Hastings Center Report最新文献

In the September-October 2024 issue of the Hastings Center Report, two pieces examine attitudes toward and policy on medical aid in dying (MAID). An essay by Anna Elsner and colleagues analyzes terminology, including euphemistic language, used in Canada and other countries to refer to this practice. The authors recommend explicit public discussion of the values at stake in the use of this terminology. An article by Em Walsh concerns a subset of people who could become eligible for MAID under Canada's proposed expansion of eligibility for this assistance: people suffering from poverty-induced depression. Cautioning that the expansion of PAD could exacerbate inequality, Walsh offers six recommendations for policy-makers’ consideration. The issue's lead article, by Eric Juengst and colleagues, focuses on governance issues that could be raised by human genome editing research that aims to strengthen individuals’ resistance to disease beyond what is regarded as the human functional range. Juengst et al. identify and analyze three potential principles that could help policy-makers navigate what can be a blurry line between goals of prevention and enhancement in human genome editing research.

This letter responds to a letter by Moti Gorin in the same issue, September-October 2024, of the Hastings Center Report.

This letter responds to the Other Voices commentaries “Troubling Trends in Health Misinformation Related to Gender-Affirming Care,” by Stef M. Shuster and Meredithe McNamara; “Values and Evidence in Gender-Affirming Care,” by Os Keyes and Elizabeth Dietz; “Breaking Binaries: The Critical Need for Feminist Bioethics in Pediatric Gender-Affirming Care,” by Lisa Campo-Engelstein, Grayson Jackson, and Jacob Moses; and “Minors Lack the Autonomy to Consent to Gender-Affirming Care: Best Interests Must Be Primary,” by John C. Bester, in the May-June 2024 issue of the Hastings Center Report.

In The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No, bioethicist Carl Elliot seeks to understand people who blow the whistle on unethical human research projects. The book compares whistleblowers in six scandals, and Elliot's main explanation for why someone becomes a whistleblower is personal honor. Exploring what led to or might have prevented these scandals, Elliot is critical of institutional review boards, and he links research ethics violations to injustices in everyday clinical care and medical training and to power imbalances in medical institutions. Some of the clinical and scientific details in the cases suggest other moral and ethical problems and the increasing irrelevance of the practice-research distinction. Whistleblowers are also needed for the mass experiments that occur when practices diffuse without robust evidence and for the structural inequalities on which American clinical care, teaching, and research depend.

This essay examines the impact of linguistic choices on the perception and regulation of assisted dying, particularly in Canada. It argues that euphemistic terms like “medical assistance in dying” and its acronym, “MAID,” serve to normalize the practice, potentially obscuring its moral gravity. This contrasts with what is seen in Belgium and the Netherlands, where terms like “euthanasia” are used, as well as in France and the United Kingdom, where terminology remains divisive and contested. By tracing the evolution of these terms and what they reveal about different cultural and legal approaches, this essay sheds light on the politics of language in end-of-life discourses. It suggests that the shift toward euphemistic language reflects a broader discomfort with death that can shape public attitudes and legal frameworks. It calls for a more transparent, philosophically grounded approach to terminology and suggests that continued debate about semantics is necessary to capture the complexities and ethical significance of assisted dying.

Researchers and practitioners are increasingly using machine-generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is often understood to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use.