BackgroundNational guidelines require programmes use subjective assessments of social support when determining transplant suitability, despite limited evidence linking it to outcomes. We examined how transplant providers weigh the importance of social support for kidney transplantation compared with other factors, and variation by clinical role and personal beliefs.MethodsThe National survey of the American Society of Transplant Surgeons and the Society of Transplant Social Work in 2016. Using a discrete choice approach, respondents compared two hypothetical patient profiles and selected one for transplantation. (...) Conditional logistic regression estimated the relative importance of each factor; results were stratified by clinical role and beliefs.ResultsFive hundred and eighy-four transplant providers completed the survey. Social support was the second most influential factor among transplant providers. Providers were most likely to choose a candidate who had social support, always adhered to a medical regimen, and had a 15 years life expectancy with transplant. Psychosocial providers were more influenced by adherence and quality of life compared with medical/surgical providers, who were more influenced by candidates' life expectancy with transplant. For providers concerned with avoiding organ waste, social support was the most influential factor, while it was the least influential for clinicians concerned with fairness.ConclusionsSocial support is highly influential in listing decisions and may exacerbate transplant disparities. Providers’ beliefs and reliance on social support in determining suitability vary considerably, raising concerns about transparency and justice. (shrink)

In her excellent and comprehensive article, Friesen argues that utilising personal responsibility in healthcare is problematic in several ways: it is difficult to ascribe responsibility to behaviour; there is a risk of prejudice and bias in deciding which behaviours a person should be held responsible for; it may be ineffective at reducing health costs. In this short commentary, I will elaborate the critique of personal responsibility in health but suggest one way in which it could be used ethically. In doing (...) so, I will introduce the concepts of reasonable risk and golden opportunity. I previously argued that it is both difficult to disentangle responsibility and that we risk prejudice and bias in singling out behaviours that are socially disapproved of.1 So I am sympathetic to Friesen’s concerns. I also discussed another way in which ascribing personal responsibility for health is problematic which Friesen does not discuss and which, in my view, is the most concerning and further supports her arguments. It represents a back door assault on liberalism and neutrality towards concepts of the good life. Even if one were to accurately and in an unbiased way divine the personal contribution to disease, the greatest problem would remain: those who voluntarily take on risk would be penalised. That is, such a system would be risk-averse. Those lives which avoided risk would be prioritised, while those who chose to take on risky activities in their conception of the good life would be penalised. Yet risk is necessary, both for the good life, and social progress. Columbus, Edmund Hilary, Florence Nightingale, Ernest Hemingway and countless monumental figures in human history took risks in order to achieve something great. Should we aim for a society of trembling, teetotalling health nuts? Surely that prospect is horrific. It is horrific because it elevates health …. (shrink)

Combatting chronic, lifestyle-related disease has become a healthcare priority in the developed world. The role personal responsibility should play in healthcare provision has growing pertinence given the growing significance of individual lifestyle choices for health. Media reporting focussing on the ‘bad behaviour’ of individuals suffering lifestyle-related disease, and policies aimed at encouraging ‘responsibilisation’ in healthcare highlight the importance of understanding the scope of responsibility ascriptions in this context. Research into the social determinants of health and psychological mechanisms of health behaviour (...) could undermine some commonly held and tacit assumptions about the moral responsibility of agents for the sorts of lifestyles they adopt. I use Philip Petit's conception of freedom as ‘fitness to be held responsible’ to consider the significance of some of this evidence for assessing the moral responsibility of agents. I propose that, in some cases, factors outside the agent's control may influence behaviour in such a way as to undermine her freedom along the three dimensions described by Pettit: freedom of action; a sense of identification with one's actions; and whether one's social position renders one vulnerable to pressure from more powerful others. (shrink)

The recent tragic and widely publicised death of Jesse Gelsinger in a gene therapy trial has many important lessons for those engaged in the ethical review of research. One of the most important lessons is that ethics committees can give too much weight to ensuring informed consent and not enough attention to minimising the harm associated with participation in research. The first responsibility of ethics committees should be to ensure that the expected harm associated with participation is reasonable. Jesse was (...) an 18-year-old man with a mild form of ornithine transcarbamylase (OTC) deficiency, a disorder of nitrogen metabolism. His form of the disease could be controlled by diet and drug treatment. On September 13 1999 a team of researchers lead by James Wilson at the University of Pennsylvania's Institute for Human Gene Therapy (IHGT) injected 3.8 X 1013 adenovirus vector particles containing a gene to correct the genetic defect. He was the eighteenth and final patient in the trial. The virus particles were injected directly into the liver. He received the largest number of virus particles in a gene therapy trial.1 Four days later he was dead from what was probably an immune reaction to the virus vector. This was the first death directly attributed to gene therapy. It resulted in worldwide publicity, an independent investigation, the Federal Drug Administration (FDA) suspending all trials at the IHGT, an FDA, and a senate subcommittee investigation. At a special public meeting at the National Institutes of Health (NIH) in December 1999, James Wilson, also the director of the IHGT, said they still did not understand fully what had gone wrong.2 Even though a massive dose had been used, only 1% of transferred genes reached the target cells. (None of the patients in the trial showed significant gene expression. Art …. (shrink)

Organ allocation policy involves a mixture of ethical, scientific, medical, legal, and political factors, among others. It is thus hard, and perhaps even impossible, to identify and fully separate ethical considerations from all these other factors. Yet I will focus primarily on the ethical considerations embedded in the current debate in the United States about organ allocation policy. I will argue that it is important to putpatientsfirstbut even then significant ethical questions will remain about exactly how to put patients first.

abstract This article defends luck egalitarianism as an interpretation of the egalitarian ideal against two major criticisms levelled against it by Elizabeth Anderson — that it is trapped in the distributive paradigm, and that it treats the victims of bad option luck too harshly to be considered an egalitarian theory. Against the first criticism, I argue that luck egalitarianism will condemn non‐material inequalities and injustices if an appropriate conception of well‐being is adopted. I demonstrate this by showing how the approach (...) is sensitive to the five faces of oppression developed by Iris Young. Although the second criticism is more troubling, it does not defeat luck egalitarianism, either. I will show that few of the inequalities that arise in the real world result from option luck. Further, if cases do occur, rather than abandoning the theory, the best response is to combine luck egalitarianism with another egalitarian principle that will ensure that the basic needs of all citizens are satisfied. The paper concludes by defending the appeal of the distinction between option luck and brute luck, in light of the preceding discussion. (shrink)

Allograft shortage is a formidable obstacle in organ transplantation. Xenotransplantation, the interspecies transplantation of cells, tissues, and organs, or ex vivo interspecies exchange between cells, tissues, and organs is a frequently suggested alternative to this allograft shortage. As xenotransplantation steadily improves into a viable allotransplantation alternative, several bioethical considerations coalesce. Such considerations include the Helsinki declaration’s guarantee of patients’ rights to privacy; political red tape that may select for undermined socioeconomic groups as the first recipients of xenografts; industry incentives in (...) xenotransplantation investments; conflicts of interest when a clinician supervises a patient as a research subject; the psychosocial impact of transplantation on the xenograft recipient, and the rights of animals. This review illuminates these issues through a conglomeration of expert opinion and relevant experimental studies. (shrink)