issue, and organ transplantation can be a lifesaving treatment option. There are nearly as many people dying per year of organ disease as are on the transplant waiting list currently!

MYTHS: Deceased Donation

There are certain things that can keep me from being an organ donor such as age, illness or physical defects.

Each person’s medical condition is evaluated at the time of their death to determine what organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.

If doctors know that I am registered to be an organ or tissue donor, they won’t work as hard to save my life.

The first priority of a medical professional is to save lives when sick or injured people come to the hospital. Organ and tissue donation isn’t even considered or discussed until after death is declared.

Typically, doctors and nurses involved in a person’s care before death are not involved in the recovery or transplantation of donated corneas, organs or tissues.

If you are rich or a celebrity, you can move up the waiting list more quickly.

Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status are never taken into account in the allocation process.  Click here for more details about organ allocation by organ type .

After donating an organ or tissue, a closed casket funeral is the only option.

Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

My religion doesn’t support organ and tissue donation.

Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

My family will be charged for donating my organs.

Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

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The American Transplant Foundation (ATF) is the only 501 (c)(3) nonprofit in the country that provides three tiers of support for living donors, transplant recipients, and their families. We go beyond awareness by providing real help to patients who need it the most. Join us and be part of the community fighting for the lives of those on the transplant wait list.

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Death, Trust, and Organ Donation: Ethics and Law of Normothermic Regional Perfusion

NRP (Normothermic Regional Perfusion) is a new technique used by some transplant centers to improve the quality of organs obtained during donations acquired after death by cardiac criteria (DCD). It has not yet been used at CHOP, but Gift of Life is requesting that we implement it. Traditionally in DCD, life sustaining technology is removed, the heart stops beating, and a 5-minute waiting time is observed to ensure that the heart does not start beating again; after this, the organs are removed by the transplant team. One drawback of traditional DCD is that the organs are damaged during the 5-minute waiting time due to the absence of blood circulation. NRP uses ECMO to restore blood flow to the thoracic organs after a patient has been pronounced dead, often resulting in the heart restarting with the goal of improved organ quality. While the thoracic organs receive important blood flow, the major arteries to the brain are tied off to avoid blood being provided to the brain. NRP raises many ethical questions which will be discussed during this Ethics Grand Rounds.

Learning Objectives:

  • Introduce key ethical challenges that arise during normothermic regional perfusion
  • Explain legal frameworks that are relevant to implementation of normothermic regional perfusion
  • Discuss areas of consensus and divergence that will influence whether and how normothermic regional perfusion can advance, with particular attention to the pediatric context
  • Brendan Parent, JD

This seminar was delivered as an Ethics Grand Rounds Lecture at Children’s Hospital of Philadelphia, on September 4, 2024.

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13 Myths About Organ Donation, Debunked

Think you’re too old, too unhealthy, or too alive to donate your organs? Think again.

research about organ donation

More than 100,000 people in the U.S. are currently on the national waiting list for an organ transplant. Sadly, the chronic shortage of donated organs means that over 6000 patients every year die while waiting for one. The need for donors continues to rise due to an aging population, higher rates of obesity-related organ failure, and other factors.

To complicate matters further, false beliefs about organ donation persist. Let’s debunk 13 of the most common myths .

Myth: Everyone who signs up to be an organ donor will end up being one.

Myth: you can donate organs only when you’re dead., myth: your organs could be harvested prematurely., myth: only family members can donate and receive kidneys., myth: doctors don’t work as hard to save the lives of organ donors., myth: you have to be young to donate organs. , myth: there’s an age limit for receiving donated organs., myth: you have to be in perfect health to be an organ donor., myth: organ donors can’t have open-casket funerals., myth: your family will be charged for your organ donation., myth: rich and powerful people are prioritized as recipients., myth: many religions prohibit organ donation., myth: you can become an organ donor only when you get a driver’s license..

In the U.S., 170 million people have registered as donors, which seems like a lot—but few will be able to actually donate. The United Network for Organ Sharing (UNOS) coordinates the transfer of donated organs to recipients, and successful transplants depend on many factors. One variable is the time that organs remain viable once they’re procured. The windows are short: four hours for a heart, 24 for a liver, and 36 for a kidney . Only 0.3 percent of people die in a setting that allows for timely donation.

Not true: Living donors can choose to part with a single kidney ; a piece of their liver ; a small section of a lung , pancreas , or intestine ; and certain tissues. These organs either regenerate themselves or continue functioning despite missing the donated portions. 

Hearts , both lungs, both kidneys, the entire liver or pancreas, and even hands and faces can be donated only by a deceased person. But how sure are the physicians that donors are really dead, and not just in a coma?

Since the first successful organ transplant in 1954, the “ dead donor rule ” (DDR) has been the cornerstone of the practice. This ethic states that a donor must be dead before procurement of organs starts and that donation itself won’t cause the death of the donor. Doctors make a determination that a person is dead with no chance of resuscitation before turning the body over to an organ procurement organization (OPO), a nonprofit that handles the removal of the organs.

In cases of brain death—meaning a person is biologically alive with the help of medical devices, with no hope of recovery or regaining consciousness—multiple doctors have to sign off to make that declaration. In those situations, patients’ advance directives determine when doctors cease medical intervention. 

A doctor performs a kidney ultrasound on a patient.

Kidneys are, by far, the most needed organs: 86 percent of people on the national waiting list need one. It’s true that recipients’ bodies are less likely to reject kidneys donated by relatives, but a blood relationship is not a requirement for giving or receiving one. Many factors, including blood type and the health of the organ itself, are considered prior to transplant.

There is zero evidence doctors and nurses treat the 170 registered million organ donors differently than the other half of the U.S. population. Medical professionals are bound by the Hippocratic oath to do no harm, and could open themselves to career-ending malpractice lawsuits and professional discipline if they simply let a patient die. 

And there’s no incentive for an attending clinician to neglect patients for the purpose of organ donation. Most have no direct relationship to the OPO that manages the donation.

Just like with donating blood , there’s no age limit for donating organs. According to the U.S. Health Resources and Services Administration, 40 percent of donated organs come from people over 50. The agency highlights one donor named Carleton who died at age 92 and whose liver saved a 69-year-old woman’s life—but he isn’t the record holder. 

In June 2024, 98-year-old World War II and Korean War veteran Orville Allen passed away after a fall; his family was surprised to learn that he was eligible to donate his liver. The organ went to a 72-year-old woman. “It turned it from being such a sad loss of our dad to having this little ray of joy because he was doing what he’d done all his life,” Allen’s daughter, Linda Mitchelle, told the AP . “He was giving one more gift.”

The prior record holder was believed to be West Virginia resident Cecil Lockhart, 95, who donated his liver in 2021.

There’s no official cutoff age for receiving a donated organ, but each transplant program sets its own criteria. Some may accept patients up to a certain age and other programs may have no age requirements. About two-thirds of donated organs are transplanted in people 50 or older; about a quarter of recipients are 65 or older.

This gent is probably eligible to be an organ donor.

Only a few specific factors would entirely bar someone from donating. A person with an active, spreading cancer or infection, such as viral meningitis or tuberculosis , wouldn’t be eligible. But even if a person had a chronic disease, they could still be able to donate unaffected organs: a deceased person who had diabetes , for example, probably wouldn’t donate their pancreas, but could still provide their heart or lungs. And many people in less-than-perfect health can still donate skin, corneas, and other tissues. 

OPOs are sensitive to families who want to have a viewing for their loved one. In the hours after a donor’s death, the organs are removed and incisions are closed. The body is turned over to their family 24 to 36 hours later to be prepared and clothed for an open-casket service according to the family’s wishes.

Neither the donor nor their family pays to donate organs. Given the ongoing shortage, hospitals would be foolish to make it harder for willing people and their families to sign up. The recipient or their insurance company is usually responsible for any costs related to the procedure.

In the U.S., most organs and recipients are matched through the United Network for Organ Sharing. The organization determines the best-matched recipient by evaluating factors like medical urgency, the recipient’s time spent on the waiting list, and the likelihood that the transplant will work. Social status is never a consideration.

Organ donation is just fine with Amish people.

No major religious tradition in the U.S., from Amish to Unitarian Universalist, prohibits organ donation by its followers. On the contrary, the largest sects of most major religions—including Catholic , Baptist, African Methodist Episcopal, Lutheran, and more—endorse donation as an act of charity.

Sure, it’s convenient to sign up as a donor at the DMV, but that is not the only way to do it. The Health Resources and Services Administration makes it easy with a portal on its website that will take you to your state’s donor registry. There, you can sign up or update your registration details online.

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Sitaram Yechury donates his body to AIIMS. When is the body returned after donation?

Sitaram yechury body donation: cpi(m) general secretary sitaram yechury has passed away, and the family has donated his mortal remains to aiims..

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research about organ donation

  • Sitaram Yechury’s body was donated to AIIMS for research, no cremation.
  • Donated bodies are returned after a few months, though changes occur.
  • Organs like heart, liver need removal within specific time frames after death.

CPI(M) leader Sitaram Yechury took his last breath on Thursday, September 12, 2024. Yechury was 72 years old and had been unwell for a long time. After his passing, Yechury's family decided to donate his body to AIIMS. Now, there will be no cremation, and the body will be used for research or educational purposes.

IS THE BODY NOT RETURNED?

First and foremost, it’s important to note that when a person’s body is donated to a hospital after death, it is returned to the family after a designated period.

The donated body is primarily used for educational purposes, enabling medical students to enhance their learning and skills.

Dr Manish Kumar spoke with Aajtak.in to clear all doubts about this, he said that the body is fixed using formalin. This means that the body undergoes a process that prevents the growth of any bacteria or germs. As a result, the body becomes like wood and does not decay.

He added that, after this, it is used for research purposes.

"Often, the body is utilised by first-year students who study different parts of the body. In this way, students take turns studying different parts," Dr Manish Kumar told Aajtak.in

The doctor explained, "However, after repeated exposure to air, a point comes when the body needs to be disposed of. In such cases, the body is returned to the family. It is not that the body is in poor condition when returned to the family. Rather, the body's structure changes, and it may be difficult to recognise the face. Generally, the body is returned to the family after a few months, as research on the body is typically conducted over a few months."

WHAT ARE THE RULES FOR BODY DONATION?

There are two ways to donate organs. One way is when individuals make a decision to donate before death, and after their death, the donation can be carried out with the family's consent.

If someone decides to donate while still alive, they can do so by filling out a form, which must be signed by two witnesses, one of whom must be a close relative. If no prior decision has been made, family members can also donate organs.

There is no significant cost involved, as hospitals or other organisations handle the process.

A person can choose to donate their organs, which are removed within a certain time frame after death, and the body is then handed over.

The time frame for each organ varies, and it is essential to remove the organ within that specified period. After this, the deceased's body is respectfully returned to the family.

WHICH ORGANS CAN BE DONATED?

Note that organs such as the heart, liver, kidneys, intestines, and lungs can only be donated in the case of brain death. However, corneas, heart valves, skin, and bones can only be donated in cases of natural death.

The procedures for tissue and organ donation are different. Lungs must be transplanted within 4 to 6 hours, the heart within 4 hours, the liver within 24 hours, kidneys within 72 hours, corneas within 14 days, bones within 5 years, skin within 5 years, and heart valves within 10 years. Published By: vaishnavi parashar Published On: Sep 13, 2024 READ | Speed slim diet vs traditional diets: A smarter approach to weight loss

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Tissue and organ donation.

Erind Muco ; Siva Naga S. Yarrarapu ; Hani Douedi ; Bracken Burns .

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Last Update: July 24, 2023 .

  • Continuing Education Activity

Tissue/organ donation is a complex and multidisciplinary process that begins with the meticulous procedure of determining death. This is followed by a specific set of inclusion/exclusion criteria that determine if organs can/cannot be procured from the donor. Ultimately, this leads to a multi-specialty surgery of procurement and transplantation. This activity outlines the evaluation and management of the donation process and highlights the role of the healthcare team in managing patients post-transplant.

  • Discuss interprofessional team strategies for improving care coordination and communication to advance organ donation and improve outcomes.
  • Summarize the barriers to tissue and organ donation.
  • Review the role of the healthcare team in tissue and organ donation.
  • Introduction

Tissues and organs are procurable from a living or deceased donor. Live donation involves either kidney, partial liver, or lung. The Institute of Medicine - American National Academy of Sciences clarified that a clinician could declare death using either neurologic criteria or circulatory criteria.  [1]  Following such determination, select organ(s) may be procured from the donor and then transplanted into a host.

Sadly, every day, patients suffer morbidity or mortality due to a lack of availability of tissue or an organ transplant.  [2] [3] [4] [2]  Health professionals are often in a position to encourage families to make the difficult decision at the time of death of their loved one, to give the gift of life to another human, by donating tissues or organs.  [5]

There are numerous challenges to organ donation, especially at a time when the family is grieving. Further, few patients have discussed the issue with their families, as such, they may not be able to anticipate the desires of their passing family member.

Health providers must have the education to address family misconceptions and assist the team in donation recovery, preservation, and placement of tissues and organs from deceased and living donors. By educating practitioners about tissue and organ donation, more families will make the decision to donate and decrease the number of patients that pass due to lack of tissues or organs.

Tissue and organ donation is of tremendous benefit to living patients as it functions to help the living. One individual's tissue and organ donation can impact numerous lives. While the majority of the public is in favor of organ donation, individuals often fail to include this decision in their living wills. Further, while many states allow drivers to register as organ donors on their driver licenses, few complete the required form. The consequence is a tremendous tissue and organ shortage leading to long wait times on transplant lists that in many instances result in premature deaths of viable patients that could have lived longer lives with the benefit of tissue and organ transplants.

  • Issues of Concern

Care during the organ donation process is multi-faceted and begins with the optimization of the donor following the determination of death using neurologic or circulatory criteria. This process means optimizing cardiopulmonary status via hemodynamic and ventilatory support. Expeditious organ/tissue procurement is the recommendation because, soon after death, inflammatory mediators begin to invade solid organs leading to increased organ immunogenicity.  [6]  While being cautious, from procurement to placement, every step must be done quickly and efficiently to assure the best outcomes.

Healthcare Provider and Team Role

Some health professionals have cultural, ethical, or religious beliefs that preclude their willingness to participate in the donation or receipt of tissues or organs. It is important to respect individuals' personal belief systems; however, personal beliefs should not interfere with the patient's right to self-determination. The primary commitment is to the patient and family. However, certain healthcare professionals may not wish to become involved in the organ and tissue donation process or to participate in campaigns to increase donations in their community and/or facility. This decision should be respected as a personal choice. For those that want to help, the role can be as simple as helping patients make the decision to donate prior to death.

Tissue and organ removal teams' main concerns revolve around permission, removal, and rapid transfer of organs and tissues.  [1] [7]  Challenges often involve failure to identify eligible donors, death not officially declared within a specific timeframe, or absence of an appropriate recipient. 

Tissue and organ placement teams made concerns include the suitability of the tissue or organ, maintaining the viability of the tissue and organ, and rapid transplantation. Permission issues may stem from the denial of organ donation from a potential donor, donor’s family, or other judicial officers.  [8] [9]

Health professional's responsibilities in tissue and organ donation vary with their role. Some providers work with the families of donors, others with the families of recipients. Some may be responsible for performing surgery and managing the patient. In addition, there is often an administrative team that works with organ procurement organizations. While health professionals should help educate patients on the benefits of organ donation, specific responsibilities of team members include:

  • Organ donation public and provider education  [10]
  • Organ donor identification  [11]
  • Coordination of tissue and organ donation
  • Support of donor and recipient families which includes understanding cultural, psychological, and religious issues
  • Administration management and interaction with organ procurement organizations

Individuals that would like to become involved in tissue and organ donation can do the following steps: 

  • Education by becoming familiar and involved with local organ procurement programs
  • Complete continuing education in regards to organ donation procurement and placement and provide staff and colleague education
  • Develop the skills to work with the organ procurement coordinator at your institution

Providers should be aware of the following in regards to tissue and organ procurement and placement:

  • The first priority is to save the patients life, not harvest tissue or organs; organ donation is not permission to give up or withdraw care
  • Most religions support tissue and organ donation
  • There is no cost to the family for tissue or organ donation
  • Matching of the donor to the recipient usually involves a computerized matching system that considers: recipients condition, blood type, wait time, and location; the financial situation of the recipient is not a factor

Tissue and Organ Selection and Processing

Members of the healthcare team should have a clear understanding of the issues involved in tissue and organ donation as this will improve outcomes. Organ donation starts with confirmation of clinical brain death, usually by a neurosurgeon or neurologist.  It should be remembered that a coma is not brain death. In general, this is based on accepted medical standards:

  • Irreversible cessation of brain functions, including the brain stem  [12] [13] [14]
  • Irreversible cessation of circulatory and respiratory functions

Other considerations for death may include family or patient has signed an advanced directive to withdraw life support.

When a prospective donor is near death or has died, the organ procurement coordinator should be notified and informed of the patient's identification number, name, age, past medical history, cause or anticipated cause of death, family contact information, and any other pertinent information. the organ procurement coordinator determines if the patient is a potential donor and should arrive at the hospital within 90 minutes if the patient is a suitable candidate. All deceased patients may be considered for organ donation. The coordinator, if the patient is acceptable, will then speak with the family and gain further information.

If the evaluation rules in donation, the organ procurement coordinator will complete the following:

  • Arrange for additional tests
  • Arrange for social work and clergy support
  • Search the state registry to determine if prior consent has been given on the patient's driver's license
  • If possible, the living will of the patient will be located and evaluated. If there is no predetermined consent, the coordinator will contact the spouse, certified domestic partner, adult child, parent, adult sibling, legal guardian, or any other person authorized to make decisions.
  • Until a determination of donation is finalized, the coordinator will assure the patient is maintained on artificial life support.
  • The coordinator procurement coordinator contacts the medical examiner and Organ Procurement and national database Transplantation Network (OPTN) to initiate a search for potential matching recipients.
  • Donor is matched with the recipient based on tissue type, blood type, weight, height, wait time, severity of illness, and distance. The system generates a matching recipient list by tissue/organ type for contact use by the coordinator.
  • The first match for each tissue/organ becomes the prime transplant candidate for contact.
  • The transplant surgeon makes the final decision based on recipient health, suitability of tissue or organ, and the availability of the recipient with local patients receiving preference.
  • The receiving coordinator conducts consent and matching in a manner similar to organ donation.
  • The donor body is placed in the morgue with saline-soaked gauze covering the eyes and is not released to the funeral home until all potential harvesting is completed.
  • Recovery of tissue is performed by recovery surgeons either in the same hospital or at another location.

Tissue and Organ Recovery and Transplantation

Tissues that may be recovered and transplanted include blood vessels, bone, cartilage, corneas, heart valves, skin, and tendons. Organs that may be recovered and transplanted include the heart, intestine, kidney, liver, lung, and pancreas. Steps in the process include:

  • Appropriate consents from the family
  • Rapid scheduling of the organ recovery surgical team by the organ procurement coordinator
  • Preparation of an ice-cold preservation solution used to flush each organ removed
  • Surgical removal using standard surgical incisions in a sterile operative environment
  • Organs removed first and placed in sterile containers and packed icy slush which cools but does not freeze (kidneys are placed on a perfusion machine the pumps preservation fluid through the organ during transport)
  • Following organ removal, tissues are recovered
  • Any incisions made are surgically closed
  • Due to rapid loss of viability of organs and tissues, rapid ground or air transport is arranged by the organ procurement coordinator
  • The organ procurement coordinator contacts the funeral director for removal of the body
  • The recipient transplant team of the donor organ or tissue, as well as the recipient, is made ready to receive and complete the transplant

Non-living Donors

Following donor optimization, standard organ removal in the operating room is as follows: heart and lungs first, followed by hepatectomy, pancreatectomy, and bilateral nephrectomies.  [15]  Subsequent organ cooling to 4 degrees C considerably reduces warm ischemia damage to organs; however, it does not completely arrest cellular processes. Therefore, a thorough organ washout technique, along with selecting appropriate preservation solutions, is critical to organ viability leading to decreased immune reaction and formation of oxygen-free radicals upon reperfusion.  [16]

Living Donors

There are two types of living tissue and organ donation.

  • Directed donation - donor names a specific tissue or organ recipient
  • Non-directed donation - donor does not name a specific tissue or organ recipient

While living donation reduces transplant wait times, it has its own set of challenges. The kidney and liver are commonly living donor donations. Less commonly intestines, lung, or pancreas segments are transplanted. 

Considerations should be given to cost and potential complications. Living donation requires informed consent due to potential complications. Some are specific to the organ donated. Complications include:

  • Abdominal internal bleeding
  • Allergic reactions to anesthesia
  • Blood clots
  • Organ dysfunction
  • Wound infection

Kidney 

  • Bowel obstruction
  • Damaged kidney function require dialysis or transplantation
  • Hypertension
  • Bile leakage
  • Damaged liver function requiring medical therapy or transplantation

Barriers and Misunderstands Concerning Tissue and Organ Donation

Health professionals should be educated in tissue and organ donation and be prepared to provide families with accurate information while dispelling misunderstandings.  [17]

There are numerous barriers to organ donation and recovery. Health professionals and institutions should provide an experienced team to make the process of tissue and organ donation as efficient as possible while minimizing the emotional impact on donor families. The team often consists of a nurse, a social worker or pastor, and a clinical provider. If the institution provides positive moral and social support, the donation for the family usually proves to be a rewarding experience.

There is a potential cost of living donation. While insurance may cover the surgery and follow-up care, any long-term complications may not necessarily be covered. Uncovered costs include lost wages, particularly if there are long-term complications of surgery.  [18] [19] [18]

Misunderstandings

Many clinicians and families may have misunderstandings in regards to tissue and organ donation. Examples include a belief that there is an age limit, when in fact there is no age limit on organ donation. Others are concerned it may be a religious violation when in reality few religions prohibit tissue and organ donation. Others are concerned that an open casket may not be possible when this typically is not an issue. Some believe that the health of the donor may prohibit donation, in reality, few medical conditions affect tissue or organ donation. For some donor families, they believe there is a cost associated when no fees are levied. Some even believe the organs are sold, in reality, organs are matched via a computer database which does not consider the financial status of potential recipients. Patients may not agree to donate because they believe health professionals will be less apt to save them in an emergency, when in fact saving their life is the top priority, and tissue and organ donation is not considered.  [17]

  • Clinical Significance

Following successful transplantation into a host, the mainstay of long-term care is a combination of lifelong close monitoring and appropriate immunosuppression.  [20] [21] [22]  Patients must come to realize that there will never come a time in their lives when close monitoring is no longer necessary. Additionally, clinicians must understand current standard practices in caring for these patients as well as accept upcoming innovations such as monitoring patients for donor-specific antibodies as a marker of immunologic risk.  [23] [24]  Furthermore, non-invasive markers found in blood and urine are now beginning to replace biopsies in assessing for immunologic injury.  [25] [26]

Organ donation is vital to patients, yet there is a large deficiency of those willing to donate coupled with a long list of individuals needing tissue and organ donation. By becoming educated regarding the issues and concerns, hopefully, more patients will successfully be encouraged to give the gift of life.

  • Enhancing Healthcare Team Outcomes

For a successful tissue/organ transplantation to occur, it requires an extraordinary amount of teamwork from all aspects of the healthcare system. Preoperatively, nurses are required to provide close monitoring of hemodynamic parameters outlined in current standard practices and offer interventions as necessary. Intraoperatively, it is known that various specialties of medicine participate in the operation, requiring extensive and clear communication for surgical success. Finally, allied health professionals play a critical role in maximizing the organ recipient’s return to normal function postoperatively, leading to a happy and healthy life.

  • Nursing, Allied Health, and Interprofessional Team Interventions

Communication is a useful tool that is imperative to positive patient outcomes as it relates to organ transplantation. Research participants recognize that nurses are at the center of communication, seeing as they spend the most time at the bedside amongst all healthcare providers.  [27]  As such, they become the most powerful means of communicating compliance and good practices to patients during their life-long journey of close monitoring, which involves close screening of infections, organ rejection, and malignancies. 

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Disclosure: Erind Muco declares no relevant financial relationships with ineligible companies.

Disclosure: Siva Naga Yarrarapu declares no relevant financial relationships with ineligible companies.

Disclosure: Hani Douedi declares no relevant financial relationships with ineligible companies.

Disclosure: Bracken Burns declares no relevant financial relationships with ineligible companies.

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ), which permits others to distribute the work, provided that the article is not altered or used commercially. You are not required to obtain permission to distribute this article, provided that you credit the author and journal.

  • Cite this Page Muco E, Yarrarapu SNS, Douedi H, et al. Tissue and Organ Donation. [Updated 2023 Jul 24]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

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  • Differences in the procurement of organs and tissues by health care professionals. [Clin Transplant. 1994] Differences in the procurement of organs and tissues by health care professionals. Siminoff LA, Arnold R, Miller DS. Clin Transplant. 1994 Oct; 8(5):460-5.
  • Deceased-Donor Organ Transplantation in India: Current Status, Challenges, and Solutions. [Exp Clin Transplant. 2020] Deceased-Donor Organ Transplantation in India: Current Status, Challenges, and Solutions. Kute V, Ramesh V, Shroff S, Guleria S, Prakash J. Exp Clin Transplant. 2020 Jul; 18(Suppl 2):31-42.
  • Organ and tissue donation: are minorities willing to donate? [Ann Transplant. 1998] Organ and tissue donation: are minorities willing to donate? Daniels DE, Smith K, Parks-Thomas T, Gibbs D, Robinson J. Ann Transplant. 1998; 3(2):22-4.
  • Review Obstacles to the deceased donor transplantation in Pakistan. [BMJ Open Gastroenterol. 2023] Review Obstacles to the deceased donor transplantation in Pakistan. Ullah K, Dogar AW, Ochani S, Shoaib A, Shah HH, Ur Rehman ME. BMJ Open Gastroenterol. 2023 May; 10(1).
  • Review Successful strategies to increase organ donation: the Gift of Life Donor Program Philadelphia model. [Indian J Thorac Cardiovasc Sur...] Review Successful strategies to increase organ donation: the Gift of Life Donor Program Philadelphia model. Timar J, Bleil M, Daly T, Koomar S, Hasz R, Nathan H. Indian J Thorac Cardiovasc Surg. 2021 Sep; 37(Suppl 3):380-394. Epub 2021 Sep 1.

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