The use of genetic testing sponsored by biotechnology or pharmaceutical companies in exchange for de-identified patient data is increasing. While providing testing that would otherwise potentially not be affordable, the practice raises a host of questions about the coverage of test costs by for-profit companies, intended and future uses of patient de-identified data, data sharing, and risk for patient re-identification–all of which further underscore the importance of consent. Yet, what constitutes informed consent in the context of sponsored genetic testing? What responsibilities do healthcare providers have when consenting patients for sponsored genetic testing, including information to provide about companies’ practices? What “say” do patients have–or should have–on this issue? This session will consider these issues, including benefits and risks of sponsored genetic testing and the underpinning notions of patient vulnerability, equity, access, and informed consent.
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