Faculty Bibliography

Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria-or 'research involving the recently deceased'-can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor's legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.

Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed consent process; and criteria for waivers of informed consent. In accordance with respect for persons and communities, investigators and IRBs should systematically consider potential group harm when designing and reviewing protocols, respectively. Research participants should be informed about any potential group harm in the consent process. We call for additional public discussion, empirical research, and normative analysis on these issues to determine the right regulatory and policy path forward.

A physician warns of the broader implications of pandemic backlash.

Abstract In Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health (Knopf, 2023), James Tabery traces the ascendance of personalized or precision medicine in America, arguing that America's emphasis on genetics offers more hype than transformational power. In his examination of the power struggles, social relationships, and technological advances that centered the gene in American health policy, Tabery demonstrates how an intensive focus on genetics draws attention away from both the fundamental causes of health disparities and more-effective changes that could be made to developmental, physical, and social environments. American policy-makers, health care institutions, funders, and bioethicists should not let the technological shine and attractive politics of personalized medicine continue to replace the hard but necessary work of addressing sociopolitical causes of disease and illness.

BACKGROUND:While all reproductive-aged individuals with cancer should be offered fertility preservation (FP) counseling, there is little guidance over offers to adolescent and young adults (AYA) with terminal diagnoses, especially when considering posthumous assisted reproduction (PAR). The Enriching Communication skills for Health professionals in Oncofertility (ECHO/ENRICH) trains Allied Health Professionals (AHPs) to improve communication with AYAs with cancer. Little is known about AHPs' role in assisting in FP and PAR decisions. METHODS:This is a cross-sectional survey of ECHO/ENRICH trainees' attitudes and experience with FP and PAR in AYA with terminal cancer. RESULTS:The response rate was 61% (365/601). While 69% felt comfortable discussing FP with terminal AYA after ECHO/ENRICH training, 85% desired further education. The majority (88%) agreed FP should be an option for AYA with cancer, though some agreed offering FP provided false hope (16%) or was a waste of resources (7%). Most shared that avoidance of FP discussions was common practice, especially in the medically fragile, late-stage disease, or among minors. Many attributed lack of conversations to oncology team goals. Only 9% had prior experience with PAR. Many were conflicted about how PAR reproductive material should be gifted and who should be permitted to use PAR. Several raised moral concerns for PAR, or discomfort advising family. Many voiced desire for additional PAR-specific education. CONCLUSION/CONCLUSIONS:ECHO/ENRICH trainees had varied levels of exposure to FP in terminal AYA and limited experiences with PAR. Many expressed uncertainties with PAR, which may be alleviated with further training and transparent institutional policies.