There is increasing global pressure to ensure that pregnant women are responsibly and safely included in clinical research in order to improve the evidence base that underpins healthcare delivery during pregnancy. One supposed barrier to inclusion is the assumption that pregnant women will be reluctant to participate in research. There is however very little empirical research investigating the views of pregnant women. Their perspective on the benefits, burdens and risks of research is a crucial component to ensuring effective recruitment. The (...) Research In Pregnancy Ethics study set out to ascertain the views of pregnant women about research participation using an inductive thematic analysis. We conducted semi-structured interviews with 20 women who had participated in a double-blind randomised placebo controlled trial in Wellington while pregnant. Our results show that at least some pregnant women recognise the value and importance of research during pregnancy. The women we interviewed were deeply invested in the research process and outcomes. Key motivations for participating were altruism, playing a valuable civic role and the importance of research. The main perceived burdens related to inconvenience and time commitment. For some women, possible randomization to the placebo arm was regarded as a burden or disadvantage. (shrink)

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter-arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the (...) expressivist argument has a wide range of underpinnings and that counter-arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still. (shrink)

Informed consent is considered by many to be a moral imperative in medical research. However, it is increasingly acknowledged that in many actual instances of consent to participation in medical research, participants do not employ the provided information in their decision to consent, but rather consent based on the trust they hold in the researcher or research enterprise. In this article we explore whether trust-based consent is morally inferior to information-based consent. We analyse the moral values essential to valid consent (...) – autonomy, voluntariness, non-manipulation, and non-exploitation – and assess whether these values are less protected and promoted by consent based on trust than they are by consent based on information. We find that this is not the case, and thus conclude that trust-based consent if not morally inferior to information-based consent. (shrink)

Mood disorders, including major depressive disorder and bipolar disorder, are highly prevalent, frequently disabling, and sometimes deadly. Additional research and more effective medications are desperately needed, but clinical trials research in mood disorders is fraught with ethical issues. Although many authors have discussed these issues, most do so from a theoretical viewpoint. This manuscript uses available empirical data to inform a discussion of the primary ethical issues raised in mood disorders research. These include issues of consent and decision-making capacity, including (...) patients’ motivations for participating in research. We also address drug withdrawals, placebo controls, and the overall safety of research. Finally, we examine the extant literature for studies discussing potential indirect benefits of clinical trials research to participants. Taken together, the evidence suggests that clinical trials research incorporating drug withdrawals and placebo controls can be conducted safely and ethically, even in patients with severe or treatment-resistant mood disorders. In fact, given the dearth of effective treatment options for this population, it is our opinion that a moral imperative exists to extend the offer of research participation to severely ill or treatment-resistant groups. (shrink)

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End-of-Life Decision-Making report, published in (...) this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision-making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities. (shrink)

In this article I seek to establish what, if anything, might be morally troubling about morally enhancing oneself through biomedical means. Building on arguments by Harris, while simultaneously acknowledging several valid counter-arguments that have been put forth by his critics, I argue that taking BMEs necessarily incurs at least one moral cost in the restrictions they impose on our freedom. This does not necessarily entail that the use of BMEs cannot be overall justified, nor that, in certain cases, their costs (...) may not be forestalled. It does show, however, that their use is not morally neutral. There is a cost to such technologies and, as such, the onus will always be on their defenders to show that these costs can compensated for. (shrink)

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

Crowdfunding is increasingly common in medical research. Some critics are concerned that by adopting crowdfunding, some researchers may sidestep the established systems of review of the social and scientific value of studies, especially mechanisms of expert-based review. I argue firstly that such concerns are based on a misleading picture of how research value is assessed and secondly that crowdfunding may turn out to be an useful complement of extant funding systems. I start with the idea that medical knowledge is a (...) structured and intermediate public good and explain from this perspective that funding systems as a whole, rather than any of their parts ought to be considered devices for the discovery of the social and scientific value of research. If so, we should not be concerned with whether crowdfunding bypasses expert reviews, but with whether it may constitute an improvement of extant funding systems. In the second part, I speculate that crowdfunding may ameliorate, albeit limitedly, some recalcitrant failures of funding systems, such as the sponsorship of research on neglected diseases, and smooth funding adaptations for scientific transitions. If, after trial, such hypotheses turn out to be true, crowdfunding ought to be promoted. (shrink)

Moral enhancement refers to the possibility of making individuals and societies better from a moral standpoint. A fierce debate has emerged about the ethical aspects of moral enhancement, notably because steering moral enhancement in a particular direction involves choosing amongst a wide array of competing options, and these options entail deciding which moral theory or attributes of the moral agent would benefit from enhancement. Furthermore, the ability and effectiveness of different neurotechnologies to enhance morality have not been carefully examined. In (...) this paper, we assess the practical feasibility of moral enhancement neurotechnologies. We reviewed the literature on neuroscience and cognitive science models of moral judgment and analyzed their implications for the specific target of intervention in moral enhancement. We also reviewed and compared evidence on available neurotechnologies that could serve as tools of moral enhancement. We conclude that the predictions of rationalist, emotivist, and dual process models are at odds with evidence, while different intuitionist models of moral judgment are more likely to be aligned with it. Furthermore, the project of moral enhancement is not feasible in the near future as it rests on the use of neurointerventions, which have no moral enhancement effects or, worse, negative effects. (shrink)

I argue that appeals to conscience do not constitute reasons for granting healthcare professionals exemptions from providing services they consider immoral. My argument is based on a comparison between a type of objection that many people think should be granted, i.e. to abortion, and one that most people think should not be granted, i.e. to antibiotics. I argue that there is no principled reason in favour of conscientious objection qua conscientious that allows to treat these two cases differently. Therefore, I (...) conclude that there is no principled reason for granting conscientious objection qua conscientious in healthcare. What matters for the purpose of justifying exemptions is not whether an objection is ‘conscientious’, but whether it is based on the principles and values informing the profession. I provide examples of acceptable forms of objection in healthcare. (shrink)

In the debates concerning the ethics of human enhancement through biological or technological modifications, there have been several appeals to the concept of human dignity, both by those favouring such enhancement and by those opposing it. The result is the phenomenon of ‘dignity talk', where opposing sides both appeal to the concept of human dignity to ground their arguments resulting in a moral impasse. This article examines the use of the concept of human dignity in the enhancement debates and reveals (...) that the problem of dignity talk arises because proponents of various positions tend to ground human dignity in different features of the human individual. These features include species-membership, possession of a particular capacity, a sense of self-worth, and moral behaviour. The article proposes a solution to this problem by appealing to another feature of human beings, namely their being-in-relationship-over-time. Doing so enables us to understand dignity as a concept that affirms the worth of human individuals as complex, multidimensional wholes, rather than as isolated features. Consequently, the concept of human dignity can serve both a descriptive and a normative function in the enhancement debates. At a descriptive level, asking what advocates of a position mean when they refer to human dignity will reveal what aspects of being human they deem to be most valuable. The debate can then focus on these values. The normative function, although it cannot proscribe or prescribe all enhancement, approves only those enhancements that contribute to the flourishing of human individuals as multidimensional wholes. (shrink)

Bioethics needs an elaborated concept of autonomy based on empirical knowledge about the prerequisites of the capacity of autonomy. Whereas Beauchamp and Childress, and many other bioethicists have discussed social influences on the capacity of autonomy in depth, neurobiological influences have received less attention. A comprehensive concept of autonomy should consider both social and biological factors that can diminish the capacity of autonomy. This article focuses on neurobiological influences that can reduce the capacity of autonomy. The thesis of this article (...) is that the integration of neuropsychiatric knowledge into the concept of autonomy is essential for evaluating demands for harmful medical treatments which might be caused by a brain disease, and deciding on involuntary treatments of patients who suffer from substantial lack of autonomy due to neuropsychiatric disorders. Diametrically opposed to such a comprehensive concept of the capacity of autonomy is the concept of ‘liberty of illness’. In Germany, this concept is supported not only by anti-psychiatric groups but also by the Federal Constitutional Court. Several real cases demonstrate how the brain can be ‘hijacked’ by parasites, antibodies or technical devices. Applying the concept of ‘liberty of illness’ to persons whose decision-making capacity is severely affected by neuropsychiatric disorders is cynical. These patients neither chose their disease nor would refuse effective treatment if their will was not disturbed by the disease. Respect for autonomy should be understood as the positive obligation to save, support or restore the biological prerequisites of the capacity for autonomous decision-making. (shrink)

The degree of autonomy present in the choices made by individuals with an addiction, notably in the context of research, is unclear and debated. Some have argued that addiction, as it is commonly understood, prevents people from having sufficient decision-making capacity or self-control to engage in choices involving substances to which they have an addiction. Others have criticized this position for being too radical and have counter-argued in favour of the full autonomy of people with an addiction. Aligning ourselves with (...) middle-ground positions between these two extremes, we flesh out an account of voluntary action that makes room for finer-grained analyses than the proposed all-or-nothing stances, which rely on a rather static metaphysical understanding of the nature of the voluntariness of action. In contrast, a dynamic concept of voluntary action better accounts for varying levels of voluntariness of the person with an addiction which takes into consideration internal and external determinants of choice. Accordingly, like other components of autonomous choices such as level of information, voluntariness can fluctuate. Therefore, there are important implications for research and clinical ethics in matters of consent, recruitment, and therapeutic approaches. Overall, our proposal is inspired by a pragmatist understanding of voluntary action, notably with respect to how voluntariness is both informed by actions and experiences that shape one's view of the world. (shrink)

Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an ‘ethics of neuroscience’ and a ‘neuroscience of ethics’. However, questions surface as to whether a ‘neuroscience of ethics’ is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. (...) In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. (shrink)

This article argues that two forms of mitochondrial replacement therapy, maternal spindle transfer and pro-nuclear transfer, are not therapies at all because they do not treat children who are coming into existence. Rather, these technologies merely create healthy children where none was inevitable. Even if creating healthy lives has some value, it is not to be confused with the medical value of a cure or therapy. The article addresses a recent Bioethics article, ‘Mitochondrial Replacement: Ethics and Identity,’ by Wrigley, Wilkinson, (...) and Appleby, who argue that PNT is morally favorable to MST due to the Non-Identity Problem. Wrigley et al. claim that PNT, since it occurs post-conception, preserves the identity of the resulting child, whereas MST, since it occurs pre-conception, is an identity-altering technique. As such, a child born with mitochondrial disease could complain that her parents failed to use PNT, but not MST. The present article argues that the authors are mistaken: both MST and PNT are identity-affecting techniques. But this is of little matter, for we should be cautious in drawing any moral conclusions from the application of the Non-Identity Problem to cases. The article then argues that the authors are mistaken in inferring that PNT is a type of embryonic cure or therapy for children with mitochondrial disease. The article cautions against the mistaken life-saving rhetoric that is common in bioethics discussions of MRTs. (shrink)

According to the judgement of the European Court of Justice in 2014, human parthenogenetic stem cells are excluded from the patenting prohibition of procedures based on hESC by the European Biopatent Directive, because human parthenotes are not human embryos. This article is based on the thesis that in light of the technological advances in the field of stem cell research, the attribution of the term ‘human embryo’ to certain entities on a descriptive level as well as the attribution of a (...) normative protection status to certain entities based on the criterion of totipotency, are becoming increasingly unclear. The example of human parthenotes in particular demonstrates that totipotency is not at all a necessary condition for the attribution of the term ‘human embryo’. Furthermore, the example of hiPSC and somatic cells particularly shows that totipotency is also not a sufficient condition for the attribution of a normative protection status to certain entities. Therefore, it is not a suitable criterion for distinguishing between human embryos worthy of protection and human non-embryos not worthy of protection. Consequently, this conclusion has repercussions for the patenting question. The strict delineation between an ethically problematic commercial use of human embryos and the concomitant patenting prohibition of hESC-based procedures and an ethically unproblematic commercial use of human non-embryos and the therefore either unrestrictedly permitted or even unregulated patenting of procedures based on these alleged alternatives becomes increasingly blurred. (shrink)

Background There has been little attention paid to research on the outcomes of clinical ethics support or critical reflection on what constitutes a good CES outcome. Understanding how CES users perceive the importance of CES outcomes can contribute to a better understanding, use of and normative reflection on CES outcomes. Objective To describe the perceptions of Dutch healthcare professionals on important outcomes of moral case deliberation, prior to MCD participation, and to compare results between respondents. Methods This mixed-methods study used (...) both the Euro-MCD instrument and semi-structured interviews. Healthcare professionals who were about to implement MCD were recruited from nursing homes, hospitals, psychiatry and mentally disabled care institutions. Results 331 healthcare professionals completed the Euro-MCD instrument, 13 healthcare professionals were interviewed. The outcomes perceived as most important were ‘more open communication’, ‘better mutual understanding’, ‘concrete actions’, ‘see the situation from different perspectives’, ‘consensus on how to manage the situation’ and ‘find more courses of action’. Interviewees also perceived improving quality of care, professionalism and the organization as important. Women, nurses, managers and professionals in mentally disabled care rated outcomes more highly than other respondents. Conclusions Dutch healthcare professionals perceived the MCD outcomes related to collaboration as most important. The empirical findings can contribute to shared ownership of MCD and a more specific use of MCD in different contexts. They can inform international comparative research on different CES types and contribute to normative discussions concerning CES outcomes. Future studies should reflect upon important MCD outcomes after having experienced MCD. (shrink)

Against the background assumptions that knowing what clinical ethics consultation represents to those with whom ethics consultants work most closely is a necessary component for being responsible in the practice of ethics consultation, and the complexities of soliciting and understanding colleague evaluations require another inherent responsibility for the methods by which ethics consultations are evaluated, in this article we report our experience soliciting, analyzing, and trying to understand retrospective evaluations of our Clinical Ethics Consultation Service. These evaluations were collected through (...) a quality assessment effort at our institution. Drawing from the qualitative elements of our survey instrument, we describe unexpected variations among the requests for ethics consultation and the retrospective reports from those colleagues making the requests. Focusing on just one aspect – the reason for request – raised several core questions about how we should evaluate those retrospective reports, what could be learned from the differences that we were now encountering, and what we could learn about the process of evaluating our practices. Working through these questions, we suggest several issues to consider in ongoing efforts to describe and evaluate clinical ethics consultation: the role of time and memory in evaluating retrospective evaluations, the importance of attending to the language of moral shift or disruption with which our colleagues describe their experiences, and how to understand the role of ethics consultation in creating ‘moral space’ for colleagues to process their moral experiences. (shrink)

Moral Case Deliberation is an up and coming form of ethics support wherein clinical professionals deliberate about moral questions they face in their work. So far, it has been unclear what quality of deliberation in MCD is entailed and how to evaluate this quality. This article proposes a coding scheme that fits the theoretical background of MCD and allows researchers to evaluate the quality of the deliberation in MCDs. We consider deliberation in MCD to be of good quality when participants (...) enrich their own understanding of a case by being exposed to the viewpoints of others. In order to have such an enriching effect, the deliberation in an MCD ought to involve different kinds of arguments from the perspectives of different stakeholders and in favour of different resolutions to the case; and the process of deliberation ought to be critical but constructive. (shrink)

In this article, I address what kinds of claims are of the right kind to ground conscientious refusals. Specifically, I investigate what conceptions of moral responsibility and moral wrongness can be permissibly presumed by conscientious objectors. I argue that we must permit HCPs to come to their own subjective conclusions about what they take to be morally wrong and what they take themselves to be morally responsible for. However, these subjective assessments of wrongness and responsibility must be constrained in several (...) important ways: they cannot involve empirical falsehoods, objectionably discriminatory attitudes, or unreasonable normative beliefs. I argue that the sources of these constraints are the basic epistemic, relational, and normative competencies needed to function as a minimally decent health-care professional. Finally, I consider practical implications for my framework, and argue that it shows us that the objection raised by the plaintiffs in Zubik v. Burwell is of the wrong sort. (shrink)

In my articles ‘The Substance View: A Critique’ and ‘The Substance View: A Critique,’ I raise objections to the substance view, a theory of intrinsic value and moral standing defended by a number of contemporary moral philosophers, including Robert P. George, Patrick Lee, Christopher Tollefsen, and Francis Beckwith. In part one of my critique of the substance view, I raise reductio-style objections to the substance view's conclusion that the standard human fetus has the same intrinsic value and moral standing as (...) the standard adult human being, among other human beings. In part two, I raise objections to some of the premises invoked in support of that conclusion. Here, in part three, I raise objections to Henrik Friberg-Fernros's attempt to rebut some of the aforementioned objections. (shrink)

In some jurisdictions there is a puzzling asymmetry between consent and refusal, where, for some kinds of treatment, the adolescent patient has the power to permit her own treatment but her refusal does not have the same kind of normative significance as refusal of treatment by a competent adult. In this journal I recently offered a clarification and defence of this asymmetry in terms of a paternalistic justification of the sharing of normative powers between adolescents and other parties. Lawlor offers (...) a number of objections to this account. Three of his objections can be dealt with quickly. But one of them is much more challenging: the asymmetry of consent and refusal entails a practice of making sham offers. They do not really offer a choice at all. Genuine offers seem to require a commitment to be symmetrically responsive to whatever decision outcome is reached by the recipient of the offer. When we reflect upon the way that offers can be made in complex social contexts, where different parties have a ‘say’ in what ought to be done, the symmetry of responsiveness need not apply. Offers can be genuine, without being symmetrically responsive. Contrary to the seemingly plausible objection, the asymmetry of consent and refusal does not entail sham offers, or the offer of ‘sham choices’. (shrink)

At some point in the future – perhaps within the next few decades – it will be possible for foetuses to develop completely outside the womb. Ectogenesis, as this technology is called, raises substantial issues for the abortion debate. One such issue is that it will become possible for a woman to have an abortion, in the sense of having the foetus removed from her body, but for the foetus to be kept alive. We argue that while there is a (...) right to an abortion, there are reasons to doubt that there is a right to the death of the foetus. Our strategy in this essay is to consider and reject three arguments in favour of this latter right. The first claims that women have a right not to be biological mothers, the second that women have a right to genetic privacy, and the third that a foetus is one's property. Furthermore, we argue that it follows from rejecting the third claim that genetic parents also lack a right to the destruction of cryopreserved embryos used for in vitro fertilization. The conclusion that a woman possesses no right to the death of the foetus builds upon the claims that other pro-choice advocates, such as Judith Jarvis Thomson, have made. (shrink)

The current process towards formalization within evaluation research, in particular the use of pre-set standards and the focus on predefined outcomes, implies a shift of ownership from the people who are actually involved in real clinical ethics support services in a specific context to external stakeholders who increasingly gain a say in what ‘good CESS’ should look like. The question is whether this does justice to the insights and needs of those who are directly involved in actual CESS practices, be (...) it as receivers or providers. We maintain that those actually involved in concrete CESS practices should also be involved in its evaluation, not only as respondents, but also in setting the agenda of the evaluation process and in articulating the criteria by which CESS is evaluated. Therefore, we propose a participatory approach to CESS evaluation. It focuses on the concrete contexts in which CESS takes place, reflective and dialogical learning processes, and how to be democratic and inclusive. In particular, this approach to CESS evaluation is akin to realist evaluation, dialogical evaluation, and responsive evaluation. An example of a participatory approach to evaluating CESS is presented and some critical issues concerning this approach are discussed. (shrink)

We have argued for an urgent need for moral bioenhancement; that human moral psychology is limited in its ability to address current existential threats due to the evolutionary function of morality to maximize cooperation in small groups. We address here Powell and Buchanan's novel objection that there is an ‘inclusivist anomaly’: humans have the capacity to care beyond in-groups. They propose that ‘exclusivist’ morality is sensitive to environmental cues that historically indicated out-group threat. When this is not present, we are (...) inclusivist. They conclude that moral bioenhancement is unnecessary or less effective than socio-cultural interventions. We argue that Powell and Buchanan underestimate the hard-wiring features of moral psychology; their appeal to adaptively plastic, conditionally expressed responses accounts for only a fragment of our moral psychology. In addition to restrictions on our altruistic concern that their account addresses – such as racism and sexism – there are ones it is ill-suited to address: that our concern is stronger for kin and friends and for concrete individuals rather than for statistical lives; also our bias towards the near future. Hard-wired features of our moral psychology that are not clearly restrictions in altruistic concern also include reciprocity, tit-for-tat, and others. Biomedical means are not the only, and maybe not the most important, means of moral enhancement. Socio-cultural means are of great importance and there are currently no biomedical interventions for many hard-wired features. Nevertheless research is desirable because the influence of these features is greater than our critics think. (shrink)

This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health research resources should be fairly allocated between health problems experienced domestically (...) versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non-domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision-making on whether and to what extent to allocate resources to non-domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny. (shrink)

Natural disasters in populated areas may result in massive casualties and extensive destruction of infrastructure. Humanitarian aid delegations may have to cope with the complicated issue of patient prioritization under conditions of severe resource scarcity. A triage model, consisting of five principles, is proposed for the prioritization of patients, and it is argued that rational and reasonable agents would agree upon them. The Israel Defense Force's humanitarian mission to Haiti following the 2010 earthquake serves as a case study for the (...) various considerations taken into account when designing the ethical-clinical policy of field hospitals. The discussion focuses on three applications: the decision to include an intensive care unit, the decision to include obstetrics and neonatal units, and the treatment policy for compound fractures. (shrink)

This article describes a process of developing, implementing and evaluating a clinical ethics support service intervention with the goal of building up a context-sensitive structure of minimal clinical-ethics in an oncology department without prior clinical ethics structure. Scholars from different disciplines have called for an improvement in the evaluation of clinical ethics support services for different reasons over several decades. However, while a lot has been said about the concepts and methodological challenges of evaluating CESS up to the present time, (...) relatively few empirical studies have been carried out. The aim of this article is twofold. On the one hand, it describes a process of development, modifying and evaluating a CESS intervention as part of the ETHICO research project, using the approach of qualitative-formative evaluation. On the other hand, it provides a methodological analysis which specifies the contribution of qualitative empirical methods to the evaluation of CESS. We conclude with a consideration of the strengths and limitations of qualitative evaluation research with regards to the evaluation and development of context sensitive CESS. We further discuss our own approach in contrast to rather traditional consult or committee models. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the (...) genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the (...) genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)

Vaccine refusal occurs for a variety of reasons. In this article we examine vaccine refusals that are made on conscientious grounds; that is, for religious, moral, or philosophical reasons. We focus on two questions: first, whether people should be entitled to conscientiously object to vaccination against contagious diseases ; second, if so, to what constraints or requirements should conscientious objection to vaccination be subject. To address these questions, we consider an analogy between CO to vaccination and CO to military service. (...) We argue that conscientious objectors to vaccination should make an appropriate contribution to society in lieu of being vaccinated. The contribution to be made will depend on the severity of the relevant disease, its morbidity, and also the likelihood that vaccine refusal will lead to harm. In particular, the contribution required will depend on whether the rate of CO in a given population threatens herd immunity to the disease in question: for severe or highly contagious diseases, if the population rate of CO becomes high enough to threaten herd immunity, the requirements for CO could become so onerous that CO, though in principle permissible, would be de facto impermissible. (shrink)

Vaccine refusal occurs for a variety of reasons. In this article we examine vaccine refusals that are made on conscientious grounds; that is, for religious, moral, or philosophical reasons. We focus on two questions: first, whether people should be entitled to conscientiously object to vaccination against contagious diseases ; second, if so, to what constraints or requirements should conscientious objection to vaccination be subject. To address these questions, we consider an analogy between CO to vaccination and CO to military service. (...) We argue that conscientious objectors to vaccination should make an appropriate contribution to society in lieu of being vaccinated. The contribution to be made will depend on the severity of the relevant disease, its morbidity, and also the likelihood that vaccine refusal will lead to harm. In particular, the contribution required will depend on whether the rate of CO in a given population threatens herd immunity to the disease in question: for severe or highly contagious diseases, if the population rate of CO becomes high enough to threaten herd immunity, the requirements for CO could become so onerous that CO, though in principle permissible, would be de facto impermissible. (shrink)

Assisting suicide is legal in Switzerland if it is offered without selfish motive to a person with decision-making capacity. Although the ‘Swiss model’ for suicide assistance has been extensively described in the literature, the formally and informally protected liberties and claims of assistors and recipients of suicide assistance in Switzerland are incompletely captured in the literature. In this article, we describe the package of rights involved in the ‘Swiss model’ using the framework of Hohfeldian rights as modified by Wenar. After (...) outlining this framework, we dissect the rights involved in suicide assistance in Switzerland, and compare it with the situation in England and Germany. Based on this approach, we conclude that in Switzerland, claim rights exist for those requesting suicide assistance, and for those who are considering providing such assistance, even though no entitlements exist toward suicide assistance. We then describe the implementation of the ‘Swiss model’ and difficulties arising within it. Clarifying these issues is important to understand the Swiss situation, to evaluate what features of it may or may not be worth correcting or emulating, and to understand how it can impact requests for suicide assistance in other countries due to ‘suicide tourism’. It is also important to understand exactly what sets Switzerland apart from other countries with different legislations regarding suicide assistance. (shrink)

Assisting suicide is legal in Switzerland if it is offered without selfish motive to a person with decision-making capacity. Although the ‘Swiss model’ for suicide assistance has been extensively described in the literature, the formally and informally protected liberties and claims of assistors and recipients of suicide assistance in Switzerland are incompletely captured in the literature. In this article, we describe the package of rights involved in the ‘Swiss model’ using the framework of Hohfeldian rights as modified by Wenar. After (...) outlining this framework, we dissect the rights involved in suicide assistance in Switzerland, and compare it with the situation in England and Germany. Based on this approach, we conclude that in Switzerland, claim rights exist for those requesting suicide assistance, and for those who are considering providing such assistance, even though no entitlements exist toward suicide assistance. We then describe the implementation of the ‘Swiss model’ and difficulties arising within it. Clarifying these issues is important to understand the Swiss situation, to evaluate what features of it may or may not be worth correcting or emulating, and to understand how it can impact requests for suicide assistance in other countries due to ‘suicide tourism’. It is also important to understand exactly what sets Switzerland apart from other countries with different legislations regarding suicide assistance. (shrink)

This article asks whether enhancement can truly lead to something beyond humanity, or whether it is, itself, an inherently human act. The ‘posthuman’ is an uncertain proposition. What, exactly, would one be? Many commentators suggest it to be an endpoint for the use of enhancement technologies, yet few choose to codify the term outright; which frequently leads to unnecessary confusion. Characterizing and contextualizing the term, particularly its more novel uses, is therefore a valuable enterprise. The abuse of the term ‘Human’, (...) especially in the context of the enhancement debate and the myriad meanings ascribed to it, could give ‘posthuman’ very different slants depending on one's assumptions. There are perhaps three main senses in which the term ‘human’ is employed: the biological, the moral, and the self-idealizing. In the first of these, ‘human’ is often conflated with Homo sapiens, and used interchangeably to denote species; in the second, ‘human’ generally refers to a community of beings which qualify as having a certain moral value; and the third, the self-idealizing sense, is more descriptive; a label denoting the qualities that make us who we are as beings, or ‘what matters about those who matter’. So, what might enhancement make us? A novel species or genus of hominid? Or, perhaps, a morally more valuable being than a regular human? Of course, there's a third option: that a posthuman is a being which embodies our self-ideal more successfully than we do ourselves – one ‘more human than human’. Which to choose? (shrink)

This article asks whether enhancement can truly lead to something beyond humanity, or whether it is, itself, an inherently human act. The ‘posthuman’ is an uncertain proposition. What, exactly, would one be? Many commentators suggest it to be an endpoint for the use of enhancement technologies, yet few choose to codify the term outright; which frequently leads to unnecessary confusion. Characterizing and contextualizing the term, particularly its more novel uses, is therefore a valuable enterprise. The abuse of the term ‘Human’, (...) especially in the context of the enhancement debate and the myriad meanings ascribed to it, could give ‘posthuman’ very different slants depending on one's assumptions. There are perhaps three main senses in which the term ‘human’ is employed: the biological, the moral, and the self-idealizing. In the first of these, ‘human’ is often conflated with Homo sapiens, and used interchangeably to denote species; in the second, ‘human’ generally refers to a community of beings which qualify as having a certain moral value; and the third, the self-idealizing sense, is more descriptive; a label denoting the qualities that make us who we are as beings, or ‘what matters about those who matter’. So, what might enhancement make us? A novel species or genus of hominid? Or, perhaps, a morally more valuable being than a regular human? Of course, there's a third option: that a posthuman is a being which embodies our self-ideal more successfully than we do ourselves – one ‘more human than human’. Which to choose? (shrink)

In donation after the circulatory-respiratory determination of death, the dead donor rule requires that the donor be dead before organ procurement can proceed. Under the relevant limb of the Uniform Determination of Death Act 1981, a person is dead when the cessation of circulatory-respiratory function is ‘irreversible’. Critics of current practice in DCDD have argued that the donor is not dead at the time organs are procured, and so the procurement of organs from these donors violates the dead donor rule. (...) We offer a new argument here in defence of current DCDD practice, and, in particular, of the interpretation of the requirement of ‘irreversibility’ as permanence. (shrink)

In donation after the circulatory-respiratory determination of death, the dead donor rule requires that the donor be dead before organ procurement can proceed. Under the relevant limb of the Uniform Determination of Death Act 1981, a person is dead when the cessation of circulatory-respiratory function is ‘irreversible’. Critics of current practice in DCDD have argued that the donor is not dead at the time organs are procured, and so the procurement of organs from these donors violates the dead donor rule. (...) We offer a new argument here in defence of current DCDD practice, and, in particular, of the interpretation of the requirement of ‘irreversibility’ as permanence. (shrink)

The goal of this article is to introduce a philosophical analysis of a widely neglected condition which affects between 3% and 18% of the population. People affected by this condition experience a lower level of wellbeing than the average population and are discriminated against in both their professional and their personal life. I will argue that this form of discrimination should be taken more seriously in philosophical debate and that social, legal and medical measures ought to be taken in order (...) to improve the quality of life of people affected by this condition. (shrink)

The goal of this article is to introduce a philosophical analysis of a widely neglected condition which affects between 3% and 18% of the population. People affected by this condition experience a lower level of wellbeing than the average population and are discriminated against in both their professional and their personal life. I will argue that this form of discrimination should be taken more seriously in philosophical debate and that social, legal and medical measures ought to be taken in order (...) to improve the quality of life of people affected by this condition. (shrink)

In an article in this journal, Christopher Cowley argues that we have ‘misunderstood the special nature of medicine, and have misunderstood the motivations of the conscientious objectors’. We have not. It is Cowley who has misunderstood the role of personal values in the profession of medicine. We argue that there should be better protections for patients from doctors' personal values and there should be more severe restrictions on the right to conscientious objection, particularly in relation to assisted dying. We argue (...) that eligible patients could be guaranteed access to medical services that are subject to conscientious objections by: removing a right to conscientious objection; selecting candidates into relevant medical specialities or general practice who do not have objections; demonopolizing the provision of these services away from the medical profession. (shrink)

In an article in this journal, Christopher Cowley argues that we have ‘misunderstood the special nature of medicine, and have misunderstood the motivations of the conscientious objectors’. We have not. It is Cowley who has misunderstood the role of personal values in the profession of medicine. We argue that there should be better protections for patients from doctors' personal values and there should be more severe restrictions on the right to conscientious objection, particularly in relation to assisted dying. We argue (...) that eligible patients could be guaranteed access to medical services that are subject to conscientious objections by: removing a right to conscientious objection; selecting candidates into relevant medical specialities or general practice who do not have objections; demonopolizing the provision of these services away from the medical profession. (shrink)

Erik Malmqvist defends the prohibition on kidney sales as a justifiable measure to protect individuals from harms they have not autonomously chosen. This appeal to ‘group soft paternalism’ requires that three conditions be met. It must be shown that some vendors will be harmed, that some will be subject to undue pressure to vend, and that we cannot feasibly distinguish between the autonomous and the non-autonomous. I argue that Malmqvist fails to demonstrate that any of these conditions are likely to (...) obtain. His argument involves two common errors. First, he, like many, proceeds on a mistaken understanding of how to assess harm. What matters is not the balance of costs and benefits of vending, but a comparison of potential vendors’ welfare across two possible courses of action. Second, Malmqvist's concerns about third-party pressure are predicated on an empirically unrealistic understanding of the operation of a regulated market. A widely underappreciated fact is that kidney sales will be relatively rare, and most who try to vend will be unable to. Because pressure on another to vend will not result in the desired outcome, few will exert it. (shrink)

Erik Malmqvist defends the prohibition on kidney sales as a justifiable measure to protect individuals from harms they have not autonomously chosen. This appeal to ‘group soft paternalism’ requires that three conditions be met. It must be shown that some vendors will be harmed, that some will be subject to undue pressure to vend, and that we cannot feasibly distinguish between the autonomous and the non-autonomous. I argue that Malmqvist fails to demonstrate that any of these conditions are likely to (...) obtain. His argument involves two common errors. First, he, like many, proceeds on a mistaken understanding of how to assess harm. What matters is not the balance of costs and benefits of vending, but a comparison of potential vendors’ welfare across two possible courses of action. Second, Malmqvist's concerns about third-party pressure are predicated on an empirically unrealistic understanding of the operation of a regulated market. A widely underappreciated fact is that kidney sales will be relatively rare, and most who try to vend will be unable to. Because pressure on another to vend will not result in the desired outcome, few will exert it. (shrink)

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored (...) to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and in evaluating the ethics of proposed research proposals (...) when research ethics committees assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations. (shrink)

Despite the growing importance of ‘social value’ as a central feature of research ethics, the term remains both conceptually vague and to a certain extent operationally rigid. And yet, perhaps because the rhetorical appeal of social value appears immediate and self-evident, the concept has not been put to rigorous investigation in terms of its definition, strength, function, and scope. In this article, we discuss how the anthropological concept of liminality can illuminate social value and differentiate and reconfigure its variegated approaches. (...) Employing liminality as a heuristic encourages a reassessment of how we understand the mobilization of ‘social value’ in bioethics. We argue that social value as seen through the lens of liminality can provide greater clarity of its function and scope for health research. Building on calls to understand social value as a dynamic, rather than a static, concept, we emphasize the need to appraise social value iteratively throughout the entire research as something that transforms over multiple times and across multiple spaces occupied by a range of actors. (shrink)

Pragmatic trials aim to directly inform health care decision-making through the collection of so-called ‘real world data’ from observations of comparative treatment effects in clinical practice. In order to ensure the applicability and feasibility of a pragmatic trial, design features may be necessary that deviate from standard research ethics requirements. Examples are traditional requirements to seek written informed consent and to perform extensive data and safety monitoring. Proposals for deviations from standard research ethics practice have resulted in controversy about their (...) ethical acceptability. One of the justifications for altered procedures is the allegedly high social value of pragmatic trials. In order to properly operationalize the concept in the ethical assessment of pragmatic trial designs, specification is warranted. We identified three determinants from common claims about a pragmatic trial's social value: the extent to which the research question has real world relevance, the trial design's ability to generate a real world answer and the probability of direct uptake of the results by decision-makers in practice. Subsequently, we discuss how these determinants should be applied to the practice of pragmatic trials, and to what extent they might be applicable to explanatory trials. (shrink)

This article reports on qualitative research conducted in KwaZulu-Natal, South Africa, among researchers and gate-keepers of health facilities in the province. Results suggest disparate but not irreconcilable perceptions of the social value of research in provincial health facilities. This study found that researchers tended to emphasize the contribution of research to the generation of knowledge and to the health of future patients while gate-keepers of health facilities tended to emphasize its contribution to the healthcare system and to current patients. Furthermore, (...) relations between research stakeholders were perceived to be somewhat fragile, making it difficult for stakeholders to achieve consensus about the social value of research, as well as on ways to maximize value. Interventions to negotiate a shared perspective on the social value of research would appear to be warranted, and the findings of this study suggest some focus areas for such intervention. (shrink)

According to prominent bioethics scholars and international guidelines, researchers and sponsors have obligations to ensure that the products of their research are reasonably available to research participants and their communities. In other words, the claim is that research is unethical unless it has local social value. In this article, we argue that the existing conception of reasonable availability should be replaced with a social value obligation that extends to the global poor. To the extent the social value requirement has been (...) understood as geographically constrained to the communities that host research and the countries that can afford the products of research, it has neglected to include the global poor as members of the relevant society. We argue that a new conception of social value obligations is needed for two reasons. First, duties of global beneficence give reason for researchers, sponsors, and institutions to take steps to make their products more widely accessible. Second, public commitments made by many institutions acknowledge and engender responsibilities to make the products of research more accessible to the global poor. Future research is needed to help researchers and sponsors discharge these obligations in ways that unlock their full potential. (shrink)

In ‘Professional Hubris and its Consequences’, Eric Vogelstein claims that ‘that there are no good arguments in favor of professional organizations taking genuinely controversial positions on issues of professional ethics’. In this response, I defend two arguments in favour of organisations taking such positions: that their stance-taking may lead to better public policy, and that it may lead to better practice by medical professionals. If either of those defences succeeds, then Vogelstein's easy path to his conclusion – that professional organisations (...) should not take such stances – is blocked. He or others must instead look to establish that the reasons against stance-taking on genuine ethical controversies are more compelling than those for it: plausibly a more challenging task. (shrink)

If it is within our power to provide a significantly better world for future generations at a comparatively small cost to ourselves, we have a strong moral reason to do so. One way of providing a significantly better world may involve replacing our species with something better. It is plausible that in the not-too-distant future, we will be able to create artificially intelligent creatures with whatever physical and psychological traits we choose. Granted this assumption, it is argued that we should (...) engineer our extinction so that our planet's resources can be devoted to making artificial creatures with better lives. (shrink)

Many guidelines and commentators endorse the view that clinical research is ethically acceptable only when it has social value, in the sense of collecting data which might be used to improve health. A version of this social value requirement is included in the Declaration of Helsinki and the Nuremberg Code, and is codified in many national research regulations. At the same time, there have been no systematic analyses of why social value is an ethical requirement for clinical research. Recognizing this (...) gap in the literature, recent articles by Alan Wertheimer and David Resnik argue that the extant justifications for the social value requirement are unpersuasive. Both authors conclude, contrary to almost all current guidelines and regulations, that it can be acceptable across a broad range of cases to conduct clinical research which is known prospectively to have no social value. The present article assesses this conclusion by critically evaluating the ethical and policy considerations relevant to the claim that clinical research must have social value. This analysis supports the standard view that social value is an ethical requirement for the vast majority of clinical research studies and should be mandated by applicable guidelines and policies. (shrink)

Ethicists have long recognized that two necessary features of ethical research are scientific validity and social value. Yet despite a significant literature surrounding the validity component of this dictate, until recently there has been little attention paid to unpacking what the social value component might require. This article introduces a framework for assessing the social value of research, and in particular, for determining whether a given research program is likely to have significant social value of the kind necessary to fulfill (...) the social value requirement. The article goes on to illustrate how this framework can provide a clearer account of the responsiveness requirement, an ethical dictum that is oft-repeated but whose content and value as a guideline in international research remains contested. Although I introduce this conception of social value in the context of the responsiveness requirement, the account offered can, and is intended to, stand alone as a tool for the assessment of the social value of research. As such it can be usefully applied to discussions about the value of comparative effectiveness trials, the assessment of the continued proliferation of me-too drugs and the research done to develop them, the demand for public access to study-generated data, and persistent deficits in the publication of negative results. (shrink)

In this article, I argue that there is no compelling therapeutic ‘need’ for human nuclear genome transfer to prevent mitochondrial diseases caused by mtDNA mutations. At most there is a strong interest in this technology on the part of some women and couples at risk of having children with mitochondrial disease, and perhaps also a ‘want’ on the part of some researchers who see the technology as a useful precedent – one that provides them with ‘a quiet way station’ in (...) which to refine the micromanipulations techniques essential for other human germline interventions and human cloning. In advance of this argument, I review basic information about mitochondrial disease and novel genetic strategies to prevent the transmission of mutated mitochondria. Next, I address common features of contemporary debates and discussions about so-called mitochondrial replacement. First, I contest the cliché that science-and-technology is fast outpacing ethics. Second, I dispute the accuracy of the term ‘mitochondrial replacement’. Third, I provide a sustained critique of the purported ‘need’ for genetically-related children. In closing, I call into question the mainly liberal defense of human nuclear genome transfer. I suggest an alternative frame of reference that pays particular attention to issues of social justice. I conclude that our limited resources should be carefully expended in pursuit of the common good, which does not include pandering to acquired desires. (shrink)

In February 2015 the UK became the first country to legalise high-profile mitochondrial replacement techniques, which involve the creation of offspring using genetic material from three individuals. The aim of these new cell reconstruction techniques is to prevent the transmission of maternally inherited mitochondrial disorders to biological offspring. During the UK debates, MRTs were often positioned as a straightforward and unique solution for the ‘eradication’ of mitochondrial disorders, enabling hundreds of women to have a healthy, biologically-related child. However, many questions (...) regarding future applications and potential users remain. Drawing on a current qualitative study on reproductive choices in the context of mitochondrial disorders, this article illustrates how the potential limitations of MRTs have been obscured in public debates by contrasting the claims made about the future beneficiaries with insights from families affected by mitochondrial disorders and medical experts. The analysis illuminates the complex choices with which families and individuals affected by mitochondrial disorders are faced, which have thus far remained invisible. An argument is presented for improved information for the public as well as an intensification of critical empirical research around the complex and specific needs of future beneficiaries of new reproductive biotechnologies. (shrink)

Mitochondrial replacement techniques, known in the popular media as 'three-parent' or 'three-person' IVFs, have the potential to enable women with mitochondrial diseases to have children who are genetically related to them but without such diseases. In the debate regarding whether MRTs should be made available, an issue that has garnered considerable attention is whether MRTs affect the characteristics of an existing individual or whether they result in the creation of a new individual, given that MRTs involve the genetic manipulation of (...) the germline. In other words, do MRTs affect the qualitative identity or the numerical identity of the resulting child? For instance, a group of panelists on behalf of the UK Human Fertilisation and Embryology Authority has claimed that MRTs affect only the qualitative identity of the resulting child, while the Working Group of the Nuffield Council on Bioethics has argued that MRTs would create a numerically distinct individual. In this article, I shall argue that MRTs do create a new and numerically distinct individual. Since my explanation is different from the NCOB's explanation, I shall also offer reasons why my explanation is preferable to the NCOB's explanation. (shrink)

The classification of techniques used in mitochondrial donation, including their role as purported germ-line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: how should we classify mitochondrial donation techniques?; and what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ-line gene therapy, are typically (...) defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification. To answer the second question, we discuss the relationship between classification and several key ethical issues arising from mitochondrial donation. We conclude that the properties characteristic of mitochondrial inheritance mean that most mitochondrial donation techniques belong to a new sub-class of genetic modification, which we call ‘conditionally inheritable genomic modification’. (shrink)

Jürgen Habermas is regarded as a central bioconservative commentator in the debate on the ethics of human prenatal genetic manipulations. While his main work on this topic, The Future of Human Nature, has been widely examined in regard to his position on prenatal genetic enhancement, his arguments regarding prenatal genetic therapeutic interventions have for the most part been overlooked. In this work I do two things. First, I present the three necessary conditions that Habermas establishes for a prenatal genetic manipulation (...) to be regarded as morally permissible. Second, I examine if mitochondrial replacement techniques meet these necessary conditions. I investigate, specifically, the moral permissibility of employing pronuclear transfer and maternal spindle transfer. I conclude that, according to a Habermasian perspective on prenatal genetic manipulation, maternal spindle transfer and pronuclear transfer are morally impermissible. Maternal spindle transfer is, in principle, morally permissible, but only when we have beforehand preselected a sperm and an egg for our reproductive purpose. These findings are relevant for bioconservatives, both for those who hold a Habermasian stance and for those who hold something akin to a Habermasian stance, because they answer the question: what should bioconservatives do regarding mitochondrial replacement techniques? In fact, the answer to this question does not only normatively prescribe what bioconservatives should do in terms of their personal morality, but it also points towards what kind of legislation regulating mitochondrial replacement techniques they should aim at. (shrink)

Mitochondrial replacement techniques are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity directly, through altering the genetic makeup and physical characteristics of the child, or (...) indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways. (shrink)