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)

Almost 60,000 people in the United States with end stage renal disease are waiting for a kidney transplant. Because of the scarcity of organs from deceased donors live kidney donors have become a critical source of organs; in 2001, for the first time in recent decades, the number of live kidney donors exceeded the number of deceased donors. The paradigm used to justify putting live kidney donors at risk includes the low risk to the donor, the favorable risk-benefit ratio, the (...) psychological benefits to the donor, altruism, and autonomy coupled with informed consent; because each of these arguments is flawed we need to lessen our dependence on live kidney donors and increase the number of organs retrieved from deceased donors. An "opting in" paradigm would reward people who agree to donate their kidneys after they die with allocation preference should they need a kidney while they are alive. An "opting in" program should increase the number of kidneys available for transplantation and eliminate the morally troubling problem of "organ takers" who would accept a kidney if they needed one but have made no provision to be an organ donor themselves. People who "opt in" would preferentially get an organ should they need one at the minimal cost of donating their kidneys when they have no use for them; it is a form of organ insurance a rational person should find extremely attractive. An "opting in" paradigm would simulate the reciprocal altruism observed in nature that sociobiologists believe enhances group survival. Although the allocation of organs based on factors other than need might be morally troubling, an "opting in" paradigm compares favorably with other methods of obtaining more organs and accepting the status quo of extreme organ scarcity. Although an "opting in" policy would be based on enlightened self-interest, by demonstrating the utilitarian value of mutual assistance, it would promote the attitude that self-interest sometimes requires the perception that we are all part of a common humanity. (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)

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)

Almost 60,000 people in the United States with end stage renal disease are waiting for a kidney transplant. Because of the scarcity of organs from deceased donors live kidney donors have become a critical source of organs; in 2001, for the first time in recent decades, the number of live kidney donors exceeded the number of deceased donors. The paradigm used to justify putting live kidney donors at risk includes the low risk to the donor, the favorable risk-benefit ratio, the (...) psychological benefits to the donor, altruism, and autonomy coupled with informed consent; because each of these arguments is flawed we need to lessen our dependence on live kidney donors and increase the number of organs retrieved from deceased donors. An “opting in” paradigm would reward people who agree to donate their kidneys after they die with allocation preference should they need a kidney while they are alive. An “opting in” program should increase the number of kidneys available for transplantation and eliminate the morally troubling problem of “organ takers” who would accept a kidney if they needed one but have made no provision to be an organ donor themselves. People who “opt in” would preferentially get an organ should they need one at the minimal cost of donating their kidneys when they have no use for them; it is a form of organ insurance a rational person should find extremely attractive. An “opting in” paradigm would simulate the reciprocal altruism observed in nature that sociobiologists believe enhances group survival. Although the allocation of organs based on factors other than need might be morally troubling, an “opting in” paradigm compares favorably with other methods of obtaining more organs and accepting the status quo of extreme organ scarcity. Although an “opting in” policy would be based on enlightened self-interest, by demonstrating the utilitarian value of mutual assistance, it would promote the attitude that self-interest sometimes requires the perception that we are all part of a common humanity. (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)

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)

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)

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)

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)

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)

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)

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)

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)

In science policy, public controversy around synthetic biology has often been presented as a major risk because it could deter innovation. The following inter-related strategies for avoiding contestation have been observed: There have been attempts to close down debates by alluding to the importance and legitimacy of reliance on scientific evidence as input to regulatory processes. Scientific policy advice has stressed sufficiency of existing regulation, economic risks of additional regulation and/or suggestions for monitoring that are limited in scope. Initiatives for (...) self-governance have narrowed the scope of topics for consideration. Engagement with humanities, social sciences and arts has been co-opted for legitimisation and science communication. Although such agendas are of course not ubiquitous, in this paper, I criticise that instrumentally motivated engagement has been supported not only by the scientific community but also by policy institutions and funding bodies. I argue that it is good that this now seems to fuel controversy in the academic and policy realms. As synthetic biology is not the only technoscientific field to see such dynamics, this is also part of the broader context of debate about the governance of science, especially the concept of “responsible research and innovation” currently promoted in the EU. (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)

Documenting how the Japanese state responded to increasing social discontent during initiation of unpopular welfare reforms, this study examines the factors that hindered the political empowerment of civil society despite the timely introduction of participatory policymaking institutions. The Japanese government opted in the early 2000s to introduce a participatory method to initiate the unpopular pension reform. Deliberation councils were established to encourage open discussions among government policymakers and committee members, including citizen representatives. The final outcomes of the deliberations, however, were (...) mostly about parametric adjustments and did not adequately consider the urgent demand of the general public. The participatory measure did not significantly improve the public's trust in the pension programs, but it did justify the government's reform initiatives. The welfare bureaucracy that set the goal, defined the scope of the agenda, and steered the discussions toward technical issues structurally restricted the voices of the citizen members in the deliberation councils. The lack of citizen advocacy groups, which could otherwise have effectively supported the citizen members on the committee, contributed to the limited roles and influences of the citizens. It is argued that the traditional conservative corporatism of Japan was reinforced during this time period, despite the introduction of the idea of participatory governance. (shrink)

This article explores the question of the efficacy of state-level food sovereignty projects for democratizing local control over food systems by examining the case of Nicaragua, where the Ortega administration adopted food sovereignty into policy. The main task of food sovereignty is to transform the power relations that govern food systems. This article builds on the previous work of food sovereignty scholars by arguing that devolving power to local territories is necessary but insufficient for deepening democracy, and rather must be (...) coupled with broader transformations in state-society relations. In particular, it argues that how power is exercised in different sites and scales of decision-making is critical for gauging the extent to which local democratic control of food systems is realized. This study examines the implementation of two models of food governance that emerged in Nicaragua in the years immediately following Ortega’s election in 2007. It finds that while the two models created opportunities to deepen democracy, the state’s lack of support for autonomous citizen mobilization and their attempts to co-opt spaces for participatory democratic governance have strongly contributed to the failure of these mechanisms to enhance local control over food systems. (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)

This book approaches the problems and circumstances confronting blacks in the context of black values, the black community, and the role of government. ^BContents:: The Black Community's Values as a Basis for Action; The Community as Agent of Change; and The Government's Role in Meeting New Challenges.

Public health is concerned with how to improve the population’s health. At times, though, actions to improve the community’s health may collide with individual civil rights. For example, a public health response to a bioterrorism attack, such as smallpox, may require relaxing an individual’s due process protections to prevent the smallpox from spreading. This tension lies at the heart of public health policy. It also must be considered in discussing the concept of human rights in health.Proponents of incorporating the concept (...) of human rights in health emphasize the importance of both individual rights and collective rights. They argue that observing human rights is not only consistent with broad public health goals, but necessary to their attainment. To many human rights advocates, the concept is not limited to protecting against governmental intrusion. Accordingly, they emphasize the government’s obligation to promote attainment of human rights by, for instance, providing adequate health care. (shrink)

Public health is concerned with how to improve the population’s health. At times, though, actions to improve the community’s health may collide with individual civil rights. For example, a public health response to a bioterrorism attack, such as smallpox, may require relaxing an individual’s due process protections to prevent the smallpox from spreading. This tension lies at the heart of public health policy. It also must be considered in discussing the concept of human rights in health.Proponents of incorporating the concept (...) of human rights in health emphasize the importance of both individual rights and collective rights. They argue that observing human rights is not only consistent with broad public health goals, but necessary to their attainment. To many human rights advocates, the concept is not limited to protecting against governmental intrusion. Accordingly, they emphasize the government’s obligation to promote attainment of human rights by, for instance, providing adequate health care. (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)

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)

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)

This article investigates the distribution of power in Poland’s drug reimbursement policy in the early 2000s. We examine competing theoretical expectations suggested by neopluralism, historical institutionalism, corporate domination, and clique theory of the post-communist state, using data from a purposive sample of 109 semi-structured interviews and documentary sources. We have four concrete findings. First, we uncovered rapid growth in budgetary spending on expensive drugs for narrow groups of patients. Second, to achieve these favorable policy outcomes drug companies employed two prevalent (...) methods of lobbying: informal persuasion of key members of local cliques and endorsements expressed by patient organizations acting as seemingly independent “third parties.” Third, medical experts were co-opted by multinational drug companies because they relied on these firms for scientific and financial resources that were crucial for their professional success. Finally, there was one-way social mobility from the state to the pharmaceutical sector, not the “revolving door” pattern familiar from advanced capitalist countries, with deleterious consequences for state capacity. Overall, the data best supported a combination of corporate domination and clique theory: drug reimbursement in Poland was dominated by Western multinationals in collaboration with domestically based cliques. (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)

The article analyses Finland’s and Norway’s female politicians’ war rhetoric with reference to the war in Afghanistan and contrasts it with Laura Bush’s rhetoric and feminism. In the Nordic countries the strong liberal and equity tradition of feminism could open up spaces for thinking differently about war, and yet the co-optation of hegemonic war rhetoric occurs in several ways. The ideograph ‘women-and-children’ is often evoked and added to the hegemonic foreign policy rhetoric without questioning the actual rhetorical work it does. (...) Gender-neutral rhetoric is used to hail into being a collective and unitary western do-gooder identity and to distance Nordic involvement from the US ‘war on terror’. The panegyric of UN Resolution 1325 facilitates the metamorphosis of the militaristic and masculine US-led NATO into a collective peacekeeper capable of saving ‘brown women from brown men’. (shrink)

Organ donation after cessation of circulation and respiration, both controlled and uncontrolled, has been proposed by the Institute of Medicine as a way to increase opportunities for organ procurement. Despite claims to the contrary, both forms of controlled and uncontrolled donation after cardiac death raise significant ethical and legal issues. Identified causes for concern include absence of agreement on criteria for the declaration of death, nonexistence of universal guidelines for duration before stopping resuscitation efforts and techniques, and assumption of presumed (...) intent to donate for the purpose of initiating temporary organ-preservation interventions when no expressed consent to donate is present. From a legal point of view, not having scientifically valid criteria of cessation of circulation and respiration for declaring death could lead to a conclusion that organ procurement itself is the proximate cause of death. Although the revised Uniform Anatomical Gift Act of 2006 provides broad immunity to those involved in organ-procurement activities, courts have yet to provide an opinion on whether persons can be held liable for injuries arising from the determination of death itself. Preserving organs in uncontrolled donation after cardiac death requires the administration of life-support systems such as extracorporeal membrane oxygenation. These life-support systems can lead to return of signs of life that, in turn, have to be deliberately suppressed by the administration of pharmacological agents. Finally, allowing temporary organ-preservation interventions without expressed consent is inherently a violation of the principle of respect for a person's autonomy. Proponents of organ donation from uncontrolled donation after cardiac death, on the other hand, claim that these nonconsensual interventions enhance respect for autonomy by allowing people, through surrogate decision making, to execute their right to donate organs. However, the lack of transparency and the absence of protection of individual autonomy, for the sake of maximizing procurement opportunities, have placed the current organ-donation system of opting-in in great jeopardy. Equally as important, current policies enabling and enhancing organ procurement practices, pose challenges to the constitutional rights of individuals in a pluralistic society as these policies are founded on flawed medical standards for declaring death. (shrink)

Jesudason and Weitz's article examines two public policy debates in California, where both sides of the debate used similar language that had the potential to be detrimental to women. Specifically, they show how anti-abortion crusaders in California used similar language to describe why women's rights should be curtailed as pro-choice advocates use when fighting for more choice and privacy for women's reproductive decisions. This commentary builds upon their article by demonstrating the harm that such co-opting causes to women's rights using (...) the example of sex selective abortion. By examining the legislative history of state and national bills to ban sex-selective abortion, this commentary demonstrates how the anti-abortion lobby has adopted the language of pro-choice advocates quite effectively. Although the framing of this issue as being “woman-protective” is strategic and insincere, such political framing is powerful, as Jesudason and Weitz have noted. Anti-abortion activists have convinced lawmakers in many states that sex-selective abortion is a dire issue in their state and that they must restrict it in order to protect women. In fact, there is no evidence that sex selective abortion is a problem in the United States, yet these frames have been very effective in weakening women's privacy rights. Whenever woman-protective framings are invoked for self-serving purposes, women's rights advocates must work hard to uncover the truth behind these discourses to prevent successful legislative efforts that curtail women's reproductive freedom. (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)

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)

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)

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)

Three standard tasks undertaken by applied ethicists engaged in the public policy process are identifying value issues, clarifying concepts and meanings, and analyzing arguments. I urge that these should be expanded to include making specific moral judgments and advocating positions and policies. Three objections to philosophers/ethicists' engagement in the formation of public policy are advanced and evaluated: philosophers necessarily do public policy badly, doing it at all compormises one's integrity as a seeker after truth, and frequently participation is in (...) the service of a repressive status quo that is structured simultaneously to preclude radical change and to co-opt ethicists. finally, however, I argue that those who would be ‘applied ethicists’ cannot avoid all participation in some form of a public policy process; that engagement holds the hope as well for improved ethical theory; that the preferred form of participation is frequently from outside of establishment bodies; and that wherever philosophers do involve themselves in policy formulation, this is best done in the expanded sense urged at the outset. Keywords: applied ethics, moral reasoning, public policy CiteULike Connotea Del.icio.us What's this? (shrink)

“Female sexual dysfunction” is the type of contested disease that has sparked concern about the role of the pharmaceutical industry in medical science. Many policies have been proposed to manage industry influence without carefully evaluating whether the proposed policies would be successful. We consider a proposal for incorporating citizen stakeholders into scientific research and show, via a detailed case study of the pharmaceutical regulation of flibanserin, that such programs can be co-opted. In closing, we use Holman’s asymmetric arms (...) race framework as a tool for evaluating policies in industry-funded science. (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)

The high rate of inequality in South Africa is rooted in colonial dispossession and racial exploitation, and still runs primarily along the racial divide. Policy initiatives taken to redress past economic injustices through the black economic empowerment (BEE) have failed to bring economic transformation. Using the twin lenses of epistemic violence and racial capitalism, this study analyses how entangled interests aimed to co-opt the ruling party elite by the apartheid-era business elite led to the BEE impasse. The pervasiveness of cultural (...) alienation in BEE failure suggests that a shift to restorative justice is necessary to break from the impasse. (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)

Biobanking in Europe has made major steps towards harmonization and shared standards for the collection and processing of data and samples stored in biobanks. Still, biobanks and researchers face substantial legal difficulties in the field of data protection and sample management. Data protection law was harmonized almost 15 years ago while rights in samples fall under the competence of the Member States of the EU. Despite the Data Protection Directive the field of data protection shows a substantial degree of deviation (...) as public health was excluded from the harmonization. Biobanks seem to have substantially fewer difficulties to cope with in terms of the legal requirements in the field of sample management. This paper discusses the legal framework, experiences of different biobanks in Europe and potential ways forward. It also highlights the need for a health economic analysis of the costs and benefits of privacy protection in Europe. At the moment, policymakers seem to build their decisions on an insufficient evidence base which underestimates the potential value of biobanks for European public health. Within the past few years little progress has been achieved with regards to the development of a unified legal framework in Europe, The diversity in the legal system is also reflected in the different approaches of ethics committees towards biobanking. To secure the responsible and effective use of data and samples, more efforts are needed to come up with pathways for a solution. (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.

Decisions about cardiopulmonary resuscitation may be based on medical prognosis, quality of life and patients' choices. Low survival rates indicate its overuse. Although the concept of medical futility has limitations, several strong predictors of non-survival have been identified and prognostic indices developed. Early results indicate that consideration of resuscitation in the elderly should be very selective, and support "opt-in" policies. In this minority of patients, quality of life is the principal issue. This is subjective and best assessed by the (...) individual in question. Patients' attitudes cannot be predicted reliably and surrogate decision-making is inadequate. Lay knowledge is poor. However, patients can use prognostic information to make rational choices. The majority welcome discussion of resuscitation and prefer this to be initiated by their doctors; many wish to decide for themselves. There is little evidence that this causes distress. The views of such patients, if competent, should be sought actively. (shrink)

Biobanking in Europe has made major steps towards harmonization and shared standards for the collection and processing of data and samples stored in biobanks. Still, biobanks and researchers face substantial legal difficulties in the field of data protection and sample management. Data protection law was harmonized almost 15 years ago while rights in samples fall under the competence of the Member States of the EU. Despite the Data Protection Directive the field of data protection shows a substantial degree of deviation (...) as public health was excluded from the harmonization. Biobanks seem to have substantially fewer difficulties to cope with in terms of the legal requirements in the field of sample management. This paper discusses the legal framework, experiences of different biobanks in Europe and potential ways forward. It also highlights the need for a health economic analysis of the costs and benefits of privacy protection in Europe. At the moment, policymakers seem to build their decisions on an insufficient evidence base which underestimates the potential value of biobanks for European public health. Within the past few years little progress has been achieved with regards to the development of a unified legal framework in Europe, The diversity in the legal system is also reflected in the different approaches of ethics committees towards biobanking. To secure the responsible and effective use of data and samples, more efforts are needed to come up with pathways for a solution. (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.

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)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)