Lyubov Slashcheva, Rick Rader, MD, and Stephen B. Sulkes, MD
Designation of people with intellectual and developmental disabilities as a medically underserved population would not solve problems of access to care.
AMA J Ethics. 2016;18(4):422-429. doi:
10.1001/journalofethics.2016.18.4.pfor1-1604.
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.
Rebekah Davis Reed, PhD, JD and Erik L. Antonsen, PhD, MD
Though the National Aeronautics and Space Administration’s collection of disaggregated genetic data for occupational surveillance and research raises numerous privacy concerns, the Genetic Information Nondiscrimination Act of 2008 allows genetic information to be used to develop personal pharmaceuticals.
AMA J Ethics. 2018;20(9):E849-856. doi:
10.1001/amajethics.2018.849.
The meaning of “disability” has shifted with US public policy changes over time. People with disability are protected under civil rights law, and open questions remain about whether and when policy-level interventions and reasonable accommodations create equal opportunity.
AMA J Ethics. 2016;18(10):1025-1033. doi:
10.1001/journalofethics.2016.18.10.pfor2-1610.
There is a market for direct-to-consumer genetic testing and a need for better consumer information and more regulation of tests and testing laboratories.