Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law

Journal of Law, Medicine and Ethics 48 (1):126-141 (2020)
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Abstract

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.

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Leslie Wolf
College of DuPage