When a seriously ill mature minor and his parent disagree about his receiving an experimental intervention, who should decide what treatment he will receive?
Conducting community-based research in the community where one resides demands careful planning, sensitivity to community members’ privacy, and a strong commitment to full and respectful communication.
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.
The differences between CBPR and traditional research have been enumerated, but how to overcome them is still up for discussion, collaboration with community members is advocated, and examples are given.
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.