Shelly Simana (Harvard Law School), Gene Stewards: Rethinking Genome Governance, 14 UC Irvine L. Rev. (forthcoming 2024):
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.”