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.
Clinically and ethically relevant questions are related to patient safety, therapeutic efficacy, equitable access, and global governance over humanity’s genetic legacy.
AMA J Ethics. 2019; 21(12):E1079-1088. doi:
10.1001/amajethics.2019.1079.
Gene editing reminds professionals and the public that this technology’s reach goes beyond treating somatic disease to germline consequences yet unknown.
AMA J Ethics. 2019; 21(12):E1056-1058. doi:
10.1001/amajethics.2019.1056.
The DSM-5 Task Force’s handling of the ethical controversy over the bereavement exclusion demonstrates the need for more inclusive deliberative processes.
AMA J Ethics. 2017; 19(2):192-198. doi:
10.1001/journalofethics.2017.19.2.pfor2-1702.
Grace Kim, Uriel Sanchez Molina, and Altaf Saadi, MD, MSHPM
Undocumented patients can be subject to discrimination, reporting, detention, or deportation in violation of the Health Insurance Portability and Accountability Act, so what goes in the record is critical.
AMA J Ethics. 2019; 21(1):E8-16. doi:
10.1001/amajethics.2019.8.
Being undocumented is a risk factor for mental illness, and immigration status relates prominently to overall health. That’s enough to consider it protected health information under the Health Insurance Portability and Accountability Act Privacy Rule.
AMA J Ethics. 2019; 21(1):E32-37. doi:
10.1001/amajethics.2019.32.