ELSI Friday Forum | ELSI and the Sale of Genetic Data: The Case of 23andMe
with speakers Sara Gerke, JD, Neil Richards, JD, and moderator Anya Prince, JD.
Genetic and associated health data of millions are collected and held by biobanks, DTC companies, pharmacies, academic medical centers, hospitals, technology companies and other entities. These institutions are increasingly facing financial failure or significant losses of revenue that make them targets for takeover or sale of their data. Transfer of data in these contexts raises a host of ethical and legal issues, especially because such transfer falls into several regulatory gaps. This session will use the bankruptcy of 23andMe as a case to outline salient ethical and legal issues, such as privacy and discrimination, and to launch a discussion of how they might differ for other entities such as not-for-profits.