UC Irvine Law Review

Various entities, such as genetic testing and biotech companies, biobanks, research institutions, and government agencies, collect, analyze, and share human genetic material and information. When maximizing the benefits they obtain from these resources, such entities frequently employ exploitative practices that take advantage of power and information asymmetries. For example, they require individuals to waive property rights over genetic material and information, use these resources for purposes other than those for which they were obtained without the individuals’ knowledge or comprehension of the implications, or collect these resources surreptitiously. Exploitative practices steer genetic material and information toward the ends of powerful entities while undermining individuals’ property and privacy interests. They result in “appropriative harms.”

The existing legal framework in the United States is fragmented, excessively narrow, and riddled with inconsistencies. Consequently, it falls short of effectively addressing exploitative practices and mitigating the profound power and information asymmetries in the genetic sphere. This Article addresses this gap by laying the theoretical and regulatory groundwork for future legal reform. It creates a new statutory category of “Gene Stewards,” proposing to impose quasi-fiduciary duties of loyalty and care on every powerful entity in the genetic  sphere, whether public or private. These duties highlight the value of trust and mandate that powerful entities act ethically and responsibly as stewards of identifiable and de-identified genetic material and information.