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

In an effort to solve the shortage of transplantable organs, there have been several proposals to introduce an opt-out approach to deceased organ donation in England. In seeking to enact the so-called ‘opt-out proposal’ via an amendment to the Human Tissue Act 2004, The Organ Donation Bill 2017–19 represents the most recent attempt at such legal reform. Despite popular calls to the contrary, I argue in this paper that it would be premature for England, or, indeed, any country, to adopt (...) an opt-out approach at this time. Not only is the available evidence inconclusive on whether introduction of the opt-out proposal would increase the supply of transplantable organs, but there is also a chance that doing so might bring about an otherwise avoidable moral harm through an unjustified interference with individual autonomy. I maintain that the resources required to change the law to such effect would be better expended on alternative, provenly efficacious and less contentious mechanisms for increasing the supply of transplantable organs, such as: improving communication with the family of the deceased, developing infrastructure, raising public awareness and enhancing staff training, attitudes and understanding towards organ donation. (shrink)

A chief objection to opt-out organ donor registration policies is that they do not secure people's actual consent to donation, and so fail to respect their autonomy rights to decide what happens to their organs after they die. However, scholars have recently offered two powerful responses to this objection. First, Michael B Gill argues that opt-out policies do not fail to respect people's autonomy simply because they do not secure people's actual consent to donation. Second, Ben Saunders argues (...) that opt-out policies do secure people's actual—if not explicit—consent, provided that certain conditions are satisfied. I argue that Gill and Saunders’ arguments are not successful. My conclusion does not imply that jurisdictions should not implement opt-out policies—their failure to secure people's actual consent may be outweighed by other considerations. But, my conclusion does imply that Gill and Saunders are mistaken to claim that opt-out policies are respectful of people's autonomy. (shrink)

Significant differences in perceptions between teachers in primary and secondary grant-maintained schools are reported and analysed. Parents were more frequently involved in promoting opting-out in primary schools, primary teachers had more favourable attitudes to the grant-maintained school policy and, in primary schools, grant-maintained status delivered improvements in classroom conditions, most notably reduced class size and increased para-professional support in classrooms. The findings are discussed in terms of the management of primary schools, of theorising about reputation management in grant-maintained schools, and (...) of the explicit objectives of the grant-maintained policy. It is further suggested that the evidence provided about grant-maintained primary schools could be used to inject new life into a policy faltering in secondary schools. (shrink)

Significant differences in perceptions between teachers in primary and secondary grant-maintained schools are reported and analysed. Parents were more frequently involved in promoting opting-out in primary schools, primary teachers had more favourable attitudes to the grant-maintained school policy and, in primary schools, grant-maintained status delivered improvements in classroom conditions, most notably reduced class size and increased para-professional support in classrooms. The findings are discussed in terms of the management of primary schools, of theorising about reputation management in grant-maintained schools, and (...) of the explicit objectives of the grant-maintained policy. It is further suggested that the evidence provided about grant-maintained primary schools could be used to inject new life into a policy faltering in secondary schools. (shrink)

This paper defends an ‘opt-out’ scheme for organ procurement, by distinguishing this system from ‘presumed consent’ (which the author regards as an erroneous justification of it). It, first, stresses the moral importance of increasing the supply of organs and argues that making donation easier need not conflict with altruism. It then goes on to explore one way that donation can be increased, namely by adopting an opt-out system, in which cadaveric organs are used unless the deceased (or their family) registered (...) an objection. Such policies are often labelled ‘presumed consent’, but it is argued that critics are right to be sceptical of this idea—consent is shown to be an action, rather than a mental attitude, and thus not something that can be presumed. Either someone has consented or they have not, whatever their attitude to the use of their organs. Thankfully, an opt-out scheme need not rest on the presumption of consent. Actual consent can be given implicitly, by one's actions, so it is argued that the failure to register an objection (given certain background conditions) should itself be taken as sign of consent. Therefore, it is permissible to use the organs of someone who did not opt out, because they have—by their silence—actually consented. (shrink)

Deceased organ donation is widely considered as a case of easy rescue―that is, a case in which A may bestow considerable benefits on B while incurring negligent costs herself. Yet, the policy implications of this observation remain unclear. Drawing on Christopher H. Wellman’s samaritan account of political obligations, the paper develops a case for a so-called opt-out system, i.e., a scheme in which people are defaulted into being donors. The proposal’s key idea is that we may arrange people’s options in (...) specific ways for the sake of others. (shrink)

A number of authors criticise opt-out (or ‘deemed consent’) systems for failing to secure valid consent to organ donation. Further, several suggest that mandated choice offers a more ethical alternative. This article responds to criticisms that opt-out does not secure informed consent. If we assume current (low) levels of public awareness, then the explicit consent secured under mandated choice will not be informed either. Conversely, a mandated choice policy might be justifiable if accompanied by a significant public education campaign. However, (...) if this entitles us to assume that members of the public are informed, then an opt-out system would also be justified in the same circumstances. The alleged advantages of mandated choice seem to rest on an unfair comparison, between mandated choice with a public education campaign and an opt-out system without one. While it may be that some countries with opt-out systems should do more to inform their publics, I see no reason to assume that this cannot be done. Indeed, advocates of mandated choice seem committed to thinking it possible to raise awareness. If opt-out systems adopt the same methods, such as writing to every individual, this should also address concerns about whether consent is informed. (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)

Most people accept that if they can save someone from death at very little cost to themselves, they must do so; call this the ‘duty of easy rescue.’ At least for many such people, an instance of this duty is to allow their vital organs to be used for transplantation. Accordingly, ‘opt-out’ organ procurement policies, based on a powerfully motivated responsibility to render costless or very low-cost lifesaving aid, would seem presumptively permissible. Counterarguments abound. Here I consider, in particular, (...) objections that assign a moral distinctiveness to the physical boundaries of our bodies and that concern autonomy and trust. These objections are singled out as they seem particularly pertinent to the stress I place on a distinctive benefit of the particular policy I defend. An opt-out system, resting not on the authority of ‘presumed consent’ but on the recognition of a duty to one another, has the prospect of prompting people to understand more richly the ways in which they are both physically embodied and communally embedded. (shrink)

In this paper, I argue for the following points. First, all of us have a presumptive moral obligation to be organ donors if we are in the relevant medical circumstances at the time of death. Second, family members should not have the right to interfere with the fulfillment of that obligation. Third, the ethical basis for that obligation is reciprocity. If we want a sufficient number of organs available for transplantation, then all must be willing donors. Fourth, that likelihood is (...) diminished if individuals are entirely free to refuse to be organ donors but still would demand to be organ recipients. Fifth, although individuals would be ethically obligated to be organ donors, we still need to permit them to refuse to be organ donors. Sixth, to encourage individuals to stay within the organ donation system, we should have as a just and ethically justified policy denying individuals an organ transplant in the relevant medical circumstances if they have chosen to exit the organ donation system. Individuals would not be permitted to be organ recipients if they were unwilling to be organ donors. This is what it means to be part of what Rawls in Political liberalism (15-22) would refer to as a “fair system of social cooperation.” We refer to this as the “reciprocity requirement.”. (shrink)

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

From all corners of the globe, the on-line revolution is proclaimed. The imperative is to connect; to shop, work, learn, be governed, even fall in love on-line. Government initiatives proliferate globally, stressing the urgency for citizens to become part of the so called Information Society. In the midst of all this euphoria the question must be raised 'Is this opportunity for all, or just a few?' Information and Communication Technologies are being introduced to the teaching and learning process at an (...) increasing pace. E-government ministers are particularly concerned about the 'have-nets' and 'have-nots' in this 'digital revolution'. Our research in schools and the HE sector, looking at women learning on-line, has indicated barriers. We discuss how gendered relations in the home, work and education go far beyond having access to IT. We illustrate how these relations contribute to the shaping of the gendered experiences of using technology in education. So whilst women are urged to get connected, we ask whether or not they will want to use technology as a tool to learn with. We suggest that the current gendered discourse surrounding technology and its use in all areas of society should inform government on-line learning policies globally, cutting through the euphoric hype. (shrink)

This paper looks at the ethics of opt-in vs. opt-out of organ donation as Scotland has transitioned its systems to promote greater organ availability. We first analyse studies that compare the donation rates in other regions due to such a system switch and find that organ increase is inconclusive and modest at best. This is due to a lack of explicit opt-out choices resulting in greater resistance and family override unless there are infrastructures and greater awareness to support such change. (...) The paper then looks at the difference between informed consent of the opt-in vs. presumed consent in the opt-out approaches. Patient autonomy and dignity are better reflected with informed consent. Eighteen months have passed since the new organ donation policy has come into effect, this paper recommends more research into organ donors’ psychological motivations to help governments and the healthcare profession obtain more organs for transplantation. (shrink)

Background and purpose Changes to deceased organ donation policy in the USA, including opt-out and priority systems, have been proposed to increase registration and donation rates. To study attitudes towards such policies, we surveyed healthcare students to assess support for opt-out and priority systems and reasons for support or opposition. Methods We investigated associations with supporting opt-out, including organ donation knowledge, altruism, trust in the healthcare system, prioritising autonomy and participants’ evaluation of the moral severity of incorrectly assuming consent (...) in opt-in systems or opt-out systems, by conducting an online survey among healthcare students at a large academic institution. Results Of 523 respondents, 86% supported opt-out, including 53% who strongly supported the policy. The most popular reason for supporting opt-out was the potential for increased donation rates, followed by convenience for those not registered but willing to donate. The most popular reason for opposing opt-out was the belief that presuming consent is morally wrong. Those strongly supporting opt-out viewed the opt-in error as more morally unacceptable, and had higher knowledge and altruism scores. Those opposing opt-out viewed the opt-out error as more unacceptable, and had higher autonomy scores. 48% of respondents supported priority within opt-in systems; 31% supported priority in opt-out. Conclusions There is strong support for opt-out organ donation among healthcare students, influenced by both practical and moral considerations. (shrink)

BackgroundPrevention of mother to child transmission of HIV remains a key public health priority in most developing countries. The provider Initiated Opt – Out Prenatal HIV Screening Approach, recommended by the World Health Organization lately has been adopted and translated into policy in most Sub – Saharan African countries. To better ascertain the ethical reasons for or against the use of this approach, we carried out a literature review of the ethics literature.MethodsPapers published in English and French Languages between 1990 (...) and 2015 from the following data bases were searched: Pubmed, Cochrane literature, Embase, Cinhal, Web of Science and Google Scholar. After screening from 302 identified relevant articles, 21 articles were retained for the critical review.DiscussionMost authors considered this approach ethically justifiable due to its potential benefits to the mother, foetus and society. The breaching of respect for autonomy was considered acceptable on the grounds of libertarian paternalism. Most authors considered the Opt - Out approach to be less stigmatizing than the Opt - In. The main arguments against the Opt - Out approach were: non respect of patient autonomy, informed consent becoming a meaningless concept and the HIV test becoming compulsory, risk of losing trust in health care providers, neglect of social and psychological implications of doing an HIV test, risk of aggravation of stigma if all tested patients are not properly cared for and neglect of sociocultural peculiarities.ConclusionsThe Opt – Out approach could be counterproductive in case gender sensitive issues within the various sociocultural representations are neglected, and actions to offer holistic care to all women who shall potentially test positive for HIV were not effectively ascertained. The Provider Initiated Opt – Out Prenatal HIV Screening option remains ethically acceptable, but deserves caution, active monitoring and evaluation within the translation of this approach into to practice. (shrink)

One new development in the ongoing creationism/ evolution controversy has been the proposal to institute optout policies that would allow creationist parents to exempt their children from any instruction involving evolution. By way of an explanation of some of the philosophical issues at play in the debate over evolution and the nature of science, this article shows the educational folly of such policies. If evolution is taught properly, it should not be possible to opt out of it without (...) opting out of biology. Moreover, if Intelligent Design creationist criticisms of evolution and scientific naturalism were taken as the basis for opting out, then the effect would be even more radical and would require opting out of science entirely. (shrink)

All four UK nations have, in recent years, introduced “opt out” organ donation systems. Whilst these systems are largely similar, they operate independently. A key feature of each policy is a residency requirement, stipulating that opt out may only apply where the deceased had been ordinarily resident in that nation for at least 12 months. A resident of Scotland who dies in England, for example, would not fall under opt out. Public awareness is the underlying reasoning for such stipulations. A (...) residency requirement was appropriate when Wales was the only UK nation with an opt out system, but, I suggest, the continued imposition of intra-UK borders on organ donation is unjustified now that all four nations operate the same policy. Further, it has the potential to limit organ donation. There is a need for all four systems to be amended to allow for UK-wide applicability, such that providing the deceased was ordinarily resident in the UK, they can fall under opt out in any of the four nations. I argue that such an amendment is ethically justified – continuing to satisfy the public awareness criterion – and practically straightforward. In doing so, I emphasise that my proposed amendment should extend only to the four UK nations, stopping short of the Crown Dependencies even though they also operate opt out systems for organ donation. (shrink)

The diagnosis of HIV infection is the point of entry for treatment and prevention services, yet many infected persons in both developed and developing countries remain undiagnosed. To reduce the number of undiagnosed infections, a variety of expanded testing policies have been recommended, including opt-out testing. This testing model assumes that in populations of increased HIV prevalence, voluntary testing should be offered to all patients seen in healthcare settings and performed unless patients specifically decline. While this approach raises ethical (...) issues concerning “voluntariness”, access to care, and stigma, the potential benefits of opt-out testing far outweigh its potential adverse effects. (shrink)

This paper takes as its starting point the special provision made for grant maintained schools through the 1998 School Standards and Framework Act and suggests that the compromise it represented may be considered as an example of New Labour's Third Way in politics. The latter is discussed in terms of general and educational policies with specific regard to the characteristics of self-governing schools.

Little is known about how gendered understandings of patients can inform professionals’ discretionary actions and decisions to include or exclude in clinical practice. Using Connell's poststructuralist perspectives on gender as an analytic framework, this article aims to investigate how professionals’ articulations of depression are framed by signs of masculinity and femininity, and how these articulations inform service provision to patients with depression in clinical psychiatry. Building on interview data drawn from an ethnographic study, the article shows how the professionals’ articulations (...) reflected a gender binary that framed how the feminized patients were often connected to psychiatric care while masculinized patients were referred to separate alcohol or substance use treatment outside the psychiatric institution. The article discusses the societal and institutional conditionality of gendered understandings in psychiatry. In spite of several limitations, the article elucidates how professionals’ understandings might have wide‐ranging implications for the accuracy of epidemiological research and policy, and how they reflect a power struggle between patients and professionals about the legitimate right to interpret patients’ conditions and efforts to manage their illness‐related problems. (shrink)

In this chapter, we provide an overview of the ethical considerations relevant to the use of nudges in organ donation policy. We do not defend a position on the permissibility of nudging in this context, but instead aim to clearly outline the strongest arguments on the different sides of this issue that have been presented in the English-language scholarly bioethics literature. We also highlight the questions that are in need of further investigation. In part 1, we briefly discuss nudging before (...) considering proposals to use nudges to increase the number of registered organ donors, including opt-out donor registration systems and the use of “nudge statements.” In part 2, we discuss the use of nudges to influence the decision-making of family members in circumstances where they have a veto over the donation of their loved one’s organs. (shrink)

In the context of organ donation and transplantation, societies are facing an increasing shortage. Several policies have been developed for the overcoming of such a deficit, mainly 'Opting-In', 'Opting-Out', and 'Required Request'. We believe that, as regards this opting between social policies for harvesting, moral theology has an opinion to share with other thinkers and with the decision-makers of our society. In order to present our Christian view, we start with considering the reasons that make us capable of (...) using the remains of a human person after death, the corpse. We see how every human being holds a right for respect of the remains of his/her former body, the corpse, but other human beings with equal dignity may be compelled to use those remains when their right at stake is of a higher rank, even in case that use goes against the due respect. In this line of thought two moral principles will be sorted out, showing the axis of our evaluation of the different policies, namely the 'benefit of the patients in need of transplantation' and a threefold 'consent', the consent of the deceased, the consent of his/her family, and the consent of his/her society. Analyzing the main strategies for harvesting transplantable organs currently applied through this set of criteria, we see how a sort of 'Routine Salvaging' and a type of 'Informed-Consent' in which we do not perform a wide campaign of education and conscientization, are to be rejected. The remaining types of policies were to be evaluated in each case. We position ourselves in favor of the 'Required Request', holding that it is preferable to ask the question directly than to presume any sort of behavior, whether it be for or against donation. Secondly, we consider that policies following the 'Opting-Out' style may obtain a higher degree of moral righteousness than the ones based on an 'Opting-In policy. In each of them, however, nuances are to be stressed and complementary systems developed, up to the point in which none of them can be enforced alone. (shrink)

Governments must determine the legal procedures by which their residents are registered, or can register, as organ donors. Provided that governments recognize that people have a right to determine what happens to their organs after they die, there are four feasible options to choose from: opt-in, opt-out, mandated active choice, and voluntary active choice. We investigate the ethics of these policies' use of nudges to affect organ donor registration rates. We argue that the use of nudges in this context (...) is morally problematic. It is disrespectful of people's autonomy to take advantage of their cognitive biases since doing so involves bypassing, not engaging, their rational capacities. We conclude that while mandated active choice policies are not problem free—they are coercive, after all—voluntary active choice, opt-in, and opt-out policies are potentially less respectful of people's autonomy since their use of nudges could significantly affect people's decision making. (shrink)

Taking organs from dead people seems, prima facie, to raise fewer ethical complications than taking organs from other sources. There are, however, serious ethical problems in taking organs from the dead unless there is premortem evidence that this is what the deceased would have wanted, or at least, not have objected to. In this paper we will look at a “strong” opting out policy as proposed by John Harris. We will argue that people can be harmed after their death and (...) that the posthumous removal of organs against their expressed wishes is one form that such harm might take. We also argue that Harris’s claim that we show “equality of concern” between the donor and recipient requires too much. (shrink)

Background Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries. -/- Methods Between 2017–2019, we conducted a convenience sample survey of students (n = 2006) (...) in Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems. -/- Results Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support–either informed or uninformed–in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence–either informed or uninformed–among opt-out countries. -/- Conclusion Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data. (shrink)

This study is a contribution to Chinese-Western dialogue of bioethics but perhaps the first one of its kind. From a Chinese-Western comparative ethical perspective, this work brings Chinese ethical theories, especially Confucian ethics, into a contemporary context of the epidemic of HIV/AIDS, and to see how the deeply-rooted thoughts of Confucius interact, compete, or integrate with concepts from Western ethical traditions. An underlying belief is that some ideas in Confucian ethics are important and insightful beyond their cultural and historical origins (...) in China and other Confucianism influenced societies.Methodologically, this thesis employs two approaches, conceptual normative analysis combined with critical interpretation. The ‘interpretive’ approach I employ, as an important methodology supplementing my normative analysis, not only deals with Chinese ancient texts, but also explains specific beliefs and practices in China.With a critical eye, this thesis carefully examines a number of key topics in the ethics of AIDS in China from a cross-cultural perspective. Topics including: views on personhood and the vulnerability of People Living with HIV/AIDS; prioritising and balancing the role of ‘harm reduction’ and the role of ‘eradication of deviant behaviour’ in AIDS policy in China; rights-based opt-out approach and duty-based family-centred approach in HIV testing and Biobanking; blood donation; moral responsibility and personal responsibility for health; and the popular rhetoric of ‘innocent infection’ versus ‘guilty infection’ in AIDS. My overall aim in this work is to present a cross-cultural bioethics study through the investigation of some ethical issues in AIDS in China from a Chinese-Western comparative perspective and also attempt to suggest a humane and effective policy for HIV/AIDS which I believe is appropriate to both traditions. I believe this work has contributed to our knowledge in three related but independent areas: the control of the epidemic of HIV/AIDS in China; medical ethics in China; and to both the methods and the utility of cross-cultural study of bioethics between China and the West. (shrink)

MacKay and Robinson (2016) claim that some legal procedures that regulate organ donations (VAC, opt-in, opt-out) bypass people's rational capacities and thus are “potentially morally worse than MAC”, which only employs a very mild form of coercion. We provide a critique of their argumentation and defend the opposite thesis: MAC is potentially morally worse than the three other options.

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

Much has been written about the global convergence on constitutional supremacy. Yet, a closer look suggests that while constitutional convergence trends are undoubtedly extensive and readily visible, expressions of constitutional resistance or defiance may in fact be regaining ground worldwide. This may point to a paradox embedded in global constitutionalism: the more expansive constitutional convergence trends are, the greater the likelihood of dissent and resistance are. In this article, I chart the contours of three aversive responses to constitutional convergence: neo-secessionism, (...) nullification, and deference to local authority, and draw on an array of comparative examples to illustrate the distinct logic and characteristics of each of these responses. Taken together, these increasingly common expressions of defiance provide ample evidence that global constitutionalism is not the only game in town. Neo-secessionism, nullification, and other forms of constitutional dissent and “opting out” may thus be viewed as a reaction against the centralization of authority and the decline of the local in an increasingly—constitutionally and otherwise—universalized reality. (shrink)

In this reply to Wilkinson and De Wispelaere, I argue that an opt-out donation system can be regarded as tacit consent. I first separate the opt-in/opt-out issue from that of the role that the family ought to play. I then argue that what De Wispelaere calls minimal approval-tracking is not obviously necessary and that, even if it were, opt-out schemes can satisfy this requirement.

We live in a liberal, pluralistic, largely secular society where, in theory, there is fundamental protection for freedom of conscience generally and freedom of religion in particular. There is, however, both in statute and common law, increasing pressure on religious believers and conscientious objectors to act in ways that violate their sincere, deeply held beliefs. This is particularly so in health care, where conscientious objection is coming under extreme pressure. I argue that freedom of religion and conscience need to be (...) put on a sounder footing both legislatively and by the courts, particularly in health care. I examine a number of important legal cases in the UK and US, where freedom of religion and conscience have come into conflict with government mandates or equality and anti-discrimination law. In these and other cases we find one of two results: either the conscientious objector loses out against competing rights, or the conscientious objector succeeds, but due to what I consider unsound judicial reasoning. In particular, cases involving cooperation in what the objector considers morally impermissible according to their beliefs have been wrongly understood by some American courts. I argue that a reasonable theory of cooperation incorporated into judicial thinking would enable more acceptable results that gave sufficient protection to conscientious objectors without risking a judicial backlash against objectors who wanted to take their freedoms too far. I also venture into broader, more controversial waters concerning what I call freedom of dissociation – the fundamental right to withdraw from associating with people, groups, and activities. It is no more than the converse of freedom of association, which all free societies recognise as a basic right. How far should freedom of dissociation go? What might society be like if freedom of dissociation were given more protection in law than it currently has? It would certainly give freedom of religion and conscience a substantial foundation, but it could also lead to discriminatory behaviour to which many people would object. I explore some of these issues, before going back to the narrower area of freedom of conscience and religion in health care, making some proposals about how the law could strengthen these basic pillars of a liberal, free society. (shrink)

Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to conducting research on individuals who opted out of living kidney donation and applied it in a small-scale qualitative study at one US transplant centre. The seven study participants had varied reasons for opting out, the most prominent of which was concern about the financial burden from lost wages during the postoperative (...) period. Several reported feeling alone during their decision-making process. Although no participants used an alibi, a centre-provided statement of non-eligibility to donate, all believed that centres should offer alibis to help preserve donor autonomy. Given the complexity of participants' decisions and the emotions they experienced before and after deciding not to donate, we suggest approaches for independent living donor advocates to support this population. This study demonstrates that research on individuals who opt out of donation is feasible and yields valuable insight into methods to improve the evaluation experience for potential living donors. (shrink)

The Organ Donation Act 2019 has introduced an opt-out organ donor register in England, meaning that consent to the donation of organs upon death is presumed unless an objection during life was actively expressed. By assessing the rights of the dead over their organs, the sick to those same organs, and the role of consent in their requisition, this paper interrogates whether such paradigms for deceased organ donation are ethically justifiable. Where legal considerations are applicable, I focus on the recent (...) changes in England as a case in point; however, this paper ultimately challenges the justifiability of opt-out systems in any form, concluding that ethical solutions to organ shortage do not lie in opt-out systems of deceased organ procurement. (shrink)

As the HIV epidemic continues to grow worldwide, women are increasingly and disproportionally affected. With the introduction of anti-retroviral medications that have been found to effectively prevent perinatal transmission of HIV, the approach to HIV testing in pregnant women has grown increasingly more controversial. In recent years, the model of voluntary counseling and testing (VCT) has come into question with opt-out testing now advocated for by the Centers for Disease Control and occurring widely in pregnancy. The benefits of opt-out testing (...) are numerous and may justify its use in replacing the VCT that many have come to see as insufficient. An ethical analysis of opt-out testing suggests it may be at odds with true informed consent and involve a degree of coercion that would not be allowed outside the prenatal setting. If opt-out testing is going to remain the standard of care then the ethical issues it raises must be made transparent. Strategies need to be designed for ensuring that HIV counseling and testing in pregnancy is done in accordance with ethical and reproductive rights principles. (shrink)

We live in a liberal, pluralistic, largely secular society where, in theory, there is fundamental protection for freedom of conscience generally and freedom of religion in particular. There is, however, both in statute and common law, increasing pressure on religious believers and conscientious objectors (outside wartime) to act in ways that violate their sincere, deeply held beliefs. This is particularly so in health care, where conscientious objection is coming under extreme pressure. I argue that freedom of religion and conscience need (...) to be put on a sounder footing both legislatively and by the courts, particularly in health care. I examine a number of important legal cases in the UK and US, where freedom of religion and conscience have come into conflict with government mandates or equality and anti-discrimination law. In these and other cases we find one of two results: either the conscientious objector loses out against competing rights, or the conscientious objector succeeds, but due to what I consider unsound judicial reasoning. In particular, cases involving cooperation in what the objector considers morally impermissible according to their beliefs have been wrongly understood by some American courts. I argue that a reasonable theory of cooperation incorporated into judicial thinking would enable more acceptable results that gave sufficient protection to conscientious objectors without risking a judicial backlash against objectors who wanted to take their freedoms too far. -/- I also venture into broader, more controversial waters concerning what I call freedom of dissociation – the fundamental right to withdraw from associating with people, groups, and activities. It is no more than the converse of freedom of association, which all free societies recognise as a basic right. How far should freedom of dissociation go? What might society be like if freedom of dissociation were given more protection in law than it currently has? It would certainly give freedom of religion and conscience a substantial foundation, but it could also lead to discriminatory behaviour to which many people would object. I explore some of these issues, before going back to the narrower area of freedom of conscience and religion in health care, making some proposals about how the law could strengthen these basic pillars of a liberal, free society. (shrink)

One way of increasing the supply of organs available for transplant would be to switch to an opt-out system of donor registration. This is typically assumed to operate on the basis of presumed consent, but this faces the objection that not all of those who fail to opt out would actually consent to the use of their cadaveric organs. This paper defuses this objection, arguing that people's actual, explicit or implicit, consent to use their organs is not needed. It borrows (...) David Estlund's notion of ‘normative consent’ from the justification of political authority and applies it to the case of organ donation. According to this idea, when it is wrong to withhold consent to something, the moral force of that lack of consent may be null and void. If it is wrong of a person to refuse to donate their cadaveric organs to others, then it may be that their actual consent is not needed. This supports an opt-out system, which provides protection for those who have genuine reasons to refuse donation, and spares the worries as to what the deceased would actually have wanted. (shrink)

As the debate over an English opt-out policy for organ procurement intensifies, assessing existing experiences becomes even more important. The Welsh introduction of opt-out legislation provides one important point of reference. With the introduction of deemed consent in December 2015, Wales became the first part of the UK to introduce an opt-out system in organ procurement. My article ‘Deemed consent: assessing the new opt-out approach to organ procurement in Wales’ conducted an early assessment of this.1 Taking its starting point in (...) important concerns often raised in discussion over opt-out legislation, it identified four key parameters to assess the effects. These are living donor rates, deceased donor rates, donor registrations and family refusals. My article compares these indicators before and after the enactment of the Welsh legislation employing a different-in-different design. In his reply to my article ‘Deemed consent: assessing the new opt-out approach to organ procurement in Wales’, Jordan Alexander Parsons offers two interesting critiques. The first pertains to the choice of indicators. Parsons prefer a narrower focus on the effect on deceased donor rates. The second pertains to the choice of data, Parsons preferring a time series of Wales to my different-in-different design. Parsons refers mainly to the official Welsh evaluation,2 a report I also cited in supplement to the NHS Activity Report data I employed. …. (shrink)

Supporters of opt‐in organ procurement policies typically claim that the absence of consent to postmortem transplantable organ retrieval is a normative barrier to such retrieval. On this ground, justification of opt‐out policies is demanded. The paper shows that postmortem organ retrieval is normatively different from live organ removal, and so the doctrine of informed consent does not apply to it in the way it does in other types of cases. First, seen as the instrument of protection of autonomy (...) or the right to self‐determination, informed consent cannot be relied on in the case of dead persons; secondly, viewed as an instrument of annulment of harm or wrong to the dead (volenti non fit injuria), informed consent relies on indefensible accounts of posthumous harm or wrong. Postmortem organ retrieval in cases of absence of the decedent's consent and refusal is governed by other norms than those related to consent. Such norms include, among others, respectful treatment of human remains (such as those found in regulations of medicine, law enforcement, and research) and avoidance of inherently wrong contexts and purposes (such as killing for the purpose of organ retrieval or trade in the human body or its parts). It is concluded that the onus probandi is on the supporters of opt‐in, rather than opt‐out, policies of posthumous organ retrieval. (shrink)

Volume 25, Issue 3, September 2019, Page 283-286.

The General Data Protection Regulation (GDPR) was introduced in 2018 to harmonize data privacy and security laws across the European Union (EU). It applies to any organization collecting personal data in the EU. To date, service-level consent has been used as a proportionate approach for clinical trials, which implement low-risk, routine, service-wide interventions for which individual consent is considered inappropriate. In the context of public health research, GDPR now requires that individuals have the option to choose whether their data may (...) be used for research, which presents a challenge when consent has been given by the clinical service and not by individual service users. We report here on development of a pragmatic opt-out solution to this consent paradox in the context of a partner notification intervention trial in sexual health clinics in the UK. Our approach supports the individual’s right to withhold their data from trial analysis while routinely offering the same care to all patients. (shrink)