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.
An emerging medical ethics issue is whether to delay posting pathology reports to electronic health records (EHR) to allow clinicians time to follow up.
AMA J Ethics. 2016;18(8):826-832. doi:
10.1001/journalofethics.2016.18.8.pfor1-1608.
Wendy Foth, Carol Waudby, and Murray H. Brilliant, PhD
Certificates of confidentiality, issued by the Department of Health and Human Services, allow researchers to refuse to disclose identifying information about research participants in any civil, legal, or other government proceeding. This level of protection is said to promote enrollment in research studies.
For patients to adopt personal health records, they must be convinced of the value the technology has for them. Framing that value in a way that actively engages patients as collaborators in their health care management will not only empower the individual but improve patient-clinician relationships overall.