Faculty Bibliography

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.

The growing amount of data produced through digital technologies holds great promise for advancing behavioral research. Scholars worldwide now have the chance to access an incredible amount of personal information, thanks to the digital trace users continuously leave behind them. Private corporations play a crucial role in this scenario as the leading collectors of data on users, thus creating new incentives for partnerships between academic institutions and private companies. Due to the concerns that academic-company partnerships might raise and the ethical issues connected with Big Data research, our study explores the challenges and opportunities associated with the academic use of corporate data. We conducted 39 semi-structured interviews with academic scholars (professors, senior researchers, and postdocs) involved in Big Data research in Switzerland and the United States. We also investigated their opinions on using corporate data for scholarly research. Researchers generally showed an interest in using corporate data; however, they coincidentally shared ethical reservations towards this practice, such as threats to research integrity and concerns about a lack of transparency of companies' practices. Furthermore, participants mentioned issues of scholarly access to corporate data that might both disadvantage the academic research community and create issues of scientific validity. Academic-company partnerships could be a positive development for the advancement of scholarly behavioral research. However, strategies should be implemented to appropriately guide collaborations and appropriate use of corporate data, like implementing updated protocols and tools to govern conflicts of interest and the institution of transparent regulatory bodies to ensure adequate oversight of academic-corporate research collaborations.

Under what circumstances, is it ethical to perform tumor surgery on a brain-dead individual? The neurosurgeons at Brigham and Women's Hospital were recently faced with such a question when asked to operate on a 28-year-old man who was pronounced brain-dead secondary to a severe brain-stem injury. His advanced directives clearly documented a desire for organ donation. During his transplant work-up, cranial imaging suggested a possible cerebellar mass of unknown etiology that was concerning for metastatic disease. Despite negative full body imaging, the neurosurgical team was asked to perform an open biopsy of the intracranial lesion to rule out occult systemic cancer. This case invites many nuanced questions related to the decisions surgeons and the broader medical community must make in the face of pursuing viable organs for the many in need. What is the moral standing and personhood eligibility of brain-dead individuals? What is the scope of medical interventions and procedures that surgeons are ethically bound to carry out? How ought the desire for increased medical intervention to try to save organs be balanced with practical limitations given limited medical resources?