Public awareness of organ donation.

A telephone survey of public attitudes toward organ donation and transplantation was conducted in a community in southwestern Ontario. The subjects were selected at random; the response rate was 57%. Of the 50 respondents 62% stated that they had signed the organ donor card accompanying their driver''s licence. These respondents were more likely than those who did not sign it to have discussed organ donation with their families. At least 80% of the respondents said they would agree to donate their organs and those of their next-of-kin, and 80% said that the organ donor card should be considered a legal document. Organ transplantation was regarded by all but one respondent as an acceptable medical procedure. Also discussed were concerns about organ donation and possible strategies to improve the availability of organs for transplantation.     

Parental attitudes toward pediatric organ donation: a survey.

We conducted a telephone survey of parents in the National Capital Region to assess their intention to donate their child''s organs and to provide physicians with information that could help alleviate their concerns about approaching parents for consent. Of 339 parents who agreed to answer questions after being given details of their child''s "death" 288 (85%) said that they would be willing to donate their child''s organs. The degree of willingness was associated with the certainty of death, altruism and empathy toward children in need of an organ, previous discussion of organ donation with a family member and knowledge of an adolescent or adult child''s attitude toward donation. Factors that inhibited the intention to donate included uncertainty of death, insufficient information from medical professionals and fear of multilation. The child''s age was not significantly associated with intention to donate. Concordance between the results and actual donation rates in Canada and the United States supports the generalizability of the survey findings.     

The Consequences of Vagueness in Consent to Organ Donation

In this article I argue that vagueness concerning consent to post‐mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chances that the patient's intention to donate will not be fulfilled due to the family's distress. Fourth, the consequent reduction in the number of donated organs leads to avoidable deaths and increased suffering among potential recipients, and distresses them and their families. There are three strategies which could be used to reduce the harmful effects of this vagueness. First, recategorizing the reasons (commonly referred to as ‘overrules’ under the current system) given by families who refuse donation from registered donors would bring greater clarity to donation discussions. Second, people who wish to donate their organs should be encouraged to discuss their wishes in detail with their families, and to consider recording their wishes in other ways. Finally, the consent system for organ donation could be made more detailed, ensuring both that more information is provided to potential donors and that they have more flexibility in how their intentions are indicated; this last strategy, however, could have the disadvantage of discouraging some potential donors from registering.     

Judgments of moral responsibility in tissue donation cases

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.     

Understanding Selective Refusal of Eye Donation

Corneal transplantation is the most common form of organ transplantation performed globally. However, of all organs, eyes have the highest rate of refusal of donation. This study explored the reasons why individuals decide whether or not to donate corneas. Twenty-one individuals were interviewed who had made a donation decision (13 refused corneal donation and eight consented). Analysis was performed using Grounded Theory. Refusal of corneal donation was related to concerns about disfigurement and the role of eyes in memory and communication. The request for donation therefore raised concerns about a potential adverse change in the ongoing relationship with the deceased, even in death. For those who refused donation, these concerns overshadowed awareness of need or benefit of transplantation. Adjusting the donation message to be more congruent with the real, lived experience of corneal donation may to some extent “prepare” individuals when the donation question is raised.     

Families’ reflections on the process of brain donation following coronial autopsy

This study aims to explore families’ reflections on their decision to donate brain tissue to the NSW Tissue Resource Centre (NSW TRC), Australia. Specifically, the study aims to investigate respondents’ initial reactions to the request for donation, primary reasons for their decision, and subsequent satisfaction levels. Participants were next-of-kin (NOK) contacted between May 2002 and May 2008, on the day of their relative’s autopsy, who agreed to donate brain tissue to the NSW TRC for medical research. All 111 NOK were invited to participate, and those who agreed completed an anonymous questionnaire. Fifty completed questionnaires were received. Results showed that 74% of respondents were not upset by the donation call and 98% were satisfied with their decision to donate. Of the 22% who reported having been upset, many indicated that their distress was partly related to their circumstances. When asked the main reason for their donation, 66% had wanted to help others, or help research, while 24% stated their primary reason as a belief that they were respecting the wishes of their deceased relative. These findings show that NOK are not further distressed by being asked to donate brain tissue, give altruistic reasons for consent and are satisfied with the decision they made. In both this study and previous literature, the importance of discussion about organ donation amongst relatives is a recurring theme. Knowledge about a relative’s wishes is likely to help facilitate decision-making, overcoming at least one crucial barrier to lifting rates of organ donation for transplantation and research.     

Trust and the Duty of Organ Donation

Several recent publications in biomedical ethics argue that organ donation is generally morally obligatory and failure to do so is morally indefensible. Arguments for this moral conclusion tend to be of two kinds: arguments from fairness and arguments from easy rescue. While I agree that many of us have a duty to donate, in this article I criticize these arguments for a general duty of organ donation and their application to organ procurement policy. My concern is that these arguments neglect the role that trust plays in contemporary organ transplant policies and in differential rational attitudes toward donation. Recognizing donation as an achievement of trust, and acknowledging the warrant of many people's rational distrust or withheld trust in medicine, I argue, should have significant implications for the ethics of organ procurement.     

A critical approach to the current understanding of Islamic scholars on using cadaver organs without prior permission

Chronic organ diseases and the increasing demand for organ transplantation have become an important health care problem within the last few decades. Campaigns and regulations to encourage people to donate organs after their death have not met much success. This article discusses the subject from an Islamic perspective. It begins with some basic information on how Muslims reach legal rulings on a particular issue, and goes on to debate contemporary thinking among Islamic scholars on the ethical-legal issues of organ donation and organ transplantation.
It is shown that there are two groups of scholars, one allowing organ donation and organ transplantation, the other refusing it in any circumstances. Both groups agree that it is fundamentally wrong to harvest organs from cadavers without the prior permission of the deceased or the relatives. This dogma is re-examined, and it is argued that, under the rule of necessity and the imperative to preserve life, there is enough moral and theological ground to allow the state to harvest organs from the deceased without prior permission.     

Factors that influence decisions by families to donate brain tissue for medical research

Whilst mainstream transplant literature provides valuable insights into the influences on families to donate organs and tissues for transplant, the relevance of these findings in relation to organ donation for research remain speculative. The present study aims to expand the research donation literature, by exploring factors that influence a family’s decision to donate brain tissue to neuroscience research. The verbal responses of the senior available next-of-kin (NOK), to the question of brain donation for research, are analysed. The donation rate was high (54%) over the 5-year-period. NOK relationship to the deceased, and post mortem interval were the main factors associated with a positive donation. Parents were most likely to donate and this may result from a lifetime of decision-making on behalf of the deceased. Also, the longer the interval between death of the potential donor and the question being asked, the greater the likelihood of donation.     

Organ Donation: Who Should Decide?—A Canadian Perspective

This paper examines an under-explored issue in organ donation: whose decision making authority should be privileged posthumously in the context of known, explicit consent for donation? Current practices in Canada support the family as the ultimate decision maker, despite the existence of legislative support in many Canadian provinces for the potential donor as legitimate decision maker. Arguments for and against privileging the family and the potential donor are identified. Informing the question of “who should decide” are considerations of individual and relational autonomy, distributive and social justice, personhood, and arguments “from distress”. Tensions and competing obligations emerge from an exploration of these considerations that call for further, inclusive dialogue and deliberation on this important organ donation issue.     

Can children withhold consent to treatment?

A dilemma exists when a doctor is faced with a child or young person who refuses medically indicated treatment. The Gillick case has been interpreted by many to mean that a child of sufficient age and intelligence could validly consent or refuse consent to treatment. Recent decisions of the Court of Appeal on a child''s refusal of medical treatment have clouded the issue and undermined the spirit of the Gillick decision and the Children Act 1989. It is now the case that a child patient whose competence is in doubt will be found rational if he or she accepts the proposal to treat but may be found incompetent if he or she disagrees. Practitioners are alerted to the anomalies now exhibited by the law on the issue of children''s consent and refusal. The impact of the decisions from the perspectives of medicine, ethics, and the law are examined. Practitioners should review each case of child care carefully and in cases of doubt seek legal advice.     

Childhood malignancies and decision making.

Failure to obtain "adequate" medical care for a child constitutes child neglect, which may be used as the basis for prosecution of parents, removal of the child from the home, or court-ordered medical treatment. "Adequate" care is usually construed as that which is given by a licensed physician, but, in case of dispute, courts almost never engage in choosing one medical approach over another. The principle that parents may not refuse medical care, however, is made very difficult when children have malignancies--the long-term nature of the treatment means that, if the child is left at home, court order or not, the parents may flee with their child. Removing the child from the home, however, adds that trauma to the ill child's burdens. Questions should be asked before making a request to a court to order a therapy which will prolong but not save a child's life if the parents would prefer to spare their child the side effects. Parents, however, may always refuse to permit their child to participate in research studies, no matter how promising. Adolescents are increasingly believed to be capable of medical decision making; most courts, however, would not allow an adolescent to refuse life-saving treatment.     

The child's best interest in gamete donation

Procreation with donor gametes is widespread and commonly accepted, but it involves ethical questions about the child's best interest. Understanding the historical structures of the moral discussion of gamete donation may contribute to reflecting on the child's best interest. This is why I have analysed the debate on gamete donation in the Netherlands, and this analysis has uncovered some striking discontinuities. Notions of the child's best interest have undergone a radical swing. In the past, it was considered acceptable to conceal the truth about the child's biological origin, but in the past two decades the general opinion has changed to the common belief that this information should be shared with the child. This changed notion of the child's best interest will be analysed using a framework encompassing three views of the child, which derive from the debate on children's rights. These three views each provide a different interpretation of the child's moral and political status. I conclude that the changed notion of the child's best interest results from a view of the child that focuses on autonomy and citizenship, and which frames the child's interests according to its legal status. I comment on this view and I champion an alternative one, namely ‘the embedded child’. This is a relational view based on care ethics that goes beyond what can be articulated in law, and that will help to establish a more balanced interpretation of the child's best interest at the practice and policy levels of gamete donation.     

A defense of conscientious objection: Why health is integral to the permissibility of medical refusals

Schuklenk, Smalling, and Savulescu put forth four conditions that delineate when conscientious objection is impermissible. Roughly, they argue for the following claim: if some practice is legal, standard, expected of a profession, and in the patient's interest, then medical professionals cannot refuse to perform the practice. In this essay, I argue that these conditions are not jointly sufficient to deny medical professionals the ability to refuse to perform procedures that detract from a patient's health. They are insufficient to bar medical refusals to perform certain practices because, even when these conditions are met, non-health conducive practices would not be open to refusal by the physician. I provide an example of a non-health conducive practice female genital mutilation, which meets all of the proposed conditions but, intuitively, should be open to medical refusals. As a result, I conclude that the proposed conditions are insufficient to determine when conscientious objection is impermissible. I then offer an amendment to their position by suggesting that a practice, in addition to the other four conditions, must also be health conducive in order to remove the medical professional's ability to refuse to perform the practice.     

Influencing relatives to respect donor autonomy: Should we nudge families to consent to organ donation?

Refusing consent to organ donation remains unacceptably high, and improving consent rates from family or next‐of‐kin is an important step to procuring more organs for solid organ transplantation in countries where this approval is sought. We have thus far failed to translate fully our limited understanding of why families refuse permission into successful strategies targeting consent in the setting of deceased organ donation, primarily because our interventions fail to target underlying cognitive obstacles. Novel interventions to overcome these hurdles, incorporating an understanding of cognitive psychology and behavioral change therapy, may be beneficial. One potential intervention is to use the concept of nudge theory, where decision‐making is influenced by encouraging positive reinforcement and indirect suggestion. Purposefully nudging families to given consent for organ donation by understanding, and then overcoming, their inherent cognitive biases is novel but also controversial. This article explores the roles of relatives in decisions about organ donation, how nudge theory translates to organ donation and discusses the arguments for and against its application.     

Knowledge and opinions about tissue donation and transplantation among Polish students and physicians

The idea of transplantation seems to be commonly identified by lay and professional people only with transplantation of vascularized organs like kidney or heart. The question arises whether there is any awareness of tissue transplantation among the public. A survey was therefore undertaken to assess awareness of and approaches to tissue donation and transplantation among selected social groups. A questionnaire on donation and transplantation issues was administered to respondents from the following groups: secondary school students, non-medical university students, medical university students, physicians. On the whole, 441 non-randomly sampled respondents were surveyed. The awareness of tissue transplantation is narrower than the awareness of organ transplantation. The support for tissue transplantation is weaker than for organ transplantation. This study shows that there is an acute need for education in the legal aspects of transplantation and that ways of motivating healthcare professionals to promote transplantation should be developed.     

Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx)

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one’s whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p?=?.05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p?=?.008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7;?p?=?.006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5;?p?=?.01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.

     

Altruism and Reward: Motivational Compatibility in Deceased Organ Donation

Acts of helping others are often based on mixed motivations. Based on this claim, it has been argued that the use of a financial reward to incentivize organ donation is compatible with promoting altruism in organ donation. In its report Human Bodies: Donation for Medicine and Research, the Nuffield Council on Bioethics uses this argument to justify its suggestion to pilot a funeral payment scheme to incentivize people to register for deceased organ donation in the UK. In this article, I cast a sceptical eye on the above Nuffield report's argument that its proposed funeral payment scheme would prompt deceased organ donations that remain altruistic (as defined by and valued the report). Specifically, I illustrate how this scheme may prompt various forms of mixed motivations which would not satisfy the report's definition of altruism. Insofar as the scheme produces an expectation of the reward, it stands diametrical to promoting an ‘altruistic perspective’. My minimal goal in this article is to argue that altruism is not motivationally compatible with reward as an incentive for donation. My broader goal is to argue that if a financial reward is used to incentivize organ donation, then we should recognize that the donation system is no longer aiming to promote altruism. Rewarded donation would not be altruistic but it may be ethical given a persistent organ shortage situation.     

Legal aspects of genetic information

The federally funded Human Genome Initiative will lead to the development of new capabilities to learn about an individual''s genetic status. Legal issues are raised concerning patients'' and other parties'' access to that information. This article discusses the effect of existing statutes and case law on three pivotal questions: To what sort of information are people entitled? What control should people have over their genetic information? Do people have a right to refuse genetic information? The article emphasizes that the law protects a patient''s right to obtain or refuse genetic information about oneself, as well as the right to control the dissemination of that information to others.     

Development through paper deals: space and politics of value in peri-urban India

The article looks at contestations over space in peri-urban India. It studies the acrimonious responses in defense of a local marketplace that occupied public land against the sovereign project of highway expansion in peri-urban West Bengal. It posits an opposition between two aspects of state governance—rational–legal and magical—that shape the contentions. In the rational–legal mode, the expansion of the highways represents the official development goals of progress. The magical aspects of the state engender the circulation of officially approved illegal chits that give occupying migrant villagers’ claim to the space around the highway. The ethnography looks at the affective economy of illegal chits that political parties and local bureaucracies use to bring migrating villagers within their ambit. It explores how illegal chits embody the state’s legible presence in the villagers’ everyday lives, their kinnetworks, communities and transform individual affective orientations toward space. In these new modes of simultaneous “space” and “place” making, public land is understood less as commons, but more as a stretch that could be divided among individuals and households aspiring to be “developed” or upwardly mobile by excluding others. The essay contends that emergence of the “right to the city” as a collective right requires a double-edged critique. A simple celebration of the subversive potential of the magical aspect of the state vis-à-vis its rational–legal mode may not be helpful for a politics of value that seeks to challenge the idea of value (or what makes life worth living) embedded in the wider neoliberal development discourse.