When the Genetic Information Nondiscrimination Act passed in 2008, supporters hailed it as the “first major civil-rights bill of the century.” GINA was unusually forward-looking; it protected against a form of discrimination that was not yet common. Under the law, employers and health insurance companies could not request genetic test results and discriminate based upon them.
Now a Republican-backed bill in the House that clarifies GINA rules as part of healthcare repeal-and-replace has kicked up a controversy. H.R. 1313 says that parts of GINA do not apply to workplace wellness programs. These programs, originally promoted in the Affordable Care Act, are meant to encourage a healthy lifestyle, and employees who participate may end up with lower premiums. If a company’s wellness program includes genetic tests to identify health risks—as some are starting to do—then employees who refuse the tests may pay hundreds or thousands more per year than their colleagues.
The uproar after STAT News reported on the bill is a reminder that fears about genetic discrimination are still very real. GINA exists for good reason.
Despite the landmark nature of GINA, the law has real limits. The statute covers employers and health insurance companies. It does not cover schools, mortgage lending, or housing. And it excludes other forms of insurance like life insurance, long-term care, and disability insurance. These issues, anticipated in the 1990s, have come up again in recent years, showing that often, genetic tests can have unanticipated consequences.
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When genetic-discrimination legislation was first introduced in the 1990s, genetic tests were still the province of academic science. The Human Genome Project was underway. The project also included a study of legal, social, and ethical issues around genetic tests, and the results were not encouraging.
“They found widespread public fear, and [found] that people might not want to benefit from clinical advances out of fear of genetic discrimination,” said Derek Scholes, director of science policy at the American Society of Human Genetics. So scientists wanted a way to reassure volunteers that donating DNA would not lead to consequences, like your health insurance premiums shooting up if it turns out you have a breast cancer gene.
In 1997, a group of patient and civil rights organizations banded together to form the Coalition for Genetic Fairness to push for a genetic discrimination law. Over the next decade, several bills were introduced only to languish in Congress. One issue of contention was how broad GINA’s protections should be. Early bills also prohibited discrimination in coverage for life insurance, long-term care, and disability.
“The political calculation was made that health insurance and employment were where the arguments were strongest and the support was strongest,” says Jeremy Gruber, former president of the Council for Responsible Genetics, who advocated for GINA. Not everybody buys life insurance, the thinking went, but a job and health insurance are more universal. That version of GINA ultimately passed, and President Bush signed it into law in 2008.
Today, life-insurance companies can legally deny applications from people based on their genetic tests. In Fast Company last year, Christina Farr wrote about a 36-year-old woman whose life insurance application was denied because her medical records noted she had tested positive for the BRCA1 breast cancer gene. The life insurance market works differently from health insurance, and there are business arguments for treating them differently. On the other hand, applicants who know they have a cancer gene can take steps to mitigate their risk.
Another area GINA does not cover is education. In 2012, a school district in Palo Alto, California, pulled a boy out of class because he had tested positive for a gene for cystic fibrosis. (His school had two other kids with cystic fibrosis; patients with the disorder have to be kept apart to prevent the spread of contagious infections.) The boy didn’t actually have cystic fibrosis, according his parents, who sued the school district last year under the Americans With Disabilities Act. Despite a genetic test being at the heart of the case, GINA didn’t apply because it didn’t involve employers or health insurance. At a time, a lawyer noted, “This case is an useful reminder about the limitations of the federal statute.”
Some states have passed broader protections against genetic discrimination. California, for example, has CalGINA, which also prohibits discrimination in medical care, housing, mortgage-lending, and participation in state-funded programs. But there hasn’t been much political momentum lately to expand GINA protection nationally—even as the genetic testing market has grown by leaps and bounds and the National Institutes of Health looks to enroll a million people in its Precision Medicine Initiative.
In a statement, a spokesperson with the House Committee on Education and the Workforce attributed the opposition to the recent House bill to partisanship: “Those who are opposed to the bill are spreading false information in a desperate attempt to deny employees the choice to participate in a voluntary program that can reduce health insurance costs and encourage healthy lifestyle choices. We believe working families should be empowered with that choice, and so did the Obama administration. It is another sad reminder of just how extreme the Democrat party and their liberal allies are becoming.”
In 2008, GINA passed the Senate 95-0, and the House 414-1.