Journal of Bioethical Inquiry最新文献

As the science and technology of the brain and mind develop, so do the ways in which brains and minds may be surveilled and manipulated. Some cognitive libertarians worry that these developments undermine cognitive liberty or "freedom of thought." I argue that protecting an individual's cognitive liberty undermines others' ability to use their own cognitive liberty. Given that the threatening devices and processes are not relevantly different from ordinary and frequent intrusions upon one's brain and mind, strong protections of cognitive liberty may proscribe neurotechnological intrusions but also ordinary intrusions. Thus, the cognitive libertarian position "hog-ties" others' use of their own liberties. This problem for the cognitive libertarian is the same problem that ordinary libertarianism faces in protecting individual rights to property and person. But the libertarian strategies for resolving the problem don't work for the cognitive libertarian. I conclude that the right to mental privacy is weaker than what cognitive libertarians want it to be.

The struggle over legal abortion access in the United States is a religious controversy, not a scientific debate. Religious activists who believe that meaningful individual life (i.e., "personhood") begins at a specific "moment-of-conception" are attempting to pass laws that force this view upon all pregnant persons, irrespective of their medical circumstances, individual preferences, or personal religious beliefs. This paper argues that such actions promote a constitutionally prohibited "establishment of religion." Abortion policy in a secular state must be based upon scientifically accurate biology, not unprovable theological presuppositions. The scientific facts regarding human pregnancy do not support the position that personhood begins with fertilization-at which point a pregnancy does not yet even exist. Abortion policy should regard the embryo/fetus as part of the pregnant individual's body until delivery. We argue that individual "personhood" only begins when the latent potentialities of the fetal nervous system are actualized in the newborn after delivery. The paper argues that instantiating non-scientific beliefs concerning embryonic/fetal "personhood" into the law as the basis for abortion policy establishes a state-sponsored religion. The protection of religious liberty requires that abortion be decriminalized. Abortion should be treated like any other medical procedure and regulated similarly. To protect both religious freedom and sound medical practice, individual legal personhood should be recognized as beginning only at birth.

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.

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.

Victoria's Voluntary Assisted Dying Act 2017 (Vic) became the first state law to permit VAD in Australia under limited circumstances from June 2019. Before this, many palliative care physicians relied on the doctrine of double effect (DDE) to justify the use of pain relievers for terminally ill patients that were known to hasten death. The DDE claims that there is a morally significant difference between intending evil and merely foreseeing some bad side-effect will occur as a result of one's actions. This article argues that the legacy of the DDE is promoting inequitable access to VAD in Victoria due to the assumption that death represents an "evil" for the patient and that the intentions of physicians providing VAD cannot be trusted. The latter claim relies on two common objections to the DDE: the risk of "purifying the intentions" and the issue of "closeness" when evaluating moral acts under this theory.

With the increasing prices of newly approved anti-cancer treatments contributing to rising healthcare costs, healthcare systems are facing complex economic and ethical dilemmas. Especially in countries with universal access and mandatory health insurance, including many European countries, the organizing of funding or reimbursement of expensive new treatments can be challenging. When expensive anti-cancer treatments are deemed safe and effective, but are not (yet) reimbursed, ethical dilemmas arise. In countries with universal healthcare systems, such as the Netherlands, this gives rise to a rather new ethical dilemma: should patients be allowed to pay out of pocket, using private funds, for medical treatments? On the one hand, to allow patients to pay for treatments out of pocket would be in line with the medical-ethical principles of beneficence and autonomy. On the other hand, allowing patients to pay out of pocket for anti-cancer treatments may lead to unequal access to medical treatments and could be considered unfair to patients who are less well-off. Thus, it could undermine the values of equality and solidarity, on which the Dutch healthcare system is built. Furthermore, out-of-pocket payments could potentially lead to financial hardship and distress for patients, which would conflict with the principle of non-maleficence. Does this mean that patients can rightfully be denied access to approved but not (yet) reimbursed anti-cancer treatments? In this article, we will use the Dutch healthcare system, which is based on equal access and solidarity, as a case study to draw attention to this-currently relatively unknown and unresolved-dilemma and to clarify the values at stake. This article contributes to current discussions about the societal problem of rising healthcare costs by informing policymakers, healthcare professionals, and ethicists about the ethical dilemma of out-of-pocket payments in universal healthcare systems, and aims to support health authorities, policymakers and health professionals in developing policy for whether to allow out-of-pocket payment-based access to newly approved but (too) expensive anti-cancer treatments.

Objective: Approved medicines are not always sufficient to address the needs of patients so several legal pathways exist to enable access to unapproved medicines for treatment purposes. This article is the first to provide an in-depth analysis of this regulatory framework that governs access to unapproved medicines in Australia with a specific focus on affordability-motivated access.

Methods: Legislation, regulations, and guidelines were critically analysed to identify the de jure basis for importation and supply of unapproved medicines in Australia.

Results: Most pathways for accessing unapproved medicines do not permit importation or supply for non-clinical justifications such as affordability. This is problematic as it fails to recognize that a medicine being unavailable is equivalent to a medicine being unaffordable for a patient. Better alignment can be achieved by permitting importation and supply of unapproved medicines if justified by good medical practice, which includes considerations of equity and access. It is also shown that the provisions of the Special Access Scheme Category A could be interpreted broadly to expand its use.

Conclusions: As medicines become more expensive and cost-barriers to treatment are more prevalent, ignoring affordability as a valid criterion for importing medicines is a significant oversight of current regulation.

Hospital ethics committees (HECs) traditionally focus on clinical ethics but are increasingly recognized for their potential role in addressing organizational ethics, particularly in the allocation of charity care resources. This commentary explores the expanded role of HECs in charity care allocation, emphasizing the core ethical principles of justice, transparency, and accountability. We discuss the need for HECs to develop expertise in organizational ethics, differentiate between emergency and chronic resource allocation, and apply value-based insurance design principles to set service boundaries. By adopting an egalitarian approach to justice, HECs can help reduce health disparities and ensure equitable access to charity care. Enhanced transparency and accountability through clear criteria, regular audits, and public reporting are also vital. This paper underscores the importance of integrating these ethical principles into healthcare resource allocation to promote health equity and maintain the financial sustainability of healthcare institutions.

As a field, ethics is driven by the desire to help guide human life and human activities. Yet, what are the standards or guideposts indicating that a given policy or practice change actually contributes meaningfully to such desires and aspirations? In other words, how do we know if we have achieved meaningful ethical outcomes and enactment processes? Unfortunately, there are many examples of ethically oriented actions that were well intentioned but carried out in a way that undermined some of the values they intended on promoting or led to unexpected undesirable outcomes. In this paper, building on an account of ethics as a pragmatist pursuit of deliberative wisdom, I identify and discuss four procedural guideposts which can help evaluate if a process of inquiry is an ethical one oriented toward human flourishing. First, situational awareness and continuity designates the need to keep in sight the nature of the situation at stake to ensure that the enactment process does not derail from a cardinal human flourishing orientation. Second, a meaningful ethical enactment should distribute opportunities for participation such that it is not only one's autonomy (e.g., the ethicist) that is developed and exercised but that positive relationships are also fostered through the growth of others. Third, enactments must strive for more than simple avoidance of encroachment of wrongs but aim for the promotion of praiseworthy practices that pursue what is envisioned as being the better and most compelling vision. Fourth, an ethics process should be conducive of personal growth and mutual learning.