Because maintaining strict confidentiality is often untenable, or even illegal, determining the extent of protections in the postmortem context ultimately entails a weighing of the various interests at stake.
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.
Anne-Marie Laberge, MD, PhD and Wylie Burke, MD, PhD
Physicians and counselors must address the importance of communicating genetic test results to family members in the pre-test counseling and informed-consent processes prior to testing.