Large precision health initiatives like the National Institutes of Health’s All of Us campaign raise important ethical questions about consent, privacy, and inclusivity. This month on Ethics Talk, we explore with Dr Katie Johansen Taber and Ysabel Duron strategies for protecting participants and ensuring that diverse communities are represented.
Therapeutic misconception—a false belief that individuals will benefit from participating in research—can bias informed consent. Ethics consultants can help by engaging participants’ and researchers’ understandings of risks and benefits and by asking good questions about the influences of researchers’ enthusiasm.
AMA J Ethics. 2018;20(11):E1100-1106. doi:
10.1001/amajethics.2018.1100.
International debate about human genome editing governance has undergone a paradigm shift and suggests that inclusive public deliberation is still important.
AMA J Ethics. 2019;21(12):E1065-1070. doi:
10.1001/amajethics.2019.1065.