Law Commons^™

The Genetic Information Nondiscrimination Act At Age 10: Gina’S Controversial Assertion That Data Transparency Protects Privacy And Civil Rights, Barbara J. Evans

William & Mary Law Review

The genomic testing industry is an edifice built on data transparency: transparent and often unconsented sharing of our genetic information with researchers to fuel scientific discovery, transparent sharing of our test results to help regulators infer whether the tests are safe and effective, and transparent sharing of our health information to help treat other patients on the premise that we gain reciprocity of advantage when each person’s health care is informed by the best available data about all of us. Transparency undeniably confers many social benefits but creates risks to the civil rights of the people whose genetic information is …