Journal of Bioethical Inquiry最新文献

There is wide consensus among bioethicists about the importance of autonomy when determining whether or not a patient has the right to refuse life-saving treatment (LST). In this context, autonomy has typically been understood in terms of the patient's ability to make an informed decision. According to the traditional view, decision-making capacity (DMC) is seen as both necessary and sufficient for the right to refuse LST. Recently, this view has been challenged by those who think that considerations of authenticity and putative counterexamples should lead us to revise the traditional account. In this paper, we respond to these revisionist arguments, and we defend the traditional view according to which we have autonomy-based reasons to respect a patient's decision to refuse LST if and only if she has DMC.

Perspectives of IVF users on their spare embryos is a less explored subject in the Indian context despite the country's population and abundance of IVF clinics. We conducted a qualitative study using in-depth interviews in a selected district of the Indian state of Karnataka. Seven individuals were recruited independently of any assistance from an IVF clinic. The interviews explored participants' knowledge and perception of the spare embryos using a set of guiding questions exploring the theme of the informed consent process, views on research, preferences for embryo donation, the role of family and the dynamics of decision-making, amongst other things. The interviews were qualitatively analysed using Corbin and Strauss's grounded theory approach. Our findings reveal that the participants do not learn about the prospects of spare embryos from the very start of their IVF journeys, and they may not be informed about the various options available to decide the fate of the spare embryos. Irrespective of their views on research and moral perceptions of embryos, participants expressed a sense of responsibility and ownership towards their embryos and a general reluctance to donate them. Our findings have implications for guiding future inquiries on this subject, which can better the informed consent process and unravel the role of ownership in the ethics of spare embryos in the Indian context.

This article attempts to highlight the importance of including research sustainability as imperative when assessing human medical research in terms of ethical principles. Using a scoping review of recent literature, the complexity of research sustainability is highlighted with key themes and concepts surrounding this important topic being recognized and discussed. An overall paucity of guidance documents was identified and recommendations have been made to practically address this deficiency. An example of a research sustainability evaluation tool which is currently being piloted has been provided for possible adaptation and use by Ethics Committees and Institutional Review Boards to bolster the concept and inclusion of sustainability during the research approval process.

In this paper, I discuss the ethical issues related to deception in human subject research in terms of honesty. First, I introduce the background and suggest the conception of honesty that understands it as involving respect for the right not to be deceived (RND). Next, I examine several ways to address the ethical issues of deceptive elements in the human subject research and show why they fail to adequately meet the demand of honesty. I focus on how to make an honest research plan and examine after participation and before participation phases in turn. Then I conclude by suggesting possible strategies to minimize dishonesty in human subject research.

Contemporary genome editing techniques have made genomic intervention-from microorganism to human-more accessible, easier to use, and more accurate than previous methods. We argue that, notwithstanding its merits in treating and preventing disease in humans, genome editing represents a potential threat for domestic and international security, requiring an integrated approach in regulating, detecting, preventing, and mitigating the risk of its use for malicious purposes. Despite the global regulatory ambitions of the 2021 WHO framework, we see insufficient attention given to the future prospect of dual-use genomic technology. Drawing parallels with the nuclear field, we suggest tentative practical steps for a way forward in dealing with genome editing technologies, such as: 1) adapting national (bio)security and defence strategies to include genome editing as a possible threat (with conceivable WMD potential); 2) enhancing the international dialogue on genome editing and raising the issue at the highest level; 3) working towards a global, legally binding verification mechanism; 4) tracking genome editing technologies.

This study focuses on issues related to living organ donation for transplantation in Bangladesh. The policy and practice of living organ donation for transplantation in Bangladesh is family-oriented: close relatives (legal and genetic) are the only ones allowed to be living donors. Unrelated donors, altruistic donors (directed and non-directed), and paired/pooled or non-directed altruistic living donor chains-as many of these are implemented in other countries-are not legally allowed to serve as living donors in Bangladesh. This paper presents normative arguments explaining why the family-oriented nature of regulations and practices surrounding living organ donation for transplantation is essential for Bangladesh. In this article, I specifically argue that if the Bangladesh government revises the current biomedical policy robustly beyond relatives and allows unrelated donors to donate organs legally, this may foster organ selling due to the poverty and corruption problems in Bangladesh. The family-oriented requirement of the living organ donation policy and practice is defensible and morally justifiable as it preserves common notions of the family unit and family bonding in Bangladesh. Maintaining the current living-donation regulations and promoting deceased donation is the way forward, as this safely preserves the family values, protects against organ selling, and increases access to organ transplantation.

The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, our article delves into the viewpoints and experiences of medical geneticists in Germany and Switzerland. Twenty qualitative interviews were analysed employing reflexive thematic analysis. Participants' responses revealed substantial uncertainties and divergences in their understanding and application of the concept. It seems to cause distress since many geneticists stated that the principle was difficult to put into clinical practice and was no longer ethically justified given the increasing likelihood of therapeutic implications resulting from genomic testing outcomes. The insights provided by our qualitative empirical study accord with the ongoing theoretical debate regarding the definition, legitimacy, and feasibility of the principle. An adequately nuanced understanding and application of non-directiveness seems crucial to circumvent the risks inherent in the principle, while promoting patient autonomy and beneficence.

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.

Objective: To examine i) how ethical frameworks can be used in concrete cases of parent-doctors' disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks.

Design: We did a case analysis of a concrete case of parent-doctor disagreement in the grey zone using two ethical frameworks: the best interest standard and the zone of parental discretion.

Results: Both ethical frameworks entailed similar advantages and challenges. They have the potential 1) to facilitate decision-making because they follow a structured method; 2) to clarify the situation because all relevant ethical issues are explored; and 3) to facilitate reaching an agreement because all parties can explain their views. We identified three main challenges. First, how to objectively evaluate the risk of severe disability. Second, parents' interests should be considered but it is not clear to what extent. Third, this is a value-laden situation and different people have different values, meaning that the frameworks are at least partially subjective.

Conclusions: These challenges do not mean that the ethical frameworks are faulty; rather, they reflect the complexity and the sensitivity of cases in the grey zone.