Because maintaining strict confidentiality is often untenable, or even illegal, determining the extent of protections in the postmortem context ultimately entails a weighing of the various interests at stake.
In the September 2014 issue on physicians as agents of social change, Dr. Audiey Kao, editor-in-chief of Virtual Mentor interviewed Dr. Rajiv Shah, administrator of the United States Agency for International Development or USAID.
By failing to follow informed consent protocols and regulations, a researcher engaging in CBPR may inflict permanent harm on the participating community and chill future research among disadvantaged populations.
Assigning community based on race suggests that phenotype reveals something consistent about biology that is equal in standing to factors like weight, dietary habits, smoking history, and whether or not you had rheumatic fever as a child.
CBP researchers are challenged to think strategically about ways to convey their accomplishments and educate their non-CBPR peers about the nature of their research, processes not required of traditional researchers.
Elizabeth Lee Daugherty, MD, MPH and Douglas B. White, MD, MA
Opportunities to advance scientific knowledge may arise during humanitarian crises, but their presence does not justify suspension of the ethical foundations governing human subjects research.
Research is needed to understand mental health effects of cancer at diagnosis, throughout treatment and the post-treatment phases, and in survivorship.
AMA J Ethics. 2017;19(5):486-492. doi:
10.1001/journalofethics.2017.19.5.msoc2-1705.