Genetic Privacy in the “Big Biology” Era: The “Autonomous” Human Subject

Authors

Marilyn Cech

Abstract

What do the Golden State Killer, the Havasupai Tribe, and Henrietta Lacks have in common? None of these individuals gave informed consent for the particular research uses of their genetic material. Biotechnological advancements have made what was previously unimaginable—just decades or even years ago—a common reality. Unfortunately, the law evolves at a much slower rate than science. Thus, it may take a radical philosophical shift to make way for new legal frameworks that can provide adequate protections that keep up with scientific progress and withstand the test of time. Currently, a person’s “bio-unique data,” namely a person’s biological material and genetic information, is neither protected as “personally identifiable information” nor “protected health information” under United States federal law. Therefore, our recent breakthroughs in DNA genotyping and sequencing leave individuals particularly vulnerable. This Note uses a discussion of the laws regulating research on human subjects, a group which the world has unanimously agreed must give informed consent, to propose a shift in privacy regulation towards a framework more equipped to handle the new challenges of genetic privacy.

Recommended Citation

Marilyn Cech, Genetic Privacy in the “Big Biology” Era: The “Autonomous” Human Subject, 70 Hastings L.J. 851 (2019).
Available at: https://repository.uclawsf.edu/hastings_law_journal/vol70/iss3/6