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.
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.
PSOs are not required to share their data, which limits the ability to achieve a much-needed national perspective. Regardless, the are a step in the right direction.
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.