The Genetic Information Nondiscrimination Act at Age 10: GINA's Controversial Assertion that Data Transparency Protects Privacy and Civil Rights
69 Pages Posted: 13 Apr 2018
Date Written: April 1, 2018
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 hapless individuals whose genetic information is shared. Touted as a major civil rights law at the time of its passage, the Genetic Information Nondiscrimination Act of 2008 has endured ten years of criticism that its protections are ineffectual, insufficient, or even unethical and overtly unsafe for the people it aims to protect. At the center of this controversy are provisions of GINA that expand people’s access to genetic information that others store about them—a heavily contested assertion that data transparency implies sharing data not just with third parties, but with the people whose data are being shared. This article traces the decades-long roots of this assertion and explores pathways to resolve the controversy that engulfs it. It is important to resolve this controversy. As GINA enters its second decade, genomics is finally starting to gain sufficient predictive power to support discriminatory and other nefarious uses that GINA was designed to prevent. We are entering a positive feedback loop in which the genomic research that exposes us to risk of unwanted data disclosures simultaneously fuels discoveries that make such disclosures potentially more damaging.
Keywords: Genetic Information Nondiscrimination Act, HIPAA Privacy Rule, genomic data, data privacy, data transparency, civil rights, genetic discrimination
Suggested Citation: Suggested Citation