Berger and Miller’s “Health Disparities, Systemic Racism, and Failures of Cultural Competence” supports the claim that “cultural competence” as endorsed by the AAMC and operationalized in me...

Ray and Cooper (2024) present a clear and compelling argument for giving greater prioritization to environmental injustice in the work we do as bioethicists. Their discussion of justice and vulnera...

Cho and Martinez-Martin’s (2023) “Epistemic rights and responsibilities of digital simulacra for biomedicine” presents a comprehensive overview of big data and AI in clinical medicine and research....

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment–related sequelae. Little is known, however, about the role of expectation for survivors’ function. From a mixed–methods study including qualitative interviews and quantitative measures from 40 caregiver–survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) convergent (...) expectations about a less optimistic future, (C) non–convergent expectations about a less optimistic future, and (D) non–convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re–)negotiating, and reaching their expectations of function and independence. (shrink)

Research and clinical trial development for rare diseases pose unique bioethical challenges. Much of the literature on rare diseases focuses on patient advocacy and drug development to manage or cu...

BackgroundThe pursuit of a cure for HIV is a high priority for researchers, funding agencies, governments and people living with HIV (PLWH). To date, over 250 biomedical studies worldwide are or have been related to discovering a safe, effective, and scalable HIV cure, most of which are early translational research and experimental medicine. As HIV cure research increases, it is critical to identify and address the ethical challenges posed by this research.MethodsWe conducted a scoping review of the growing HIV cure (...) research ethics literature, focusing on articles published in English peer-reviewed journals from 2013 to 2021. We extracted and summarized key developments in the ethics of HIV cure research. Twelve community advocates actively engaged in HIV cure research provided input on this summary and suggested areas warranting further ethical inquiry and foresight via email exchange and video conferencing.DiscussionDespite substantial scholarship related to the ethics of HIV cure research, additional attention should focus on emerging issues in six categories of ethical issues: (1) social value (ongoing and emerging biomedical research and scalability considerations); (2) scientific validity (study design issues, such as the use of analytical treatment interruptions and placebos); (3) fair selection of participants (equity and justice considerations); (4) favorable benefit/risk balance (early phase research, benefit-risk balance, risk perception, psychological risks, and pediatric research); (5) informed consent (attention to language, decision-making, informed consent processes and scientific uncertainty); and (6) respect for enrolled participants and community (perspectives of people living with HIV and affected communities and representation).ConclusionHIV cure research ethics has an unfinished agenda. Scientific research and bioethics should work in tandem to advance ethical HIV cure research. Because the science of HIV cure research will continue to rapidly advance, ethical considerations of the major themes we identified will need to be revisited and refined over time. (shrink)