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)

Cadaveric donation comprises organ donation—that is, taking organs from brain dead people, as well as tissue donation, meaning taking tissues from brain dead as well as heart dead people. The organ transplant procedure from brain dead patients is beyond the scope of the pathologist, as it is done by surgeons in the operating theatre. In a broader sense, however, pathologists are involved in cadaveric tissue donation as well as taking tissues from cadavers for diagnostic (...) procedures within the framework of the autopsy , and to gather material for research and training students and pathology residents . For cadaveric tissue donation, different ethical and practical issues must be considered, which we will try to review in this paper from the perspective of the pathologist.CADAVERIC TISSUE SAMPLING FOR TRANSPLANTATION PURPOSESSeveral tissues can be taken from “true” cadavers that may still be used for transplantation such as skin, corneas, tendons, bone. This is usually done in collaboration with the pathologist, who is in most countries responsible for the body after the death of the patient in the hospital. All these tissues can be harvested several hours after death, as they undergo only slow degradation. In The Netherlands, as dictated by law, patients must actively have given permission for donation during life by registering with the Transplantation Register. Since this procedure was implemented, the number of organs available for donation has not increased but decreased somewhat, while the number of tissues has increased. A great obstacle to the increase in the number of donations is that only 37% of the population is registered …. (shrink)

If a person requires an organ or tissue donation to survive, many philosophers argue that whatever moral responsibility a biological relative may have to donate to the person in need will be grounded at least partially, if not entirely, in biological relations the potential donor bears to the recipient. We contend that such views ignore the role that a potential donor's unique ability to help the person in need plays in underwriting such judgments. If, for example, a sperm (...) donor is judged to have a significant moral responsibility to donate tissue to a child conceived with his sperm, we think this will not be due to the fact that the donor stands in a close biological relationship to the recipient. Rather, we think such judgments will largely be grounded in the presumed unique ability of the sperm donor to help the child due to the compatibility of his tissues and organs with those of the recipient. In this paper, we report the results of two studies designed to investigate the comparative roles that biological relatedness and unique ability play in generating judgments of moral responsibility in tissue donation cases. We found that biologically related individuals are deemed to have a significant moral responsibility to donate tissue only when they are one of a small number of people who have the capacity to help. (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)

The current position on the deceased’s consent and the family’s consent to organ and tissue donation from the dead is a double veto—each has the power to withhold and override the other’s desire to donate. This paper raises, and to some extent answers, questions about the coherence of the double veto. It can be coherently defended in two ways: if it has the best effects and if the deceased has only negative rights of veto. Whether the double veto (...) has better effects than other policies requires empirical investigation, which is not undertaken here. As for rights, the paper shows that it is entirely possible that individuals have a negative right of veto but no positive right to compel acceptance of their offers. Thus if intensivists and transplant teams turn down the deceased’s offer, they do not thereby violate the deceased’s right. This leaves it open whether non-rights based reasons—such as avoiding bad publicity or distress —require intensivists and transplant teams to turn down or accept the deceased’s offer. This, however, is beyond the scope of this paper. The current position may or may not be wrong, but it is at least coherent. (shrink)

Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2–6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will (...) not be compromised due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients’ desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families. (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)

Organ donation after a circulatory determination of death is possible in selected patients where consent is given to support donation and the patient has been legally declared dead by two doctors. The National Health Act (61 of 2003) and regulations provide strict controls for the certification of death and the donation of organs and tissues after death. Although the National Health Act expressly recognises that brain death is death, it does not prescribe the medical standards of testing (...) for the determination of brain death (neurological determination of death), circulatory death (circulatory determination of death) or for determination of death based on somatic criteria. However, in all cases of organ donation, including after circulatory death, the National Health Act mandates that two doctors certify the death, with one doctor possessing more than 5 years of experience. Additionally, both doctors must be independent from the transplant team. The standard for such determination, as for brain death, aligns with accepted medical standards. The Critical Care Society of Southern Africa has published South African (SA) Guidelines on Death Determination that outline rigorous standards for death determination in hospital settings by either a neurological or circulatory method. Legislation and the Health Professions Council of SA’s (HPCSA) professional guidance direct clinicians on obtaining informed consent for donation either from the patient or in cases of incapacity from their surrogate decision maker. Collectively, the legislation, regulations and professional guidelines in SA provide a robust ethical framework that supports organ donation after circulatory death. (shrink)

There is growing interest in tissue procurement for cancer research through autopsy. Establishing an autopsy/tissue donation programme for breast cancer research within an academic medical centre i...

Background: The family interview context is permeated by numerous ethical issues which may generate conflicts and impact on organ donation process. Objective: This study aims to analyze the family interview process with a focus on principlist bioethics. Method: This exploratory, descriptive study uses a qualitative approach. The speeches were collected using the following prompt: “Talk about the family interview for the donation of organs and tissues for transplantation, from the preparation for the interview to the decision of the (...) family to donate or not.” For the treatment of qualitative data, we chose the method of content analysis and categorical thematic analysis. Participants: The study involved 18 nurses who worked in three municipal organ procurement organizations in São Paulo, Brazil, and who conducted family interviews for organ donation. Ethical considerations: The data were collected after approval of the study by the Research Ethics Committee of the School of Nursing of the University of São Paulo. Results: The results were classified into four categories and three subcategories. The categories are the principles adopted by principlist bioethics. Discussion: The principles of autonomy, beneficence, non-maleficence, and justice permeate the family interview and reveal their importance in the organs and tissues donation process for transplantation. Conclusion: The analysis of family interviews for the donation of organs and tissues for transplantation with a focus on principlist bioethics indicates that the process involves many ethical considerations. The elucidation of these aspects contributes to the discussion, training, and improvement of professionals, whether nurses or not, who work in organ procurement organizations and can improve the curriculum of existing training programs for transplant coordinators who pursue ethics in donation and transplantation as their foundation. (shrink)

The paper concerns the uncertainty in current propositions for the regulation of tissue donation. It focuses mainly on two statements issued in Germany. The scope of the paper is to give a systematic approach to ethical problems coming up in this field. Both statements try to maintain the idea of positive autonomy in regard to tissue donation, but their attempt eventually is forced to fail. Different procedures are proposed that most often are not practicable (because a (...) truly “informed” consent is impossible, or because optional models tend to overwhelm donors). Blanket consent is also proposed, but this form of consent cannot be seen as an expression of self-determination. Under the pretence of autonomy, donors are left alone with the task to control scientific research and to have their personal and property rights respected. Following this rather weak position of autonomy, in one statement there is a clear tendency to place the intrinsic value of research over the autonomy of the donor. In order to avoid this conclusion, autonomy has to be more than individual decision making. It has to be embedded in social and institutional rules which support and protect individual choice. If the benefits of research are supposed to lead to a common good and to satisfy public interests, then research has to be controlled through public institutions. Autonomy does not exclude institutional support, as institutional support is the only way to take the autonomy of donors seriously. (shrink)

The question of whether donors should be able to set conditions on who can receive their tissue has been discussed by bioethicists, but so far there has been little consideration of whether the answer to this question should be different depending on the type of tissue under discussion. In this article, we compare the donation of organs with the donation of reproductive material such as sperm, eggs, and embryos, exploring possible arguments for allowing donors to set (...) conditions in one case but not the other. After considering arguments from procreative liberty, special parental obligations, and donors meeting their genetic offspring, we find that there is no ethically defensible reason to have different policies between these two cases. As a consequence, we conclude that jurisdictions operating with this inconsistency should consider moving their policies into better alignment. We also make some recommendations for the standardisation of the terminology around conditional donation. (shrink)

Multidisciplinary Perspectives on the Donation of Stem Cells and Reproductive Tissue Content Type Journal Article Category Symposium Pages 15-17 DOI 10.1007/s11673-011-9351-x Authors Catherine Waldby, School of Social and Political Sciences, University of Sydney, Sydney, Australia Ian Kerridge, Centre for Values, Ethics and the Law in Medicine, Medical Foundation Building (K25), University of Sydney, Sydney, NSW 2006, Australia Loane Skene, Faculty of Law and Faculty of Medicine, Dentistry and Health Studies, University of Melbourne, Melbourne, VA, Australia Journal Journal of (...) Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529 Journal Volume Volume 9 Journal Issue Volume 9, Number 1. (shrink)

This article reviews the latest report from the Nuffield Council on Bioethics, Human Bodies: Donation for Medicine and Research. It argues that the report represents a notable evolution in the Council's position regarding the appropriate governance of the human body and biomaterials. It then goes on to examine in more depth one of the report's recommendations – that a pilot payment scheme for eggs for research purposes should be trialled. In particular, it looks at whether the distinctions drawn, first, (...) between eggs for research and therapeutic purposes and, secondly, between eggs for research and other biomaterials can be adequately justified. (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)

In the United States, people may donate organs and tissues to a family member, friend, or anyone whose specific need becomes known to them. For example, in late 2003 dozens of people came forward to donate a kidney to a professional basketball player known to them only through his sports performances. People may also donate a kidney to no one in particular through a process known as nondirected donation. In nondirected donation, people donate a kidney to the organ (...) allocation system rather than to anyone known to them personally. There are limits, though, to generosity. People are usually not allowed to donate to groups of people, no matter the contours of the group, whether white, black, Catholic or Presbyterian, third-time liver recipient, and so on. As the agency that oversees national transplantation policy, the United Network for Organs Sharing does not allow this sort of restricted donation, though it appears that some regional Organ Procurement Organizations occasionally bend the rules when donors insist that their organs go to children or to first-time recipients. Those ad hoc arrangements are, however, the exception to the rule. (shrink)

In an attempt to increase the number of organs available for transplantation, section 43 of the Human Tissue Act 2004 provides, for the first time, a statutory basis for the non-consensual preservation of organs. However, several issues arise out of the terminology of the section relating to where the preservation steps can be carried out and, indeed, what preservation steps can be performed which may affect the success of this attempt to increase the organ donor pool.

In their paper “Members First: The Ethics of Donating Organs and Tissues to Groups,” Timothy Murphy and Robert Veatch question the ethical underpinnings of LifeSharers, a grass-roots effort to increase the supply of organs by giving organ donors preferred access to organs.

In Aotearoa/new Zealand, organ donation and transplantation rates for Māori and non-Māori differ. This article outlines why this is so, and why some groups may be reticent about or object to organ donation and transplantation. In order to do this, I draw on the conceptual and methodological lens of phenomenology and apply what Van Manen calls the existential themes of lived body (corporeality), lived space (spatiality), lived time (temporality) and lived other (relationality and communality) to a discussion of (...) the cultural values and spiritual beliefs of Māori around tissue donation. Specifically, the aim of the article is to encourage non-Māori, who will already be aware that diverse cultural traditions transmit different beliefs about organ donation and transplantation, to recognize the existence of a deeper understanding of what this difference may mean for people on a felt level and how it might impact on lived experience. (shrink)

Controlled donation after circulatory determination of death (cDCDD) is an important strategy for increasing the pool of eligible organ donors.

More and more areas of medicine involve subjects donating tissues to another — blood, organs, bone marrow, sperm, ova and embryos can all be transferred from one person to another. Within the technical frameworks of biomedicine, such fragments are generally treated as detachable things, severed from social identity once they are removed from a particular body. However an abundant anthropological and sociological literature has found that, for donors and patients, human tissues are not impersonal. They retain some of the values (...) of personhood and identity, and their incorporation often has complex effects on embodied identity. This article draws on feminist philosophy of the body to think through the implications of some of these practices. Specifically, it draws on the idea of intercorporeality, wherein the body image is always the effect of embodied social relations. While this approach is highly productive for considering the stakes involved in tissue transfer, it is argued that the concept of body image has been too preoccupied with the register of the visual at the expense of introceptive data and health/illness events. Empirical data around organ transplant and sperm donation are used to demonstrate that the transfer of biological fragments involves a profound kind of intercorporeality, producing identifications and disidentifications between donors and recipients that play out simultaneously at the immunological, psychic and social levels. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Fetal Tissue ResearchMary Carrington Coutts (bio)I. IntroductionThe use of tissue from fetal remains for transplantation and biomedical research has become a controversial issue in recent years, involving scientists, doctors, patients, and the federal government. Fetal tissue is potentially useful in a wide range of treatments for a number of serious diseases, some of them affecting millions of people. Despite the promise, transplantation research using fetal (...) class='Hi'>tissue from induced abortion slowed dramatically in the U.S. in 1988, when a moratorium was declared on federal funding for such research involving humans. That moratorium was lifted by President Clinton on January 21, 1993. Though the future of fetal tissue transplantation research is brighter, public debate on the issue is likely to continue, exacerbated by the "acrimonious abortion debate" (VI, Post 1991, p. 14).Using fetal tissue in biomedical research and in transplantation is not a new practice. As early as 1928 unsuccessful attempts were made to transplant fetal pancreas cells into diabetics (VII, Fichera 1928). Fetal tissue was used effectively in biomedical research during the 1950s, and was instrumental in the culture of the polio virus, which led to the development of the polio vaccine. Fetal tissue cultures were also essential in the development of the rubella vaccine, and continue to be used in virology research. Transplantation of fetal thymus cells into patients with DiGeorge Syndrome has been recognized as effective therapy since the late 1960s.Many of the therapeutic applications involving fetal tissue are still experimental, so it is difficult to pinpoint fetal tissue transplantation's therapeutic potential. One promising application is the transplantation of human fetal brain cells into the substantia nigra of patients with Parkinson's disease to restore motor function. Fetal neural transplants have also shown promise for patients suffering from Alzheimer's disease, spinal cord and other neural tissue injuries, and possibly some forms of cortical blindness. Fetal liver cells may be useful for treatment of some kinds of bone marrow disease seen in leukemia and aplastic anemia patients. [End Page 81] Fetal tissue transplantation may also help those suffering from blood clotting disorders, such as sickle cell anemia, thalassemia, and hemophilia. Fetal pancreatic tissue has potential applications in the treatment of diabetes, especially juvenile onset diabetes. Human gene therapy may also employ embryonic and early fetal cells.The Center for Biomedical Ethics at the University of Minnesota reports that more than 1,000 patients have received transplanted fetal tissue worldwide. Countries where fetal tissue transplantation has occurred include: Australia, Canada, China, the Commonwealth of Independent States (formerly the U.S.S.R.), Cuba, Czechoslovakia, Finland, France, Germany, Great Britain, Hungary, India, Italy, Mexico, Norway, Spain, Sweden, and Yugoslavia (IV, Vawter 1992, p. 2; I, Spain 1988; VII, Reinikainen 1989).Fetal tissue has unique characteristics that make it especially valuable in some treatments. Fetal cells develop much faster than adult cells, hastening the therapeutic effect—a potentially significant benefit for gravely ill patients. They are also less likely to be rejected by transplant recipients because they are less antigenic than adult cells. This reduces the need for the exact tissue matches that can be so difficult to obtain. Fetal tissue is also easier to culture and proliferates more readily than comparable adult tissue. Furthermore, fetal tissue is in greater supply, due to the number of elective abortions.Questions about the use of fetuses and fetal tissue in biomedical research were raised in the United States in the early 1970s. Between 1969 and 1973, all 50 states enacted the Uniform Anatomical Gift Act, allowing for the donation of all or part of the body of a dead fetus for research or therapeutic research. Prospects for the use of fetal tissue increased after the Supreme Court decision in Roe v. Wade legalized abortion. As the availability of fetal tissue increased so did the concern over the potential for controversial research on living, soon-to-be-aborted fetuses, and anxiety over maltreatment of dead abortuses. Vivid examples include Geoffrey Chamberlain's 1968 report of an experiment on a fetus of 26 weeks gestational age. Delivered by hysterotomy from a 14-year-old patient, the fetus was attached to an "artificial placenta" and kept alive for more than... (shrink)

This brief report presents the global problem of the shortfall of donor corneal tissue for transplantation, a potential root cause (‘ick factor’ language), and a potential solution (modification of ‘ick factor’ language). Specifically, use of the term ‘eye donation’ is a potential hurdle to ocular tissue donation as it can stimulate the ‘ick factor.’ Verbiage such as ‘ocular (eye tissue)’ could be a method of providing terminology that is less emotive than ‘eye donor’ or ‘eye (...) donation.’ The field of transplantation has experienced terminology shifts over time; for example, ‘cadaver’ has been replaced with ‘deceased donor,’ ‘harvest’ has been replaced with ‘recover,’ and ‘life support’ has been replaced with ‘ventilated.’ Notably, only a small number of regions worldwide are using ‘ocular’ terminology, yet it could be an important step to enhancing the informed consent process and improving donation rates, potentially increasing transplant and optimising patient quality of life for those with treatable blindness. (shrink)

Human brain organoids are three-dimensional masses of tissues derived from human stem cells that partially recapitulate the characteristics of the human brain. They have promising applications in many fields, from basic research to applied medicine. However, ethical concerns have been raised regarding the use of human brain organoids. These concerns primarily relate to the possibility that brain organoids may become conscious in the future. This possibility is associated with uncertainties about whether and in what sense brain organoids could have consciousness (...) and what the moral significance of that would be. These uncertainties raise further concerns regarding consent from stem cell donors who may not be sufficiently informed to provide valid consent to the use of their donated cells in human brain organoid research. Furthermore, the possibility of harm to the brain organoids raises question about the scope of the donor’s autonomy in consenting to research involving these entities. Donor consent does not establish the reasonableness of the risk and harms to the organoids, which ethical oversight must ensure by establishing some measures to mitigate them. To address these concerns, we provide three proposals for the consent procedure for human brain organoid research. First, it is vital to obtain project-specific consent rather than broad consent. Second, donors should be assured that appropriate measures will be taken to protect human brain organoids during research. Lastly, these assurances should be fulfilled through the implementation of precautionary measures. These proposals aim to enhance the ethical framework surrounding human brain organoid research. (shrink)

With aims to both increase organ supply and better reflect individual donation preferences, many nations worldwide have shifted from ‘opt‐in’ to ‘opt‐out’ systems for post‐mortem organ donation (PMOD). In such countries, while a prospective donor's willingness to donate their organs/tissues for PMOD was previously ascertained—at least partially—by their having recorded positive donation preferences on an official register prior to death, this willingness is now presumed or inferred—at least partially—from their not having recorded an objection to PMOD—on an (...) official organ donation register. Using evidence regarding the presence and prevalence of selective donation preferences, and via exploration of how appeals to donation preferences are used to both motivate and legitimate shifts to opt‐out frameworks, this paper draws attention to a set of previously unexplored problems for opt‐out organ donation arising in contexts where: (a) individuals demonstrate selective post‐mortem organ/tissue donation preferences, (b) legislation provides prospective donors with the opportunity to selectively permit/refuse the donation of certain organs/tissues in line with these preferences. While selective preferences pose few problems for opt‐in systems where a selective occasion is built into the process of signing the donor register, this is not the case for opt‐out systems. The loss of this selective occasion can cause significant problems where appeals to preferences motivate/legitimate shifts to opt‐out but evidence regarding variable preferences does not feed into determinations regarding organ/tissue exclusions. The nature of these problems depends on how the authorization aspect of ‘opt‐out’ systems is framed (e.g. as presumed consent, deemed consent or, given the role of familial consent in many jurisdictions as consent in name only). (shrink)

Bioethical debates on the use of human embryos and oocytes for stem cell research have often been criticized for the lack of empirical insights into the perceptions and experiences of the women and couples who are asked to donate these tissues in the IVF clinic. Empirical studies that have investigated the attitudes of IVF patients and citizens on the donation of their embryos and oocytes have been scarce and have focused predominantly on the situation in Europe and Australia. This (...) article examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China. Research into the perceptions of patients is based on in-depth interviews with IVF patients and IVF clinicians. Research into the attitudes of students is based on a quantitative survey study. The empirical findings in this paper indicate that perceptions of the donation of human embryos for stem cell research in China are far more diverse and complex than has commonly been suggested. Claims that ethical concerns regarding the donation and use of embryos and oocytes for stem cell research are typical for Western societies but absent in China cannot be upheld. The article shows that research into the situated perceptions and cultural specificities of human tissue donation can play a crucial role in the deconstruction of politicized bioethical argumentation and the assumptions about “others” that underlie socio-ethical debates on the moral dilemmas of technology developments in the life sciences. (shrink)

The bill to restore federal funding for human fetal tissue research has been passed by the House and awaits Senate approval. But it requires women who are willing to donate fetal tissue to certify that they did not have an abortion with the intent to donate. It further requires researchers to keep the certifications on file and available for government audit. Both requirements spell trouble.

The Nuffield Council on Bioethics' recent report on the ethics of the donation of bodily material for treatment and research (Human Bodies: Donation for Medicine and Research. www.nuffieldbioethics.org/human-bodies) brings to the fore the much-debated question of how far society should go in trying to encourage people to donate their bodily material. Based on conclusions reached by the Working Party with respect to the duties of the stewardship state, the role of altruism and of solidarity, public interest in health-related (...) research, the welfare of the donor and the importance of ‘professional values’ such as trust and respect, the report presents an ‘Intervention Ladder’ that sets out the ethical acceptability of various ways of encouraging people to donate. Policy recommendations are made in a number of areas including organ donation, gamete donation, volunteering for clinical trials and the use of donated tissue in research. (shrink)

The Neuroscience Institute of Schizophrenia and Allied Disorders’s “Gift of Hope” Tissue Donor Program is a volunteer programme for people who wish to donate their brain when they die for neuroscience research into schizophrenia. Organ donation for purposes of research differs from transplant donation in a number of ways, most notably the absence of a single recipient. Within a particular community, however, the single recipient is replaced by a sense of shared experience and preventing suffering in others. (...) Donors have an investment in the research. (shrink)

Biobanks are currently archiving human materials for medical research at a hitherto unprecedented rate. These valuable resources will be essential for developing ‘personalized’ medicines and for a better understanding of disease susceptibilities. However, for such scientific advances to benefit everyone, it is crucial that biobanks recruit donations from all sections of the community. Unfortunately, other initiatives, such as transplant programmes, have clearly demonstrated that ethnic minorities are under-represented. Here we suggest that this issue deserves serious consideration to avoid biobanks evolving (...) into ethnically biased archives which unwittingly promote race-specific research. Specifically, this necessitates research ethics committees engaging in a re-assessment of the relative merits of individual personal sovereignty and the common good. (shrink)

The issue of directed donation of organs from deceased donors for transplantation has recently risen to the fore, given greater significance by the relatively stagnant rate of deceased donor donation in the UK. Although its status and legitimacy is explicitly recognized across the USA, elsewhere a more cautious, if not entirely negative, stance has been taken. In England, Wales and Northern Ireland, the Human Tissue Act 2004, and in Scotland the Human Tissue (Scotland) Act 2006, are (...) both silent in this regard. Although so-called conditional donation, donation to (or perhaps withheld from) a specific class, has been outlawed as a product of guidance issued by the Secretary of State for Health issued in the wake of the controversial incident occurring in the North of England in 1998, its intended application to ‘directed’ donation is less certain. Directed and conditional donations challenge the traditional construct of altruistic donation and impartial (equitable) allocation in a very immediate and striking fashion. They implicitly raise important questions as to whether the body or parts of the body are capable of being owned, and by whom. This paper attempts to explore the notion of donor ownership of body parts and its implications for both directed and conditional donation. (shrink)

There are not enough solid organs available to meet the needs of patients with organ failure. Thousands of patients every year die on the waiting lists for transplantation. Yet there is one currently available, underutilized, potential source of organs. Many patients die in intensive care following withdrawal of life-sustaining treatment whose organs could be used to save the lives of others. At present the majority of these organs go to waste.In this paper we consider and evaluate a range of ways (...) to improve the number and quality of organs available from this group of patients. Changes to consent arrangements (for example conscription of organs after death) or changes to organ donation practice could dramatically increase the numbers of organs available, though they would conflict with currently accepted norms governing transplantation.We argue that one alternative, Organ Donation Euthanasia, would be a rational improvement over current practice regarding withdrawal of life support. It would give individuals the greatest chance of being able to help others with their organs after death. It would increase patient autonomy. It would reduce the chance of suffering during the dying process. We argue that patients should be given the choice of whether and how they would like to donate their organs in the event of withdrawal of life support in intensive care.Continuing current transplantation practice comes at the cost of death and prolonged organ failure. We should seriously consider all of the alternatives. (shrink)

“I think there’s a big strong belief in [...] the community … and maybe it’s in the world at large that somehow the doctors are more concerned about harvesting the organs than what’s best for the patient.”1 In the past 45 years, organ and tissue recovery and transplantation have moved from the occasional and experimental to a standard of care for end-stage organ failure; receiving an organ transplant is for many the only opportunity for increased quantity and/or quality of (...) life. The increasing prevalence of diseases such as viral hepatitis, diabetes, and hypertension has significantly increased the incidence of end-organ failure. Additionally, surgical advances have permitted less stringent qualification criteria, so that people of advanced age or patients who may be in a physiologically fragile state are now eligible to be organ recipients. These changes have created a significant demand for organs. (shrink)

One effect of late capitalism – the commodification of practically everything – is to knock down the Chinese walls between the natural and productive realms, to use a Marxist framework. Women's labour in egg extraction and ‘surrogate’ motherhood might then be seen as what it is, labour which produces something of value. But this does not necessarily mean that women will benefit from the commodification of practically everything, in either North or South. In the newly developing biotechnologies involving stem cells, (...) the reverse is more likely, particular given the shortage in the North of the egg donors who will be increasingly necessary to therapeutic cloning.Although most of the ethical debate has focused on the status of the embryo, this is to define ethics with no reference to global or gender justice. There has been little or no debate about possible exploitation of women, particularly of ovum donors from the South. Countries of the South without national ethics committees or guidelines may be particularly vulnerable: although there is increasing awareness of the susceptibility of poorer countries to abuses in research ethics, very little has been written about how they might be affected by the enormously profitable new technologies exploiting human tissue. Even in the UK, although the new Medical Research Council guidelines make a good deal of the ‘gift relationship’, what they are actually about is commodification. If donors believe they are demonstrating altruism, but biotechnology firms and researchers use the discourse of commodity and profit, we have not ‘incomplete commodification’ but complete commodification with a plausibly human face. (shrink)

It is now eighteen years on since the Human Tissue Act 1961, but this legislation is still unchanged in England, Scotland and Wales. Ian Kennedy, in this paper, lays before us the law as it is, the problems of its interpretation and his opinion of what government should be doing to help clarify the situation and remove some of the problems which exist daily for the doctors who face the dilemma of seeking consent for transplants at the moment of (...) extreme grief for the surviving spouses or relatives of the patient who has been in his care only moments before. Ian Kennedy suggests that by doing nothing the Department of Health and the government are being both callous and less than honest. (shrink)

The cornea was the first human solid tissue to be transplanted successfully, and is now a common procedure in ophthalmic surgery. The grafts come from deceased donors. Corneal therapies are now being developed that rely on tissue from living-related donors. This presents new ethical challenges for ophthalmic surgeons, who have hitherto been somewhat insulated from debates in transplantation and donation ethics. This paper provides the first overview of the ethical considerations generated by ocular tissue donation (...) from living donors and suggests how these might be addressed in practice. These are discussed in the context of a novel treatment for corneal limbal stem cell deficiency. This involves limbal cell grafts which are transplanted, either directly or after ex vivo expansion, onto recipient stem cell-deficient eyes. Where only one eye is diseased, the unaffected eye can be used as a source of graft tissue. Bilateral disease requires an allogenic donation, preferably from a genetically related living donor. While numerous papers have dealt with the theory, surgical approaches and clinical outcomes of limbal stem cell therapies, none has addressed the ethical dimensions of this form of tissue donation. (shrink)

Two ethical frameworks have dominated the discussion of organ donation for long: that of property rights and that of gift-giving. However, recent years have seen a drastic rise in the number of philosophical analyses of the meaning of giving and generosity, which has been mirrored in ethical debates on organ donation and in critical sociological, anthropological and ethnological work on the gift metaphor in this context. In order to capture the flourishing of this field, this article distinguishes between (...) four frameworks for thinking about bodily exchanges in medicine: those of property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. These frameworks represent four different ways of making sense of donation of organs as well as tissue, gametes and blood, draw on different conceptions of the relations between the self and the other, and bring out different ethical issues as core ones. The article presents these frameworks, argues that all of them run into difficulties when trying to make sense of reciprocity and relational interdependence in donation, and shows how the three gift-giving frameworks (of heroism, sacrifice and aporia) hang together in a critical discussion about what is at stake in organ donation. It also presents and argues in favour of an alternative intercorporeal framework of giving-through-sharing that more thoroughly explicates the gift metaphor in the context of donation, and offers tools for making sense of relational dimensions of live and post mortem donations. (shrink)

This paper examines questions concerning elective ventilation, contextualised within English law and policy. It presents the general debate with reference both to the Exeter Protocol on elective ventilation, and the considerable developments in legal principle since the time that that protocol was declared to be unlawful. I distinguish different aspects of what might be labelled elective ventilation policies under the following four headings: ‘basic elective ventilation’; ‘epistemically complex elective ventilation’; ‘practically complex elective ventilation’; and ‘epistemically and practically complex elective ventilation’. (...) I give a legal analysis of each. In concluding remarks on their potential practical viability, I emphasise the importance not just of ascertaining the legal and ethical acceptability of these and other forms of elective ventilation, but also of assessing their professional and political acceptability. This importance relates both to the successful implementation of the individual practices, and to guarding against possible harmful effects in the wider efforts to increase the rates of posthumous organ donation. (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 UK Human Fertilisation and Embryology Authority was right to permit tissue typing preimplantation genetic diagnosisOn July 21 2004, the Human Fertilisation and Embryology Authority , Britain’s regulatory agency for reproductive technologies, revised its policy on preimplantation genetic diagnosis for tissue typing.1,2 The authority of the HFEA to enact such a policy was affirmed by the UK’s highest court, the House of Lords, on April 28 2005.3 Preimplantation genetic diagnosis combines in vitro fertilisation with genetic testing. In PGD, (...) embryos generally undergo biopsy prior to the eight cell stage, followed by genetic testing for a particular trait. Tissue typing PGD is done to identify an embryo that is tissue matched for a child suffering from a severe disease requiring bone marrow or cord blood stem cell transplantation and for whom no living donor exists. This procedure was first performed in 2000.4 Precise matching of tissue types is critical to successful tissue transplant, and the donors of such tissues are often referred to as “saviour siblings”.Where a tissue matched individual already exists, extracting bone marrow from that individual or collecting cord blood already in storage, rather than creating a match, presents the most immediate treatment alternative. Bone marrow donation from adults or other medically competent individuals is not generally ethically contested, and bone marrow donation from medically incompetent individuals is also permissible under certain conditions.5 Where no living tissue donor exists, however, intentionally creating a donor through tissue typing PGD is among a short list of possible treatment options.The July HFEA policy change makes PGD licensable in cases where tissue typing is the only purpose of testing. Previously, PGD was licensable in the UK only for disease testing, and tissue typing PGD was permissible only when …. (shrink)

The historical context of body and tissue donation is deeply problematic, with patriarchal and colonial narratives. The contemporary context of molecular and genetic biology further complicates issues of bodily donation through narratives of abstraction and extraction. As practitioners working outside the conventional boundaries of scientific study learn the tools and techniques to extract and use bodily materials, they are also learning and challenging the procedures and processes. This article approaches questions of bodily donation through the edited (...) transcript of a conversation between artists who regularly use body fluids and cellular bodily materials in their practice, moderated by Louise Mackenzie and Ilke Turkmendag as part of the Taboo–Transgression–Transcendence in Art & Science Conference held online with the support of the University of Applied Arts, Vienna, 2020. The panel challenged the ethical and conceptual assumptions made in biotechnological research and reconsidered where the boundaries of the body lie, what ‘authority’ research carries and what choices researchers make when using the bodies of others. The transcribed conversation addresses taboos of the female body, specifically menstruation, the commodification of tissue from female human bodies, human milk politics and questions biopolitical treatment of the female body. The full, unedited panel conversation, including questions from the audience, and an accompanying video of edited interviews with panellists, is available online at https://www.loumackenzie.com/offering-the-body. (shrink)

At the end of 1999 the Danish Council of Ethics published a report on organ and tissue donation from living donors. The report focused on kidney and bone marrow transplantations, as these are presently the most common transplantations from live donors. During the work on the report, it became clear to the Council that, apart from problems concerning coercion and commercialization that affected both adult and child donors, by far the largest ethical problems occurred in donations from children.

In Canada, laws and policies consistently reject the commodification of human organs and tissues, and Canadian practice is consistent with international standards in this regard. Until the Assisted Human Reproduction Act of 2004, gamete donation in Canada was an exception: Canadians could pay and be paid open market rates for gametes for use in in vitro fertilization. As sections of the AHR Act forbidding payment for gametes and permitting only reimbursement of receipted expenses gradually came into effect in 2005, (...) Canada did away with this anomaly. Medical practice and legal prohibitions in assisted human reproduction are now consistent with other areas of medicine where tissues and organs are taken from one person to benefit others: Altruistic donation, rather than selling and buying, will be the norm. (shrink)

BackgroundThe COVID-19 pandemic has had a significant impact on the health system worldwide. The organ and tissue donation and transplantation (OTDT) system is no exception and has had to face ethical challenges related to the pandemic, such as risks of infection and resource allocation. In this setting, many Canadian transplant programs halted their activities during the first wave of the pandemic.MethodTo inform future ethical guidelines related to the COVID-19 pandemic or other public health emergencies of international concern, we (...) conducted a literature review to summarize the ethical issues.ResultsThis literature review identified three categories of ethical challenges. The first one describes the general ethical issues and challenges reported by OTDT organizations and transplantation programs, such as risks of COVID-19 transmission and infection to transplant recipients and healthcare professionals during the transplant process, risk of patient waitlist mortality or further resource strain where transplant procedures have been delayed or halted, and resource allocation. The second category describes ethical challenges related to informed consent in the context of uncertainty and virtual consent. Finally, the third category describes ethical issues related to organ allocation, such as social considerations in selecting transplant candidates.ConclusionThis literature review highlights the salient ethical issues related to OTDT during the current COVID-19 pandemic. As medical and scientific knowledge about COVID-19 increases, the uncertainties related to this disease will decrease and the associated ethical issues will continue to evolve. (shrink)

This article examines an Australian campaign to increase organ and tissue donation for transplantation. It analyses the use of the gift rhetoric to promote community awareness and resources, target migrant groups, and recruit cultural and religious leaders to endorse organ and tissue donation as an altruistic act. In unpacking this ‘gift of life’ approach to organ donation, it explores the convergence of medical and religious bodies and pushes beyond uniform determinations of death to reveal how (...) multiple deaths transpire in organ donation. Drawing on recent advances in the anthropology of becoming as a critical lens to examine death and organ donation, it examines how the ‘unfinishedness’ of donor bodies produces new possibilities for understanding donation. This article thus attends to the situated, layered and contradictory sensibilities that open up multiple and malleable understandings of the donation of body parts. (shrink)

The use of aborted fetal tissues in research and therapy has raised exciting possibilities and a host of social, legal and ethical issues. Perhaps the most difficult issue is whether the use of materials from elective abortion can be viewed and weighed separately from the abortion itself, or if in using these tissues there is inherent complicity with the abortion act. Those who oppose FTT claim that there is complicity with the abortion act and liken the use of fetal (...) class='Hi'>tissue from abortions to the use of data from the Nazi experiments. Within this lobby are those who claim that the option to donate fetal tissues will make abortion a more attractive alternative for pregnant women, and that there are doctors who will offer fetal tissue donation as a positive incentive to abortion-with the net effect that more abortions will take place. (shrink)

The use of aborted fetal tissues in research and therapy has raised exciting possibilities and a host of social, legal and ethical issues. Perhaps the most difficult issue is whether the use of materials from elective abortion can be viewed and weighed separately from the abortion itself, or if in using these tissues there is inherent complicity with the abortion act. Those who oppose FTT claim that there is complicity with the abortion act and liken the use of fetal (...) class='Hi'>tissue from abortions to the use of data from the Nazi experiments. Within this lobby are those who claim that the option to donate fetal tissues will make abortion a more attractive alternative for pregnant women, and that there are doctors who will offer fetal tissue donation as a positive incentive to abortion-with the net effect that more abortions will take place. (shrink)

This study examined health professionals’ (HPs) experience, beliefs and attitudes towards brain death (BD) and two types of donation after circulatory death (DCD)—controlled and uncontrolled DCD. Five hundred and eighty-seven HPs likely to be involved in the process of organ procurement were interviewed in 14 hospitals with transplant programs in France, Spain and the US. Three potential donation scenarios—BD, uncontrolled DCD and controlled DCD—were presented to study subjects during individual face-to-face interviews. Our study has two main findings: (1) (...) In the context of organ procurement, HPs believe that BD is a more reliable standard for determining death than circulatory death, and (2) While the vast majority of HPs consider it morally acceptable to retrieve organs from brain-dead donors, retrieving organs from DCD patients is much more controversial. We offer the following possible explanations. DCD introduces new conditions that deviate from standard medical practice, allow procurement of organs when donors’ loss of circulatory function could be reversed, and raises questions about “death” as a unified concept. Our results suggest that, for many HPs, these concerns seem related in part to the fact that a rigorous brain examination is neither clinically performed nor legally required in DCD. Their discomfort could also come from a belief that irreversible loss of circulatory function has not been adequately demonstrated. If DCD protocols are to achieve their full potential for increasing organ supply, the sources of HPs’ discomfort must be further identified and addressed. (shrink)