Happy 10th Birthday, GINA! A Law Advancing Science and Medicine

David L. Nelson, PhD

The revolution in human genetics is advancing at an astonishing pace – new research applications, diagnostics, and effective treatments are changing the way we think about biology, medicine, and health. Last month, we celebrated the 15th anniversary of the Human Genome Project’s (HGP) completion, which has powered so much of this progress.

Today, we commemorate a different watershed achievement in genetics that has had profound public impact: 10 years of genetic nondiscrimination. On May 21, 2008, the United States codified fundamental protections for people participating in research or taking a genetic test in a doctor’s office to ensure it won’t affect their job or health insurance.

The Genetic Information Nondiscrimination Act, or GINA, was signed into law by President George W. Bush after a 13-year campaign by Rep. Louise Slaughter (D-NY), Rep. Judy Biggert (R-IL), Senator Olympia Snowe (R-ME), and Senator Ted Kennedy (D-MA) to establish these federal protections. Senator Kennedy declared it “the first civil rights bill of the new century of the life sciences.”

GINA was designed to advance science and medicine; in fact, it was leaders of the HGP examining societal issues related to genetics research who identified the need for such a law. They realized that people might decline to take a genetic test, or to volunteer for research, out of fear that doing so would lead them to lose their job, health insurance, or privacy. They called for the establishment of protections against genetic discrimination.

But GINA can only be effective in encouraging research participation to the extent that people know about the law. Unfortunately, studies repeatedly show that most Americans are unfamiliar with GINA, and those who have heard of the law are unclear about its protections. So today, to help people understand GINA’s protections and importance for research and medicine, the American Society of Human Genetics (ASHG) is launching a two-minute video, GINA Protects You and Your Family: Here’s How. We encourage the research community to share the video with the public and with health providers, to help ensure continued awareness of GINA and maximize the law’s effectiveness.

The authors of GINA were visionary. Many years before the first human genome was sequenced, they foresaw a future where genome sequencing would be commonplace in both research and clinical labs. That future has arrived. Even though GINA was first introduced in Congress over two decades ago, GINA and larger privacy protection questions remain central to today’s research programs and public dialogue: in recruitment for the NIH’s All of Us program, launched just this month, GINA reassures the program’s public partners that their participation will not lead to them being harmed.

Even as we celebrate ten years of GINA, we also have to recognize that our work is not done. Over the past decade, there have been several policy proposals that would have weakened GINA if they were implemented. The most recent example is the Preserving Employee Wellness Programs Act (H.R.1313), which would fundamentally undermine GINA’s workplace genetic privacy protections. It is important that the research community remains vigilant to ensure that GINA’s protections remain and that the law is robustly implemented. ASHG will continue to monitor and respond to threats to the protections provided by GINA.

More than ever, human genetics research is advancing progress in countless medical specialties and scientific disciplines. ASHG was proud to stand with partners in the research and health care community in advocating for GINA over the many years of its development, and we encourage the entire medical research community to affirm its importance for research and health care. To realize the full potential of human genetics research and its translation to medical advances, we need GINA today more than ever.

David L. Nelson, Ph.D., is president of the American Society of Human Genetics, a member of Research!America. He is a Cullen Foundation Professor of Molecular and Human Genetics at the Baylor College of Medicine, Associate Director of the BCM Intellectual and Developmental Disabilities Research Center, and Director of the BCM Integrative Molecular and Biomedical Sciences Graduate Program.

 

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Without research, there is no hope.
The Honorable Paul G. Rogers