Protecting pieces of us: The need for Indigenous perspectives in the fuzzy world of biometric data regulation.

Kukutai, Tahu · Science · 2025

expert_opinion · Level V

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Abstract

The bankruptcy filing by commercial genetic testing company 23andMe has put the spotlight, once again, on the limits and effectiveness of data privacy laws. Since the company was founded in 2006, it has amassed a database of around 15 million customers who shared their genetic and health information in return for insights into their ancestry, traits, disease risks, and other aspects. About 80% also opted to have their deidentified data shared for medical research purposes, which included drug discovery research involving companies such as GlaxoSmithKline and Pfizer.

Medical subject headings