GINA’s 10th Anniversary and the Future of Genetic Privacy

Written by Nascent Transcript writer Allison McCague

August 2018

May 21 of this year marked the tenth anniversary of the Genetic Information Nondiscrimination Act (GINA), a landmark piece of legislation that Senator Ted Kennedy—one of the sponsors of the bill—called “the first civil rights bill of the new century of the life sciences.” GINA’s passage was the culmination of a thirteen-year effort on the part of scientists, patient advocacy groups, and policymakers, responding to concerns about genetic discrimination during the early days of the Human Genome Project. The bill was initially introduced in 1995 and finally passed in 2008 by a near unanimous vote—95-0 in the Senate and 414-1 in the House. GINA was a landmark in the civil rights movement in the United States because, unlike other civil rights laws, it represented a preemptive effort to protect individuals against discrimination, rather than a reactive measure.

GINA is seminal for the protections it provides Americans against discrimination based on their genetic data. The law makes it illegal for insurance providers to deny a person health insurance or adjust premiums based on genetic test results or family history. Its protections, however, do not apply to life, long-term care, or disability insurance. Under GINA, it is against the law for an employer to make hiring, firing, promotion, or salary decisions based on a person’s genetic data. It is also illegal for an employer to request an employee’s genetic data or require access to their data.

To mark the 10th anniversary of GINA’s passage, ASHG made an informational video explaining how the law protects individuals. With increasing demand for genetic testing, these protections are more important than ever.

For the scientific community, GINA’s protections are essential for fostering public participation in genetics research. It applies to “participation in clinical research which includes genetic services, by such individual or family member” (GINA – Public Law 110-233). Before GINA, fear of genetic discrimination was cited as a reason some people declined to participate in genetic research. Removing that barrier to participating is key to increasing public participation and confidence in research and building the databases that have been so integral to the quest for precision medicine.

Much has changed in the world of genetics since GINA was first enacted a decade ago. The number of genetic tests is on the rise, the types of information people receive from genetic tests are becoming increasingly diverse, and the amount of publicly available genetic data is skyrocketing. Studies show that there are still widespread concerns about genetic discrimination amongst members of the public and that these concerns influence individuals’ life choices and decision whether to pursue genetic testing.

Thus, it is essential that genetics professionals take the lead in educating the public about GINA. It is also vital that members of the genetics community rise to protect GINA when it is threatened. One such threat came last year when H.R. 1313, the Preserving Employee Wellness Programs Act, was introduced to the House of Representatives. H.R. 1313 would have undermined the protections provided by GINA by allowing employers to compel their employees to share health information and family history, including genetic information, under the guise of employee wellness programs. The bill would also permit employers to impose a penalty on those who chose not to share their information. Not only could employers collect information about employees from genetic testing done as part of the wellness program, but also from direct-to-consumer genetic tests and from testing done as part of a research study.

If the fundamental protections provided by GINA are gutted, not only will many Americans’ genetic information be at risk, opening the door to discrimination, but also large-scale research initiatives, like the All of Us Research Program, would not be possible. ASHG released a statement opposing H.R. 1313 and remains committed to strengthening genetic privacy protections, such as the provisions in the 21st Century Cures Act. In this era of precision medicine with increased accessibility to genetic testing, strong genetic privacy laws—and educational efforts about them—are of vital importance to break down barriers that prevent individuals from pursuing information about their own health and participating in research.

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