ASHG Issues Statement on Anniversary of Genetic Information Nondiscrimination Act

BETHESDA, Maryland, May 16 -- The American Society of Human Genetics issued the following by President David L. Nelson:

"This month, the American Society of Human Genetics (ASHG) celebrates the 10th anniversary of the Genetic Information Nondiscrimination Act (GINA), a landmark U.S. federal law prohibiting genetic discrimination in the workplace and in health insurance. Its signing into law on May 21, 2008, resulted from more than a decade of support from policymakers, as well as long-term advocacy efforts from ASHG and other organizations representing genetics specialists and patients. In the years since, GINA has been important for encouraging public participation in research and the translation of genomics discoveries to health care advances.

"GINA makes it illegal for employers to make decisions about employment, and for health insurers to make decisions about coverage, based on employees' genetic data. Importantly, employers and insurers cannot ask employees to take a genetic test or to reveal the results of such a test.

"Given the growing role of genetics in research, health, and medicine, GINA and its protections are more relevant today than they have ever been. The law helped propel medical and scientific advances through its protections for research participants who are key to its progress. These protections have been and will continue to be essential in the recruitment of diverse, representative groups to large-scale programs such as the National Institutes of Health's All of Us project, by reassuring participants that their workplaces and health insurers cannot misuse the information that results.

"To fully realize GINA's benefits for science and the public, ASHG recognizes the need to raise awareness about the law and the protections it affords. Studies conducted over the past decade repeatedly show that most Americans are unaware of GINA, and that many people who have heard of the law are unclear about its protections. For example, a 2011 study showed that only 16 percent of Americans are aware of any law protecting the privacy of their genetic information, and that 81 percent of physicians are not familiar with GINA. Similarly, a 2015 survey of U.S. residents found that 79 percent are unfamiliar with GINA.

"To address this gap, ASHG has launched a new video, GINA Protects You and Your Family: Here's How. It aims to help individuals understand the law's protections and what to do if they suspect a violation. We encourage researchers, clinicians, and others in the genetics community to share the video with their patients, colleagues, and collaborators to help build awareness of GINA's important protections."