We are developing the Neurological Disease Ontology (ND) to provide a framework to enable representation of aspects of neurological diseases that are relevant to their treatment and study. ND is a representational tool that addresses the need for unambiguous annotation, storage, and retrieval of data associated with the treatment and study of neurological diseases. ND is being developed in compliance with the Open Biomedical Ontology Foundry principles and builds upon the paradigm established by the Ontology for General Medical Science (...) (OGMS) for the representation of entities in the domain of disease and medical practice. Initial applications of ND will include the annotation and analysis of large data sets and patient records for Alzheimer’s disease, multiple sclerosis, and stroke. (shrink)

This chapter explores what we actually mean by data donation after death, and what different types of data donation metadata are involved in the process. It then provides an analysis of the ethical ramifications of each of these different types of data, outlines the concepts of data advance directives and data donation guardians as one way of dealing with these issues, and considers alternative governance mechanisms. The degree of control given to the (...) first data donors may need to be high in order to maintain trust, but over time attitudes may evolve towards everyone giving “big consent” to data donation. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous (...) medical data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, in a way similar to how they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute. Ten arguments are provided to support the need to foster posthumous medical data donation. (...) Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to ask for informed consent is rejected, and it instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks providing five foundational principles for ethical medical data donation; and suggesting a draft for such a code. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. -/- Today, it is easy (...) to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. -/- Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to (...) donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

As we navigate physical (e.g., supermarket) and digital (e.g., social media) systems, we generate personal data about our behavior. Researchers and designers increasingly rely on this data and appeal to several approaches to collect it. One of these is data donation, which encourages people to voluntarily transfer their (personal) data collected by external parties to a specific cause. One of the central pillars of data donation is informed consent, meaning people should be _adequately (...) informed_ about what and how their data will be used. However, can we be _adequately informed_ when it comes to donating our data when many times we don’t even know it is being collected and, even more so, what exactly is being collected? In this paper, we investigate how to foster (personal) data literacy and increase donors’ understanding of their data. We introduce a Research through Design approach where we define a data donation journey in the context of speech records, data collected by Google Assistant. Based on the data donation experiences of 22 donors, we propose a data donation framework that understands and approaches data donation as an encompassing process with mutual benefit for donors and researchers. Our framework supports a donation process that dynamically and iteratively engages donors in exploring and understanding their data and invites them to (re)evaluate and (re)assess their participation. Through this process, donors increase their data literacy and are empowered to give meaningfully informed consent. (shrink)

BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based (...) medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law. (shrink)

Background Since 2010 the People’s Republic of China has been engaged in an effort to reform its system of organ transplantation by developing a voluntary organ donation and allocation infrastructure. This has required a shift in the procurement of organs sourced from China’s prison and security apparatus to hospital-based voluntary donors declared dead by neurological and/or circulatory criteria. Chinese officials announced that from January 1, 2015, hospital-based donors would be the sole source of organs. This paper examines the availability, (...) transparency, integrity, and consistency of China’s official transplant data. Methods Forensic statistical methods were used to examine key deceased organ donation datasets from 2010 to 2018. Two central-level datasets — published by the China Organ Transplant Response System and the Red Cross Society of China — are tested for evidence of manipulation, including conformance to simple mathematical formulae, arbitrary internal ratios, the presence of anomalous data artefacts, and cross-consistency. Provincial-level data in five regions are tested for coherence, consistency, and plausibility, and individual hospital data in those provinces are examined for consistency with provincial-level data. Results COTRS data conforms almost precisely to a mathematical formula while Central Red Cross data mirrors it, albeit imperfectly. The analysis of both datasets suggests human-directed data manufacture and manipulation. Contradictory, implausible, or anomalous data artefacts were found in five provincial datasets, suggesting that these data may have been manipulated to enforce conformity with central quotas. A number of the distinctive features of China’s current organ procurement and allocation system are discussed, including apparent misclassification of nonvoluntary donors as voluntary. Conclusion A variety of evidence points to what the authors believe can only be plausibly explained by systematic falsification and manipulation of official organ transplant datasets in China. Some apparently nonvoluntary donors also appear to be misclassified as voluntary. This takes place alongside genuine voluntary organ transplant activity, which is often incentivized by large cash payments. These findings are relevant for international interactions with China’s organ transplantation system. (shrink)

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors’ and non-donors’ rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in (...) evaluations made by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to “give something back” to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF–stem cell interface. (shrink)

Because the number of organs available for transplantation does not meet the needs of potential recipients, some have proposed that a potentially effective way to increase registration is to offer a self‐benefit incentive that grants a 'preferred status' or some degree of prioritization to those who register as potential donors, in case they might need organs. This proposal has elicited an ethical debate on the appropriateness of such a benefit in the context of a life‐saving medical procedure. In this paper (...) we review arguments and ethical concerns raised by scholars, and studies of views of members of the public regarding the prioritization incentive system. We also report on our study of the views of those involved in organ transplant and of other medical professionals in Israel, as over half a decade ago Israel implemented a prioritization incentive system. Bioethicists propose that key stakeholders' views can provide additional arguments and perspectives on controversial issues. Proponents justify the prioritization incentive drawing mainly on arguments related to its potential effectiveness, reciprocity and fairness. Opponents point to the fact that registering is not binding and not an actual donation, and raise concerns regarding equity, autonomy and gaming the system. Ethical concerns raised by the practitioners in the study were examined in light of scholars' arguments and actual registration and donation data. Practitioners involved in transplantation raised ethical concerns corresponding to those raised by scholars as well as additional concerns. They also challenged proponents' assumptions regarding the utility of the incentive system from their own experience and argued that proponents obscure the meaning of reciprocity. (shrink)

PurposeThis paper presents an ethnographic study of gamete donation in Latvia. The aim of the study is to describe and analyse the practice of applying responsibility in gamete donation cases from the perspective of anthropology and ethics.MethodsWe performed thirty semi-structured interviews with laypeople and five focus group discussions among adolescents. The third source of data was media analysis: 57 articles discussing assisted reproduction in Latvian electronic popular media as well as internet discussions among ART participants. The (...) class='Hi'>data were processed using Atlas.ti.ResultsThe data showed that the situation of ART responsibility is formulated through defining one’s relationship to the gametes, to the nation and the relationship between parent and child.ConclusionsThe practice of gamete donation does not create new responsibilities but uses already existing relations in a situation marked by new knowledge. Relationships among ART users, donors and physicians often result in an imbalance of responsibility sharing. The framework of relational ethics is one possible way to change the practice of balancing and sharing responsibility in ART applications. (shrink)

We conducted an intertemporal online experiment to examine the contagion of others’ positive and negative donation behaviors. We collected two sets of data during and after the peak of the COVID-19 pandemic in China. The participants donated to the charitable fund, “Against COVID-19, The China Charity Federation Is on the Move.” We further investigated the mediating effect of social anxiety on the link between the contagion of donation behaviors and the changes in the COVID-19 situation. A total (...) of 1022 participants participated in the intertemporal online experiment and were considered in the statistical analyses. Our findings were as follows. First, the donation behaviors of others significantly changed these participants’ initial donation decisions, with increased or decreased donation amounts being associated with a positive or negative donation behavior, respectively. Others’ positive donation behavior was more likely to nudge these participants into changing their initial decisions than negative donation behavior during the peak of the pandemic. However, such difference disappeared after the peak because the contagion of positive donation behavior significantly decreased along with the abatement of the pandemic. Second, the participants’ social anxiety decreased along with the abatement of the pandemic, and social anxiety completely mediated the relationship between the pandemic abatement and the decrease in the contagion of positive donation behaviors. These findings advance our understanding of the motivations and influence mechanism of individuals’ donation decisions in the current pandemic situation and help make informed policy making decisions. (shrink)

BackgroundOrgan donation following brain death has become an important way of supplying organs for transplantation in many countries. This practice is less common in Iran for different reasons. Therefore, this study aims to explore the obstacles to organ donation following brain death in Iran.MethodsThis qualitative research was conducted following the conventional content analysis method. The study population consisted of individuals with a history of brain death among their blood relatives who refused to donate the organs. Snowball sampling was (...) employed to select the participants. In-depth semi-structured interviews were conducted for data gathering. Theoretical saturation was achieved through 20 interviews. Data analysis was done following the steps proposed by Graneheim and Lundman. Lincoln and Guba’s criteria were used to ensure data rigor and transferability of the study.ResultsData analyses revealed 185 codes, 23 categories, and seven themes including, poor knowledge about brain death and organ transplantation from a dead body, cultural beliefs, religious beliefs, deficiencies of requesting process, fear and concerns, inability to make a decision, and social learning.ConclusionThere were several factors in families’ reluctance to donate organs of a brain-dead patient. Through improving knowledge and changing cultural beliefs in society, it is possible to take large steps towards promoting organ donation from brain-dead patients. (shrink)

Purpose This paper presents an ethnographic study of gamete donation in Latvia. The aim of the study is to describe and analyse the practice of applying responsibility in gamete donation cases from the perspective of anthropology and ethics. Methods We performed thirty semi-structured interviews with laypeople and five focus group discussions among adolescents. The third source of data was media analysis: 57 articles discussing assisted reproduction in Latvian electronic popular media as well as internet discussions among ART (...) participants. The data were processed using Atlas.ti. Results The data showed that the situation of ART responsibility is formulated through defining one’s relationship to the gametes, to the nation and the relationship between parent and child. Conclusions The practice of gamete donation does not create new responsibilities but uses already existing relations in a situation marked by new knowledge. Relationships among ART users, donors and physicians often result in an imbalance of responsibility sharing. The framework of relational ethics is one possible way to change the practice of balancing and sharing responsibility in ART applications. (shrink)

While 90 percent of participants in a 2005 Gallup poll indicated that they would donate an organ if asked, only 40 percent of Americans have registered to do so, according to 2012 data from Donate Life America; likely even fewer have shared their donation wishes with loved ones. Undoubtedly, the single biggest reason for the discrepancy between the number of potential transplants and the number actually performed is our failure to talk with loved ones about our wishes regarding (...) organ donation. Although many resources already exist to hold these conversations, we can do more, and the emergence of social media provides an intriguing new opportunity. Two years ago, Organize.org set out to create the first nationwide organ donation registry in the United States. (shrink)

The article analyses practices, perceptions and political dramatizations of bone marrow donation in Cyprus. Based on empirical data from an ethnographic study on practices of organ and bone marrow transplantation in postcolonial Cyprus, forms of oppositional biopolitics are analysed that are not bound by the modern, étatist regime of governing populations but capitalize on new developments in biomedicine, on new political movements, as well as on transformations in the political sphere. These reconfigurations are interpreted as instances of an (...) emerging bio-subpolitics that transcends national borders and produces new complexities, interrelations, associations and social forms that come into being alongside biomedicine. At the same time, these developments co-produce cosmopolitan citizens and new subjectivities, transcending nationally bound regimes of political deliberation and identification. These forms of biopolitics mobilize local historical experiences and take advantage of affordances provided by biomedical platforms operating on a global scale that make available an opportunity structure for a cosmopolitan bio-subpolitics. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use (...) of genetic and health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

Perceived trust is a key factor affecting the behavior to donate online. In order to further explore the factors and influencing mechanisms that affect the success of medical crowdfunding projects, this paper, combined with the Stimulus-Organism-Response theory, introduces the mediating variable of social presence and perceived differences in trust, and constructs a model of online users’ donation behavior to medical crowdfunding projects. We collected 437 valid samples through a questionnaire survey, and processed the data with SPSS and Amos (...) software to test and analyze the theoretical model. The research results showed that project description and user participation have a significant positive effect on social presence; project transparency and patient identity have a significant negative effect on perceived differences in trust; social presence has a positive effect on donation behavior, while the perceived difference in trust has a negative effect; social presence and perceived differences in trust play a mediating role respectively; there is no significant effect of patient status on social presence. This study further expands the application of social presence and perceived differences in trust in medical crowdfunding, and provides a theoretical basis for the success of medical crowdfunding projects. (shrink)

We systematically examined the content of the websites of 46 agencies that buy and sell human eggs to understand how they market themselves to both donors and recipients. We found that these websites use marketing techniques that obscure the realities of egg donation, presenting egg donation as a mutually beneficial and fulfilling experience. Sites emphasize egg donors' emotional fulfillment and address recipients' anxieties by stressing the ability to find the perfect “fit” or “match”, suiting recipients’“preferences”/“desires”, and even designing/customizing (...) a child. Agencies attempt to create a sense of connection between the recipients and donors by reporting donors' personal characteristics — e.g., interests/hobbies, traits, mood/temperament, and self-reported childhood behavior/memories. Sites present donors as caring/generous and smart/successful/beautiful. These data, the first to examine several key aspects of egg donation agency websites, reveal critical aspects of how these companies communicate to prospective donors and recipients, raising several ethical concerns. Websites frame information in ways that may bias consumers, making emotional appeals that may distract from appropriate risk/benefit assessments and obscure the ethical challenges of egg donation. These data highlight needs for improved practices, adherence to guidelines, and consideration of enhanced guidelines or policy. (shrink)

Public welfare fundraising has been used to collect donations for medical supplies and has played an important role in the fight against the COVID-19 pandemic. This paper studies online crowdfunding donations from the Alumni Association of Wuhan University to North American alumni; donation data are used to investigate how individuals' donation behavior is affected by the previous donation amount and information provided by the fundraising platform. First, our results show that one's donation amount is positively (...) affected by the previous donation amount. Second, the donor's positive sentiment in the message that he or she leaves, as measured by either natural language processing or a manual rating, can affect the subsequent anonymity and messages but not the subsequent donation amount. Third, anonymous donations are much smaller than non-anonymous donations. (shrink)

: This paper reviews current and suggested policies designed to increase organ donation in the United States and indicates the problems inherent to these approaches for increasing organ donation by African Americans. Data from a population-based study assessing attitudes and beliefs about organ donation among white and African-American respondents are presented and discussed. We pose the question of whether it is reasonable to maintain the existing system or whether we should institute a system that uses policies (...) based on the attitudes and beliefs of a minority group that is in greater need than the majority. In light of the discussion, we suggest that the current policies guiding the organ procurement system are not adequate to address existing concerns within the African-American community and that a different set of assumptions may be needed to drive organ procurement policy. (shrink)

End-of-life organ donation is controversial in Islam. The controversy stems from: scientifically flawed medical criteria of death determination; invasive perimortem procedures for preserving transplantable organs; and incomplete disclosure of information to consenting donors and families. Data from a survey of Muslims residing in Western countries have shown that the interpretation of religious scriptures and advice of faith leaders were major barriers to willingness for organ donation. Transplant advocates have proposed corrective interventions: reinterpreting religious scriptures, reeducating faith leaders, (...) and utilizing media campaigns to overcome religious barriers in Muslim communities. This proposal disregards the intensifying scientific, legal, and ethical controversies in Western societies about the medical criteria of death determination in donors. It would also violate the dignity and inviolability of human life which are pertinent values incorporated in the Islamic moral code. Reinterpreting religious scriptures to serve the utilitarian objectives of a controversial end-of-life practice, perceived to be socially desirable, transgresses the Islamic moral code. It may also have deleterious practical consequences, as donors can suffer harm before death. The negative normative consequences of utilitarian secular moral reasoning reset the Islamic moral code upholding the sanctity and dignity of human life. (shrink)

Kidney transplantation is the most efficacious and cost-effective treatment for end-stage renal disease. However, the treatment’s accessibility is limited by a chronic shortage of transplantable kidneys, resulting in the death of numerous patients worldwide as they wait for a kidney to become available. Despite the implementation of various measures the disparity between supply and needs continues to grow. This paper begins with a look at the current treatment options, including various sources of transplantable kidneys, for end-stage renal disease. We propose, (...) in accordance with others, the introduction of compensated kidney donation as a means of addressing the current shortage. We briefly outline some of the advantages of this proposal, and then turn to examine several of the ethical arguments usually marshaled against it in a bid to demonstrate that this proposal indeed passes the ethics test. Using available data of public opinions on compensated donation, we illustrate that public support for such a program would be adequate enough that we can realistically eliminate the transplant waiting list if compensation is introduced. We urge a pragmatic approach going forward; altruism in living kidney donation is important, but altruism only is an unsuccessful doctrine. (shrink)

Living organ donation has developed into an important therapeutic option in transplantation medicine. However, there are some medico-ethical problems that come along with the increasing reliance on this organ source. One of these concerns is based on the observation that many more women than men function as living organ donors. Whereas discrimination and differential access have been extensively discussed in the context of cadaveric transplantation and other areas of health care, the issue of gender imbalance in living organ (...) class='Hi'>donation has received less attention. This paper presents relevant data from the Eurotransplant and UNOS transplantation systems and discusses possible explanations for the documented gender discrepancies. The conclusion calls for are view of existing practice guidelines in order to secure effective protection of particularly vulnerable potential donors and an equitable donor-recipient-ratio in living organ donation. (shrink)

The relationship between students and higher education is seen to have become increasingly transactional. We approach the study of the student–HE relationship in a novel way, by focusing on students’ behaviour post-university, rather than on student narratives. Conceptually, the article builds on multidimensional views of student engagement and the differentiation between psychological transactional contracts – where students who achieve better academic results are more likely to donate – and relational contracts – where students donate more following engagement in social experiences. (...) Making use of longitudinal data on donation behaviour from over 50,000 alumni from an English university over two decades, we find that while students who get better degree outcomes are more likely to donate, the association between participation in social experiences and donations is much stronger. This questions prevalent transactional models of HE and underlines the limitations of purely consumerist views of the relation between students and higher education institutions, even in the marketized UK context. (shrink)

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. -/- Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and (...) class='Hi'>data collection were performed by two or more independent reviewers for each record. -/- Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. -/- Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation. (shrink)

Terminal kidney patients are faced with lower quality of life, restricted diets and higher morbidity and mortality rates while waiting for deceased donor kidney transplantation. Fortunately, living kidney donation has proven to be a better treatment alternative (e.g. in terms of waiting time and graft survival rates). We observed an inequality in the number of living kidney transplantations performed between the non-European and the European patients in our center. Such inequality has been also observed elsewhere in this field and (...) it has been suggested that this inequality relates to, among other things, attitude differences towards donation based on religious beliefs. In this qualitative research we investigated whether religion might indeed (partly) be the explanation of the inequalities in living donor kidney transplants (LDKT) among non-European patients. Fifty patients participated in focus group discussions and in-depth interviews. The interviews were conducted following the focus group method and analyzed in line with Grounded Theory. The qualitative data analyses were performed in Atlas.ti. We found that religion is not perceived as an obstacle to living donation and that religion actually promotes helping and saving the life of a person. Issues such as integrity of the body were not seen as barriers to LDKT. We observed also that there are still uncertainties and a lack of awareness about the position of religion regarding living organ donation within communities, confusion due to varying interpretations of Holy Scriptures and misconceptions regarding the process of donation. Faith leaders play an important educational role and their opinion is influential. This study has identified modifiable factors which may contribute to the ethnic disparity in our living donation program. We argue that we need to strive for more clarity and awareness regarding the stance of religion on the issue of living donation in the local community. Faith leaders could be key figures in increasing awareness and alleviating uncertainty regarding living donation and transplantation. (shrink)

BackgroundThe amount and value of researchers’ peer review work is critical for academia and journal publishing. However, this labor is under-recognized, its magnitude is unknown, and alternative ways of organizing peer review labor are rarely considered.MethodsUsing publicly available data, we provide an estimate of researchers’ time and the salary-based contribution to the journal peer review system.ResultsWe found that the total time reviewers globally worked on peer reviews was over 100 million hours in 2020, equivalent to over 15 thousand years. (...) The estimated monetary value of the time US-based reviewers spent on reviews was over 1.5 billion USD in 2020. For China-based reviewers, the estimate is over 600 million USD, and for UK-based, close to 400 million USD.ConclusionsBy design, our results are very likely to be under-estimates as they reflect only a portion of the total number of journals worldwide. The numbers highlight the enormous amount of work and time that researchers provide to the publication system, and the importance of considering alternative ways of structuring, and paying for, peer review. We foster this process by discussing some alternative models that aim to boost the benefits of peer review, thus improving its cost-benefit ratio. (shrink)

Objectives To increase postmortem organ donation rates, several countries are adopting an opt-out (presumed consent) policy, meaning that individuals are deemed donors unless they expressly refused so. Although opt-out countries tend to have higher donation rates, there is no conclusive evidence that this is caused by the policy itself. The main objective of this study is to better assess the direct impact of consent policy defaults per se on deceased organ recovery rates when considering the role of the (...) family in the decision-making process. This study does not take into account any indirect effects of defaults, such as potential psychological and behavioural effects on individuals and their relatives. -/- Design Based on previous work regarding consent policies, we created a conceptual model of the decision-making process for deceased organ recovery that included any scenario that could be directly influenced by opt-in or opt-out policies. We then applied this model to internationally published data of the consent process to determine how frequently policy defaults could apply. -/- Main outcome measures We measure the direct impact that opt-in and opt-out policies have per se on deceased organ recovery. -/- Results Our analysis shows that opt-in and opt-out have strictly identical outcomes in eight out of nine situations. They only differ when neither the deceased nor the family have expressed a preference and defaults therefore apply. The direct impact of consent policy defaults is typically circumscribed to a range of 0%–5% of all opportunities for organ recovery. Our study also shows that the intervention of the family improves organ retrieval under opt-in but hinders it under opt-out. -/- Conclusions This study may warn policy makers that, by emphasising the need to introduce presumed consent to increase organ recovery rates, they might be overestimating the influence of the default and underestimating the power granted to families. (shrink)

I aim to understand how the act of becoming an organ donor impacts whether it is permissible for a family veto to override an individual’s wish to donate. I argue that a Consent Model does not capture the right understanding of donor autonomy. I then assess a Gift Model and a Promise Model, arguing that both fail to capture important data about the ability to revoke one’s donor status. I then propose a Promise Acceptance Model, which construes becoming an (...) organ donor as accepting a promise the state makes to you to use your organs. This model, which implies that family vetoes are impermissible, captures the data other models struggle to accommodate. (shrink)

Utilising empirical ethics analysis, we evaluate the merits of systems proposed to increase deceased organ donation in South Africa. We conclude that SA should maintain its soft opt-in policy, and enhance it with ‘required transplant referral’ in order to maximise donor numbers within an ethically and legally acceptable framework. In SA, as is the case worldwide, the demand for donor organs far exceeds the supply thereof. Currently utilising a soft opt-in system, SA faces the challenge of how to increase (...) donor numbers in a context which is imbued with inequalities in access to healthcare, multiplicitous personal beliefs and practices, distrust of organ transplant and varying levels of education and health literacy. We argue that a hard opt-in, opt-out or mandated consent system would be problematic, and we present empirical data from Gauteng Province illustrating barriers to ethically sound practice in soft consent systems. Ultimately, we argue that in spite of some limitations, a soft opt-in system is most realistic for SA because its implementation does not require extensive public education campaigns at national level, and it does not threaten to further erode trust at a clinical level. However, to circumvent some of the clinical-level barriers identified in our empirical study, we propose a contextually sensitive option for “enabling” soft opt-in through “required transplant referral”. We argue that this system is legally defensible, enhances ethical practice and could also increase donor numbers as it has in many other countries. (shrink)

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. (...) These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard. (shrink)

This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients’ embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, (...) and the tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment. (shrink)

Organ donation is a life-saving process for patients suffering from an advanced organ failure. A disparity between donated organs and required organs for transplantation is one of the major problems in Iran. Since personal attitudes about organ donation is a main factor influencing willingness to donate organ, the present study sought to provide a deeper understanding of the attitudes of university students in Iran regarding organ donation. This qualitative study was conducted in 2016. Semi-structured interviews were held (...) for collecting data from eighty five students from various universities in Hamadan city, Iran. Using a purposive sampling method, the students were selected based on the maximum variation. The content analysis method was used for data analysis by the research team and criteria for the study’s rigor was considered. Overall, the students had positive attitudes toward organ donation by brain-dead patients. Nevertheless, not of them stated that they would become an organ donor. During the data analysis, 376 primary codes, 13 categories, and 6 themes were developed. Themes were “cognitive readiness”, “mediators of decision making”, “beliefs and motivations”, “interactions with the health system”, “dependency”, and “integrity of the body”. Also, thirteen sub-themes were developed. Many factors influence the students’ attitudes toward organ donation. Identification and explanation of these factors can help healthcare managers and policymakers for planning and improving the organ donation culture in the society. (shrink)

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations – concerns we call “non-welfare interests”. The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood. In order to better undersand the influence of non-welfare (...) interests, we surveyed a national sample of the US population using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants’ willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness. Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors’ non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations. (shrink)

Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe. Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing either knowledge or attitudes towards the systems of consent for deceased organ donation by lay people in Europe, including students. Study selection, data extraction, and quality assessment (...) were conducted by two or more reviewers independently. Findings: Awareness of the consent model was lower in opt-out countries than in opt-in countries. A majority of the public agrees with opt-in, regardless of the law in their own country. There are ambivalent attitudes regarding the opt-out system. The public tend to prefer opt-in and mandatory choice over opt-out when several options are offered. Interpretation: The assumption that people in opt-out countries are aware of the legal requirements to be excluded from the pool of potential donors is not supported by the results of this review. This is a concern, since ignorance hinders people's autonomy regarding organ donation decision-making. Higher awareness of consent model in opt-in countries may reflect greater efforts to inform the public through campaigns to motivate donation. Legal moves towards opt-out are at odds with people's expressed preferences. Main limitations of this review are the lack of data from some countries, study population heterogeneity, and methodological shortcomings. (shrink)

BackgroundThe success of biobanking is directly linked to the willingness of people to donate their biological materials for research and storage. Ethical issues related to patient consent are an essential component of the current biobanking agenda. The majority of data available are focused on population-based biobanks in USA, Canada and Western Europe. The donation decision process and its ethical applications in clinical populations and populations in countries with other cultural contexts are very limited. This study aimed to evaluate (...) the decision-making experience of the clinical biobank donors, as well as psychological and social motivators and deterrents of this decision and associated ethical risks.MethodsSemi-structured interviews were conducted in two medical institutions, in St Petersburg (Russia), in 2016–2017, among 13 donors of a clinical biobank (pregnant women, cardiac patients, and patients with multiple sclerosis) and three donation organisers—medical specialists involved in recruiting donors for a clinical biobank. Analysis of interview data was based on qualitative content analysis.ResultsDonors of a clinical biobank express beliefs in the absence of risks associated with the donation. The primary motivators for donating to the biobank were: prosocial, indirect reciprocity (response to or anticipation of an act in kind by a third party), intrinsic motivation (to enhance their self-esteem and satisfying their curiosity about the donation process), and comparability with personal values. A high level of trust in biomedical research and the particular physician can contribute to a favourable decision. The overall decision-making process regarding the biobank donation could be described as quick and not based on a careful reading of informed consent documents. The integration of biobank donation decision-making in the process of medical care might prompt patient to donate to biobank without proper consideration. The specific type of therapeutic misconception—the presence of unrealistic hope that donation could provide a direct benefit for a third person in need was discovered.ConclusionsPatients recruited to a clinical biobank in Russia have virtually no concerns as to the storage of their biomaterials. The donation decision is mainly motivated by prosocial attitudes and other factors that are similar to the motivating factors of blood donation. The fact of going through inpatient treatment and poor differentiation between donation for other people's benefit and for research purposes can make the process of obtaining consent more ethically problematic. (shrink)

This qualitative research study with a content analysis approach aimed to explore families’ experiences of an organ donation request after brain death. Data were collected through 38 unstructured and in-depth interviews with 14 consenting families and 12 who declined to donate organs. A purposeful sampling process began in October 2009 and ended in October 2010. Data analysis reached 10 categories and two major themes were listed as: 1) serenity in eternal freedom; and 2) resentful grief. The central (...) themes were peace and honor versus doubt and regret. The findings indicated that the families faced with an organ donation request of a brain-dead loved one experienced a lasting effect long after the patient's demise regardless of their decision to donate or refusal to donate. In conclusion, this study highlights the importance of family support and follow-up in an efficient healthcare system aimed at developing trust with the families and providing comfort during and after the final decision. (shrink)

Higgins’ et al recent paper1 presents a well-thought ethical analysis of the problems associated with the publication of unethical transplant research. More generally, research ethics committees never allow the use or reuse of data that has been collected without their required approval. Similarly, in many judicial settings, evidence is generally inadmissible when it is gathered illegally.2 Thus, journals and other publishers should follow in their footsteps and also roadblock any associated publications. Moreover, unethical organ donation and transplantation research (...) is rife with integrity issues, which violate publication norms. If these normally accepted exclusions3 are ignored, then publishers are turning off their moral compass and facilitating an attitude of ‘anything goes’ in the conduct of research. Table 1 presents a timeline of scholarly responses to the problem of publishing unethical transplant research. As shown, since 2007 there has been a slow evolution of changing publisher practices, yet more …. (shrink)

Biobanks and biospecimen collections are becoming a primary means of delivering personalized diagnostics and tailoring individualized therapeutics. This shift towards precision medicine requires interactions among a variety of stakeholders, including the public, patients, healthcare providers, government, and donors. Very few studies have investigated the role of healthcare students in biobanking and biospecimen donations. The main aims of this study were to evaluate the knowledge of senior healthcare students about biobanks and to assess the students’ willingness to donate biospecimens and the (...) factors influencing their attitudes. A cross-sectional study was conducted among senior healthcare students at King Abdulaziz University, Saudi Arabia. The data were obtained using a self-administered questionnaire in English. In addition to the respondents’ biographical data section, the questionnaire assessed the respondents’ general knowledge about biobanking, the factors influencing their willingness to donate biospecimens to biobanks and their general attitudes towards biomedical research. A total of 597 senior healthcare students were included in the study. The general knowledge score was 3.2 out of 7. Only approximately 44% and 27% of students were aware of the terms “Human Genome Project” and “biobank,” respectively. The majority of the students were willing to donate biospecimens to biobanks. Multiple factors were significantly associated with their willingness to donate, including their perceived general health, past experience with both tissue testing and tissue donation, biobanking knowledge score and biomedical research attitude score. The main reasons for students’ willingness to donate were advancement of medical research and societal benefits, whereas misuse of biospecimens and confidentiality breaches were the main reasons for a reluctance to donate. Despite their strong willingness to donate biospecimens, students exhibited a notable lack of knowledge about biobanking and the HGP. To expedite the transition towards PM, it is highly recommended to enhance healthcare curricula by including more educational and awareness programmes to familiarize students with OMICs technologies in addition to the scope of research and clinical applications. (shrink)

The DAP (Death Associated Protein) kinase family is a novel subfamily of pro-apoptotic serine/threonine kinases. All five DAP kinase family members identified to date are ubiquitously expressed in various tissues and are capable of inducing apoptosis. The sequence homology of the five kinases is largely restricted to the N-terminal kinase domain. In contrast, the adjacent C-terminal regions are very diverse and link individual family members to specific signal transduction pathways. There is increasing evidence that DAP kinase family members are involved (...) in both extrinsic and intrinsic pathways of apoptosis and may play a role in tumor progression. This review will focus on structural composition and subcellular localization of DAP kinase family members and on signal transduction pathways leading to their activation. Potential mechanisms of DAP kinase family-mediated apoptosis will be discussed. BioEssays 23:352–358, 2001. © 2001 John Wiley & Sons, Inc. (shrink)

Background Requirements for organ donation after cardiac or imminent death have been introduced to address the transplantable organs shortage in the United States. Organ procurement organizations (OPOs) increasingly use the Internet for organ donation consent. Methods An analysis of OPO Web sites available to the public for enrollment and consent for organ donation. The Web sites and consent forms were examined for the minimal information recommended by the United States Department of Health and Human Services for informed (...) consent. Content scores were calculated as percentages of data elements in four information categories: donor knowledge, donor consent reinforcement, donation promotion, and informed consent. Results There were 60 Web sites for organ donation enrollment serving the 52 states. The median percent (10 percentile-90 percentile) content scores of the Web sites for donor knowledge, donor consent reinforcement, and donation promotion were 33% (20–47), 79% (57–86), and 75% (50–100), respectively. The informed consent score was 0% (0–33). The content scores for donor knowledge and informed consent were significantly lower than donor consent reinforcement and donation promotion for all Web sites (P < .05). The content scores for the four categories were similar among the 11 regions of the United Network for Organ Sharing. Conclusion The Web sites and consent forms for public enrollment in organ donation do not fulfill the necessary requirements for informed consent. The Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of organ donation process. Independent regulatory oversight is essential to ensure that Internet enrollment for organ donation complies with legal and ethical standards for informed consent. (shrink)

Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who (...) had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics.We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions. (shrink)

With the rapid development of information and communication technology, social media-based donation platforms emerged.1 These platforms innovatively demonstrate peer information on the donation page, which inevitably brings the peer influence into donors’ donation decision process. However, how the peer influence will affect the psychological process of donation decisions are remained unknown. This study used the number of donated peers to examine the effects of peer influence on donors’ donation decisions and extracted event-related potential from electroencephalographic (...) data to explore the underlying psychological process. The behavioral results indicated that the number of donated peers positively influenced donors’ willingness to donate. The ERP results suggested that a larger number of donated peers might indicate a higher level of conformity and greater perceived emotional rewards, as a larger P2 amplitude was observed. Following the early processing of emotional stimuli, cognitive detection of decisional risk took place, and the donors reckoned a smaller number of donated peers as a high potential risk, which was reflected by a larger N2 amplitude. In the later stage, the larger number of donated peers, which represented a higher magnitude of prospective emotional rewards, led to a higher incentive to donate, and reflected in a larger amplitude of P3. Additionally, implications and future directions were discussed. (shrink)

In preparation for the development of a rapid tissue donation programme, we surveyed healthcare providers in our institution about knowledge and attitudes related to RTD with lung cancer patients. A 31-item web based survey was developed collecting data on demographics, knowledge and attitudes about RTD. The survey contained three items measuring participants’ knowledge about RTD, five items assessing attitudes towards RTD recruitment and six items assessing HCPs’ level of agreement with factors influencing decisions to discuss RTD. Response options (...) were presented on a 5-point Likert scale. Ninety-one HCPs participated in the study. 66% indicated they had never heard of RTD prior to the survey, 78% rated knowledge of RTD as none or limited and 95.6% reported not having ethical or religious concerns about discussing RTD with patients. The majority were either not comfortable or not sure if they felt comfortable discussing RTD with cancer patients . 56.1% indicated their knowledge of RTD would play an integral role in their decision to discuss RTD with patients. 71.4% reported concerns with RTD discussion and the emotional state of the patient. Physicians and nurses play an important role in initiating conversations about recruitment and donation to research that can ultimately influence uptake. Increasing HCP knowledge about RTD is a necessary step towards building an RTD programme. Our study provides important information about characteristics associated with low levels of knowledge and practice related to RTD where additional education and training may be warranted. (shrink)

In recent years, the concepts of charity and development aid have changed significantly. Present concepts combine direct money transfer with co-production, knowledge sharing and the development of products and services designed for the need of developing and transition economies. The concept of micro-financing is a financial service which has proven to allow for entrepreneurs in the respective countries to start up their businesses. A relatively new financial product for these countries is micro-insurance. This article deals with the question whether consumers (...) in the Netherlands are willing to donate micro-insurances and which factors influence this willingness to contribute to the non-profit micro-insurance approach of an insurance company. The data were collected with questionnaires among a sample of the Dutch population. The data have been processed in a one-way between-groups ANOVA, a paired sample t test and an ordinal regression analysis. The results show that approximately half of the Dutch consumers are willing to pay an additional amount on their insurance premium for the donation of micro-insurances. The amount of the insurance premium did, however, not affect the willingness to donate. If consumers could choose the beneficiary less people are willing to donate, yet those people are willing to donate more money. In conclusion, there is readiness among consumers to contribute to micro-insurance via an insurance company that assists in setting up micro-insurance projects. This indicates a possible role for companies to act as an intermediary between philanthropic acts and consumers. (shrink)

There has been a great deal of discussion about the ethical implications of donating sperm and of the ways in which donated tissue is presented, selected, and sold for use in assisted reproduction. Debates have emerged within the academic sphere, from donor offspring and recipients, and in broader popular culture, including questions about the commodification of human tissue and the eugenic potential of selecting donors from particular demographic categories. However, the voices of donors themselves on this subject have been largely (...) silent. This paper draws on data from qualitative interviews with men who donated at a major Danish sperm bank between 2012 and 2013. It argues that many of them are indeed thinking through these complex issues. Donors’ approaches to ethical issues fell into two broad ‘types’: a pragmatic, individualistic approach which focused on more immediate personal consequences, and an ethically-driven approach in which donors considered the impact of donation on offspring and on a wider societal level. (shrink)