Benjamin T Van Meter, ‘Demanding Trust in the Private Genetic Data Market’

INTRODUCTION
… This Note argues that to prevent the most damaging consequences of the trade in genetic data, US law should impose tailored fiduciary duties on private genetic testing companies to ensure that their business practices do not harm their own customers. These testing companies rely on their customers’ genetic information to turn a profit, while all of the risk of this information’s exposure or misuse falls on customers. This Note will proceed as follows: Part I will describe the fundamental difficulties of de-identifying and aggregating genetic data to the point that it cannot be reidentified; Part II discusses how de-identification and aggregation serves to obscure customers’ rights in their own genetic data while allowing testing companies to evade federal privacy laws; Part III argues that Ancestry and 23andMe, genetic testing’s two largest companies, use privacy agreements that largely deprive customers of any rights in their genetic data in order to keep the data marketable to as many buyers as possible, and Part IV argues that the concept of an information fiduciary should be applied to private genetic testing companies to counter these companies’ massive informational advantage over their customers and to guard against genetic data’s potential for abuse …

Benjamin T Van Meter, Demanding Trust in the Private Genetic Data Market (2020) 105 Cornell Law Review 1527.

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