Journal of Bioethical Inquiry最新文献

Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa Māori-consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants' discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model.

It is an open question when procreation is justified. Antinatalists argue that bringing a new individual into the world is morally wrong, whereas pronatalists say that creating new life is morally good. In between these positions lie attempts to provide conditions for when taking an anti or pronatal stance is appropriate. This paper is concerned with developing one of these attempts, which can be called qualified pronatalism. Qualified pronatalism typically claims that while procreation can be morally permissible, there are constraints on when it is justified. These constraints often concern whether an individual is motivated to procreate for the right reasons. For instance, if someone is not sufficiently concerned with the child's future welfare, the qualified pronatalist will say that procreation is not justified. Moreover, David Wasserman says that this concern forms a role-based duty. That is, prospective parents have special duties to be concerned for the child's future welfare by virtue of the role they occupy. In this paper, I argue that a proper examination of a prospective parent's role-based duties entails that more is needed to justify procreation. Bringing a new person into the world leaves fewer resources for people who already need them, and the current size of the human population is unsustainable from a planetary point of view. Therefore, even if there is nothing wrong with procreation per se, the external condition of overpopulation, and its ensuing public health issues, plausibly gives rise to a role-based duty that prospective parents must account for when deciding whether to procreate.

Without trust there is no credible human health research (HHR). This article accepts this truism and addresses a crucial question that arises: how can trust continually be promoted in an ever-changing and uncertain HHR environment? The article analyses long-standing mechanisms that are designed to elicit trust-such as consent, anonymization, and transparency-and argues that these are best understood as trust represented by proxies of trustworthiness, i.e., regulatory attempts to convey the trustworthiness of the HHR system and/or its actors. Often, such proxies are assumed to operate as markers that trust exists or, at least, has not been lost. But, since trust can neither be "built" nor "secured," this is a precarious assumption. Worryingly, there is no existing theoretical account of how to understand and evaluate these proxies of trustworthiness as part of a trusted HHR ecosystem. To remedy this, the paper argues for a radical reimagining of trust and trustworthiness as performative acts that ought to be understood in relation to each other and by reference to the common values at stake. It is shown that proxies of trustworthiness are the operational tools used to perform trustworthiness. It advocates for a values-based approach to understanding the relationship between trust and trustworthiness. This establishes a strong basis for an evaluative framework for proxies of trustworthiness, i.e., to determine how to perform trustworthiness well. Five common proxies in HHR are scrutinized from a values perspective. The contribution is to provide a far-reaching normative and practical framework by which existing and future proxies of trustworthiness can be identified, assessed, maintained, or replaced in rapidly changing HHR regulatory ecosystems where trust itself is crucial to the success of the entire HHR enterprise.

An ethical and legal framework is needed to regulate the rapidly developing human brain organoid research field properly. However, considering the legal issues involved in human brain organoid research remains underdeveloped and scattered. This article reviews the legal issues of human brain organoid research, grouping them into the following five broad themes: (1) consciousness, (2) legal status, (3) consent, (4) ownership, and (5) transplantation. The issues in each topic include both the urgent (e.g., appropriate forms of consent) and the speculative (e.g., protection of conscious human brain organoids). Therefore, we have attempted to be as explicit as possible about the timescale within which each issue will be realized and to prioritize each. Examining these issues has revealed legal issues specific to human brain organoid research and issues common to research in other fields. Further discussion of human brain organoid research from a legal perspective is needed in the future, considering discussions in related fields.

I defend a novel account of the wrong of subjecting people to non-consensual sterilization (NCS), particularly in the context of the state-sponsored eugenics programmes once prevalent in the United States. What makes the eugenicist practice of NCS distinctively wrong, I claim, is its dehumanizing core: the fact that it is tantamount to treating people as nonhuman animals, thereby expressing the degrading social meaning that they have the value of animals. The practice of NCS is prima facie seriously wrong partly, but crucially, on these grounds. I consider and reject accounts of the wrong of NCS that make no reference to its animalizing character, such as that it violates victims' (procreative) autonomy, amounts to treating them merely as a means, inflicts psychological harm on them, or constitutes an affront to their human dignity. My discussion suggests that the critical vocabulary of bioethics should be expanded beyond talk of rights violations, benefits and harms, and equal treatment-and that the language of dehumanization is indispensable to bioethicists.

Bio-heteronormative conceptions of the family have long reinforced a nuclear ideal of the family as a heterosexual marriage, with children who are the genetic progeny of that union. This ideal, however, has also long been resisted in light of recent social developments, exhibited through the increased incidence and acceptance of step-families, donor-conceived families, and so forth. Although to this end some might claim that the bio-heteronormative ideal is not necessary for a social unit to count as a family, a more systematic conceptualization of the family-the kind of family that matters morally-is relatively underexplored in the philosophical literature. This paper makes a start at developing and defending an account of the family that is normatively attractive and in line with the growing prevalence of non-conventional families and methods of family-formation. Our account, which we call a constitutive-affirmative model of the family, takes the family to be constituted by an ongoing process of relevant affective and affirmative relations between the putative family members.

Australia is committed to looking at ways to modernize its healthcare delivery further by integrating digital health. Advance Care Planning (ACP) is an area of healthcare that would likely benefit from further digitalization. However, while greater integration of technology in the delivery of ACP could help improve practices and lead to increased uptake, the extent to which this is achievable will be influenced, in part, by current approaches to ACP regulation. This article canvasses recent developments and trends in Australian law relevant to ACP and reflects on how these developments may impact the further digitalization of ACP.

Surrogacy and adoption are both family-making measures subject to extensive domestic and international regulation. In this nationally representative survey study (N = 1552), we explore public attitudes to various forms of surrogacy and adoption in the United Kingdom, in response to an early proposal to allow "double donor" surrogacy as part of the ongoing legal reform project. We sought to both gauge public moral support for adoption and surrogacy generally, the effect that prospective parents' fertility had on this support, and the extent to which the public would find equivalencies between "double donor" surrogacy (DDS) and planned private adoption (PPA) to be morally significant. Our findings indicate that whilst there is broad baseline support for all forms of adoption and surrogacy, this support increases significantly when one or both prospective parents are infertile. These findings also suggest that the language in which a family-making arrangement is characterized has a greater influence on moral support for the arrangement than practical features such as the biological relationship (or absence thereof) between one/both parents and the child.