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)

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 (...) class='Hi'>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)

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 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)

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)

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)

Most donated organs in the United States come from brain dead donors, while a small percentage come from patients who die in “controlled,” or expected, circumstances, typically after the family or surrogate makes a decision to withdraw life support. The number of organs available for transplant could be substantially if donations were permitted in “uncontrolled” circumstances–that is, from people who die unexpectedly, often outside the hospital. According to projections from the Institute of Medicine, establishing programs permitting “uncontrolled donation after (...) circulatory determination of death,” or uDCDD, throughout the United States has the potential to provide 22,000 more donation opportunities annually. In contrast, U.S. controlled donation after circulatory determination of death, or cDCDD, cases have increased progressively over the past decade from 87 to 848 donors, but currently account for only 10.6 percent of all deceased donors. Following the IOM recommendations, several projects exploring the feasibility of uDCDD were funded by the federal government, including a grant from the Health Resources and Services Administration that supported a pilot project in New York City in which the authors of this article participated.A key feature of our protocol, and indeed of many uDCDD protocols, is the initiation of preservation methods such as chest compressions and extracorporeal membrane oxygenation shortly after death in order to perfuse and preserve the donor's organs. Critics of uDCDD argue that the means of determining death deviates from generally ascribed principles. They assert that reinstituting circulation in order to preserve organs has the effect of “undoing” the prior determination of death. The result is that cDCDD is widely accepted and practiced routinely even though it only marginally increases the number of organs available for transplantation, and uDCDD is widely considered unacceptable despite being ethically embraced and proven to significantly increase organ donation opportunities in other countries. This article explores the evolution of this counterintuitive state of affairs and calls for a policy that, in line with the IOM report, allows for both cDCDD and uDCDD protocols. (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)

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)

Background: Black, Asian and minority ethnic groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks. Objective: To identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent. Methods: Three-phase programme comprising community-based (...) research involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; hospital-based research examining staff practices and influences on family consent through ethics discussion groups with staff, a study on intensive care units and interviews with bereaved ethnic minority families; and development and evaluation of a training package to enhance cultural competence among ICU staff. Setting: Community focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts. Participants: Community studies: 228 focus group participants; hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and evaluation: 66 health professionals. Data sources: Focus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation. Review methods: Systematic review and narrative synthesis. Results: Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. Evaluation: professional development package – a digital versatile disk-based training package was developed to promote confidence and skills in cross-cultural communication. Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation. Limitations: Participants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families. Conclusions: The research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS. Future work: Greater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families. Funding: The National Institute for Health Research Programme Grants for Applied Research programme. (shrink)

In China, many private entrepreneurs have obtained political offices in the government. In this study, we argue that Chinese private entrepreneurs who are formally connected with government institutions, compared to other Chinese private entrepreneurs, tend to contribute more to philanthropic causes not only for instrumental concerns but also out of altruistic values. We submit this argument to an empirical test through a secondary data analysis of a representative sample of Chinese entrepreneurs collected by a coalition of government and industry (...) groups. The results of this analysis show that politically connected entrepreneurs are more likely to make major philanthropic donations and, at the same time, hold a stronger sense of the responsibility for doing so. The most important contribution of this research is that it reveals the ethical basis of the philanthropic activities of Chinese private entrepreneurs, especially those with political connections, that has been unappreciated by extant literature. (shrink)

ART and, in particular, IVF and ICSI, are essentially a laboratory experiment, but which, due to its specificity, goes beyond the disciplinary boundaries, explicitly acquiring an ethical-axiological dimension in the interaction zone of the members of a particular community involved in child-bearing. At the same time, it is noted that the activity and choice of a way to solve problems with childbirth has a characteristic severity, due to the traditions and level of civil and social maturity of a country, due, (...) among other things, to the level and achievements of technical equipment in this industry of knowledge and practice. According to foreign studies, about half of all subfertile people in developed countries are trying to overcome their infertility with the help of medicine, and research data indicate that the proportion of such individuals is growing. The most difficult problems of reproduction are associated with low quality of oocytes or low ovarian reserve ; aspermia and deep teratozoospermia, can not give hope to a couple to have genetically related offspring. However, donor programs create additional opportunities for social motherhood / paternity. Donation of oocytes is found in ART programs at least 3 times more often than donation of spermatozoa. At the moment, donation of gametes and embryos raises a number of ethical, legal, medical and socio-psychological issues that require competent support from experts of a wide range of specialists, as well as competent, non-commercial, primarily due to the interaction between donors and recipients. The analysis of possible modifications of family and kinship ties is based on the idea of transforming social relations, in which assisted reproductive technologies play a fundamental role, building a system of “new kinship and new family.” By entering into the intimate process of the birth of life and acting as a regulator of the composition of participants in this process through the stimulation of responsibility to present and future relatives, reproductive technologies affect the initial moral requirements in the community, redefining universal values based on the specific situation. Scenarios of childbearing through ART with the involvement of additional participants are possible in the context of the legal field, but legally fixed anonymity of the donor leaves many unresolved issues related to the problems of hereditary diseases, genetic abnormalities and epigenetic changes; in addition, there is a problem associated with the possibility of unintentional incest, as well as the difficulties of the child’s self-identification and the closeness of his genealogy. Solutions to these issues are postponed until later, thereby initiating future dramatic situations, ethical conflicts and dilemmas with a poorly predictable positive outcome. (shrink)

In China, many private entrepreneurs have obtained political offices in the government. In this study, we argue that Chinese private entrepreneurs who are formally connected with government institutions, compared to other Chinese private entrepreneurs, tend to contribute more to philanthropic causes not only for instrumental concerns but also out of altruistic values. We submit this argument to an empirical test through a secondary data analysis of a representative sample of Chinese entrepreneurs collected by a coalition of government and industry (...) groups. The results of this analysis show that politically connected entrepreneurs are more likely to make major philanthropic donations and, at the same time, hold a stronger sense of the responsibility for doing so. The most important contribution of this research is that it reveals the ethical basis of the philanthropic activities of Chinese private entrepreneurs, especially those with political connections, that has been unappreciated by extant literature. (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)

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)

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)

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)

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)

Organ donation after cardiac or circulatory death (DCD) has been introduced to increase the supply of transplantable organs. In this paper, we argue that the recovery of viable organs useful for transplantation in DCD is not compatible with the dead donor rule and we explain the consequential ethical and legal ramifications. We also outline serious deficiencies in the current consent process for DCD with respect to disclosure of necessary elements for voluntary informed decision making and respect for the donor's (...) autonomy. We compare two alternative proposals for increasing organ donation consent in society: presumed consent and mandated choice. We conclude that proceeding with the recovery of transplantable organs from decedents requires a paradigm change in the ethics of organ donation. The paradigm change to ensure the legitimacy of DCD practice must include: (1) societal agreement on abandonment of the dead donor rule, (2) legislative revisions reflecting abandonment of the dead donor rule, and (3) requirement of mandated choice to facilitate individual participation in organ donation and to ensure that decisions to participate are made in compliance with the societal values of respect for autonomy and self-determination. (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)

Organ donations after cardiac death account for about 20 percent of all vital-organ transplantations in the United States. This article evaluates DCDs in light of the Catholic moral tradition. Certain premortem interventions commonly associated with DCDs are morally impermissible even though the injuries they inflict on the patient are ostensibly inconsequential. More importantly, the criteria used for expeditiously assaying circulatory death—criteria which enhance the effectiveness of DCDs—do not always guarantee that the donor is actually deceased. Unless DCD protocols attend to (...) these ethical problems, Catholic hospitals are obliged to abandon the practice. (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)

Ethics is a foundational competency in healthcare inherent in everyday nursing practice. Therefore, the promotion of qualified nurses’ and nursing students’ moral competence is essential to ensure ethically high-quality and sustainable healthcare. The aim of this integrative literature review is to identify the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence. The review has been registered in PROSPERO (CRD42023386947) and reported according to the PRISMA guideline. Focusing on qualified nurses’ and nursing students’ moral competence, (...) a literature search was undertaken in January 2023 in six scientific databases: CINAHL, Cochrane Library, PsycINFO, PubMed Medline, Scopus and Web of Science. Empirical studies written in English without time limitation were eligible for inclusion. A total of 29 full texts were retrieved and included out of 5233 citations. Quality appraisal was employed using Joanna Briggs Institute checklists and the Mixed Method Appraisal Tool. Data were analysed using inductive content analysis. Research about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence is limited and mainly explored using descriptive research designs. The contributing factors were identified as comprising two main categories: (1) human factors, consisting of four categories: individual, social, managerial and professional factors, and ten sub-categories; and (2) structural factors, consisting of four categories: educational, environmental, organisational and societal factors, and eight sub-categories. This review provides knowledge about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence for the use of researchers, nurse educators, managers, organisations and policymakers. More research about the contributing factors is needed using complex intervention, implementation and multiple methods designs to ensure ethically sustainable healthcare. (shrink)

The vast majority of gamete donations worldwide are made anonymously, and in some countries, including Spain, France, and Denmark, the anonymity of donors is explicitly protected by law. Nonetheless, a growing number of countries have called into question the morality of such practices and are enacting laws allowing children access to identifying information about their gamete donor. A significant reason for the growing legislative support for nonanonymous gamete donations is the belief that donor‐conceived children have a fundamental moral right to (...) know their genetic origins and that the right should be legally protected. A variety of factors, such as the increasing number of children born by means of gamete donation, advances in genetic science and technology that make it easy to discover the identity of a person's genetic parents, and the widespread belief that genetic information is important for protecting people's health, have made this alleged right quite salient, even leading some to challenge the ethical appropriateness of gamete donation practices altogether. Often, however, this right is assumed rather than explicitly justified. The purpose of this paper is to call into question the ethical justifications that are often thought to ground a right to know one's genetic origins.Proponents of a right to know this information usually argue that such a right protects at least three vital interests: the interest of donor‐conceived people in having strong family relationships, their health interests, and their interest in forming a healthy identity. These different interests might be protected by different aspects of the right to know one's genetic origins: knowing one's mode of conception, accessing medically relevant information, and accessing identifying information about one's genetic parents. I will discuss each of these interests and explore whether and how they might be set back by an individual's lack of access to information about his or her genetic parentage. I will also evaluate whether donor anonymity policies are, as many of their opponents argue, morally impermissible because they fail to protect these important interests. (shrink)

The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of (...) the ethical implications of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (shrink)

The global shortage of organs for transplantation and the development of new and better medical technologies for organ preservation have resulted in a renewed interest in non-heart-beating donation (NHBD). This article discusses ethical questions related to controlled and uncontrolled NHBD. It argues that certain preparative measures, such as giving anticoagulants, should be acceptable before patients are dead, but when they have passed a point where further curative treatment is futile, they are in the process of dying and they are (...) unconscious. Furthermore, the article discusses consequences of technological developments based on improvement of a chest compression apparatus used today to make mechanical heart resuscitation. Such technological development can be used to transform cases of non-controlled NHBD to controlled NHBD. In our view, this is a step forward since the ethical difficulties related to controlled NHBD are easier to solve than those related to non-controlled NHBD. However, such technological developments also evoke other ethical questions. (shrink)

This paper will present and discuss our conclusions about the ethics of living donation for liver transplant (LDLT) after 8 year of collaboration between our clinical ethics consultation service and liver transplant teams, in the course of which we met with all donor-candidates. We will focus on the results of a follow-up study that was conducted in order to evaluate the long-term consequences for potential donors and to interview them on the ethical aspects of the screening process. (...) This study was conducted from April 2007 to November 2009 and consisted of interviews with donor-candidates, regardless of whether they underwent harvest surgery, at least 1 year after the recipient’s transplant. We explored their views about their own and the recipients’ physical and psychological condition, changes in family and career dynamics, their experience as potential or real donors, and their views about LDLT process in general. Results shed new light on the ethical grounds of LDLT and allow us to envisage new ways of improving the ethical soundness of current procedures and practices. In particular, we argue that the purpose of an ethics committee should be to provide follow-up support for the donors rather than merely to check the freedom of donors’ consent. We also suggest that the recipient’s consent deserves more attention than it currently receives. (shrink)

Plasma protein therapies are a group of essential medicines extracted from human plasma through processes of industrial scale fractionation. They are used primarily to treat a number of rare, chronic disorders ensuing from inherited or acquired deficiencies of a number of physiologically essential proteins. These disorders include hemophilia A and B, different immunodeficiencies and alpha 1-antitrypsin deficiency. In addition, acute blood loss, burns and sepsis are treated by PPTs. Hence, a population of vulnerable and very sick individuals is dependent on (...) these products. In addition, the continued well-being of large sections of the community, including pregnant women and their children, travelers and workers exposed to infectious risk is also subject to the availability of these therapies. Their manufacture to adequate amounts requires large volumes of human plasma as the starting material of a complex purification process. Mainstream blood transfusion services run primarily by the not-for-profit sector have attempted to provide this plasma through the separation of blood donations, but have failed to provide sufficient amounts to meet the clinical demand. The collection of plasma from donors willing to commit to the process of plasmapheresis, which is not only time consuming but requires a long term, continuing commitment, generates much higher amounts of plasma and has been an activity historically separate from the blood transfusion sector and run by commercial companies. These companies now supply two-thirds of the growing global need for these therapies, while the mainstream government-run blood sector continues to supply a shrinking proportion. The private sector plasmapheresis activity which provides the bulk of treatment products has been compensating the donors in order to recognize the time and effort required. Recent activities have reignited the debate regarding the ethical and medical aspects of such compensation. In this work, we review the landscape; assess the contributions made by the compensated and non-compensated sectors and synthesize the outcomes on the relevant patient communities of perturbing the current paradigm of compensated plasma donation. We conclude that the current era of “Patient Centeredness” in health care demands the continuation and extension of paid plasma donation. (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)

Data sharing – broadly defined as the exchange of health-related data among multiple controllers and processors – has gained increased relevance in the health sciences over recent years as the need and demand for collaboration has increased. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. The practice of data sharing presents several notable challenges, however. Compliance with a complex and dynamic regulatory framework is (...) essential, with the General Data Protection Regulation being a prominent example in a European context. Recent regulatory developments related to clinical trial transparency, trade secrecy, data access, AI training data, and health data spaces further contribute to the difficulties. Simultaneously, government initiatives often encourage scientists to embrace principles of “open data” and “open innovation.” The variety of regulations in this domain has the potential to impede widespread data sharing and hinder innovation. This edited volume, therefore, compiles comparative case studies authored by leading scholars from diverse disciplines and jurisdictions. The book aims to outline the legal complexities of data sharing. By examining real-world scenarios from diverse disciplines and a global perspective, it explores the normative, policy, and ethical dilemmas that surround data sharing in the health sciences today. Chapter Patient Perspectives on Data Sharing, Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. (shrink)

A recent commentary defends 1) the concept of 'brain arrest' to explain what brain death is, and 2) the concept that death occurs at 2–5 minutes after absent circulation. I suggest that both these claims are flawed. Brain arrest is said to threaten life, and lead to death by causing a secondary respiratory then cardiac arrest. It is further claimed that ventilation only interrupts this way that brain arrest leads to death. These statements imply that brain arrest is not death (...) itself. Brain death is a devastating state that leads to death when intensive care, which replaces some of the brain's vital functions such as breathing, is withdrawn and circulation stops resulting in irreversible loss of integration of the organism. Circulatory death is said to occur at 2–5 minutes after absent circulation because, in the context of DCD, the intent is to not attempt reversal of the absent circulation. No defense of this weak construal of irreversible loss of circulation is given. This means that paents in identical physiologic states are dead (in the DCD context) or alive (in the resuscitation context); the current state of death (at 2–5 minutes) is contingent on a future event (whether there will be resuscitation) suggesting backward causation; and the commonly used meaning of irreversible as 'not capable of being reversed' is abandoned. The literature supporting the claim that autoresuscitation does not occur in the context of no cardiopulmonary resuscitation is shown to be very limited. Several cases of autoresuscitation are summarized, suggesting that the claim that these cases are not applicable to the current debate may be premature. I suggest that brain dead and DCD donors are not dead; whether organs can be harvested before death from these patients whose prognosis is death should be debated urgently. (shrink)

A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.

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)

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)

According to the causal theory of parenthood, people incur parental obligations by causing children to exist. Proponents of the causal theory often argue that gamete donors have special obligations to their genetic offspring. In response, many defenders of current gamete donation practices would reject the causal theory. In particular, they may invoke the ‘too many parents problem’: many people who causally contribute to the existence of children – for instance, fertility doctors – do not thereby incur parental obligations. This (...) article argues that the conclusions commonly drawn by causal theorists, and by their critics, are premature. Causal theorists have a promising response to the too many parents problem. This response, however, defuses the moral concern that many causal theorists have raised about gamete donation. A similar point, it is argued, applies to Rivka Weinberg’s ‘Hazmat Theory’. -/- . (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Data analytics and data-driven approaches in Machine Learning are now among the most hailed computing technologies in many industrial domains. One major application is predictive analytics, which is used to predict sensitive attributes, future behavior, or cost, risk and utility functions associated with target groups or individuals based on large sets of behavioral and usage data. This paper stresses the severe ethical and data protection implications of predictive analytics if it is used to predict sensitive information (...) about single individuals or treat individuals differently based on the data many unrelated individuals provided. To tackle these concerns in an applied ethics, first, the paper introduces the concept of “predictive privacy” to formulate an ethical principle protecting individuals and groups against differential treatment based on Machine Learning and Big Data analytics. Secondly, it analyses the typical data processing cycle of predictive systems to provide a step-by-step discussion of ethical implications, locating occurrences of predictive privacy violations. Thirdly, the paper sheds light on what is qualitatively new in the way predictive analytics challenges ethical principles such as human dignity and the (liberal) notion of individual privacy. These new challenges arise when predictive systems transform statistical inferences, which provide knowledge about the cohort of training data donors, into individual predictions, thereby crossing what I call the “prediction gap”. Finally, the paper summarizes that data protection in the age of predictive analytics is a collective matter as we face situations where an individual’s (or group’s) privacy is violated using dataotherindividuals provide about themselves, possibly even anonymously. (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 (...) 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)

This book offers a reflection on the central role that the ethics of informed consent plays in Rapid Tissue Donation. RTD is an advanced oncology procedure that involves the procurement, for research purposes, of “fresh” tissues within two to six hours of a cancer patient’s death. Since RTD involves the retrieval of tissues after death, and since the collected tissues are of great importance for medical research, the need for any form of informed consent to regulate this procedure (...) has been questioned. This book argues for the necessity of informed consent to govern RTD, and it provides the reader with a bespoke informed consent process applicable to cancer patients. The analysis unfolds at the intersection between applied ethics, public health ethics, and clinical ethics, and it is informed by philosophical theories of informed consent and by the social implications of individual choices. By viewing medical issues relating to informed consent in oncology from an ethical perspective, the book combines philosophical analysis with discussion of concrete cancer-related issues. As a result, the book is suitable for readers interested in ethical reasoning as well as for those with a medical background. It contributes to contemporary research by offering an original analysis that relies on a rigorous philosophical approach to address innovative issues at the cutting edge of medical research and policy making. (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)

As big data techniques become widespread in journalism, both as the subject of reporting and as newsgathering tools, the ethics of data science must inform and be informed by media ethics. This article explores emerging problems in ethical research using big data techniques. It does so using the duty-based framework advanced by W.D. Ross, who has significantly influenced both research science and media ethics. A successful framework must provide stability and flexibility. Without stability, ethical (...) precommitments will vanish as technology rapidly shifts costs. Without flexibility, traditional approaches will rapidly become obsolete in the face of technological change. The article concludes that Ross's duty-based approach both provides stability in the face of rapid technological change and flexibility to innovate to achieve the original purpose of basic ethical principles. (shrink)

In 2015, the FDA revised its indefinite deferral policy towards MSM blood donors. I develop an empirical case for the revised policy and show why rights-based objections fail. I introduce and defend a distinction between “ordinary” and “exact” justification that accounts for the worries in the empirical case. I conclude that the FDA is committed to further revising the policy to let MSM donors with exact justification donate.

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)

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)