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.
Physicians, committees, and guardians all make decisions for unrepresented patients in the US. This article considers a “tiered” approach as an alternative.
AMA J Ethics. 2019;21(7):E587-593. doi:
10.1001/amajethics.2019.587.
When patients are unable to express their wishes and do not have surrogates or advance directives, which and whose values should inform decision making for them? We discuss ethical complexities of caring for unrepresented patients.