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All in the Family: Privacy Laws and Precision Medicine

Precision medicine focuses on tailoring medical treatment based on genetic, environmental, and lifestyle factors. Family health histories are a common component of a standard medical exam, which collects basic clinical data about patients and their family members. Such information has always been helpful in assessing overall patient health. But today, clinicians may use the information gathered from a simple family health history to perform health risk assessments for certain cancers or to formulate personal health recommendations. While family members serve as the primary resource to obtain information, archives that house medical information also serve as an important site for medical genealogists to mine for life saving information. The purpose of this article is to review the federal and state laws that impact the archivist’s role in the world of precision medicine and family health genealogy. It includes an introduction to family medical histories and their use in precision medicine; a brief review of privacy and medical record laws, including proposed changes to privacy laws by the Trump administration; and, finally, potential areas for change in the law.