“Your friend GINA: The little-known law that protects you from genetic discrimination”
A new survey shows many Americans fear their
genetic information could be used to set insurance coverage rates or influence employment decisions. It turns out there’s a law to protect them, and it was passed so early in the history of genetics research, most people haven’t heard of it.
My family has a history of heart disease, and in some members this has manifested in conditions that require regular monitoring and medication. It’s made me sensitive to the topic of “pre-existing” conditions in healthcare, and grateful for the protections provided by the Affordable Care Act. But, considering that heart disease is linked to numerous genes that can compound risk and be inherited across generations, it raises the question: If I don’t show symptoms of a specific disease, but I do carry lots of these risk-conferring genes, could I face discrimination from insurers or employers?
It’s a concern that is on the minds of many Americans. According to a 2019 survey by the American Society for Human Genetics, confidentiality and privacy were the top concerns Americans had about participating in genetics research [1]. Respondents strongly opposed the use of genetic information to set insurance coverage rates and opposed the disclosure of genetic information to corporate wellness programs. As genetic data are more commonly collected, there is a real fear that insurers and employers could use the data to discriminate against individuals.
What’s surprising is that strong legal protections do exist. Congress passed the Genetic Information Nondiscrimination Act (GINA), nearly unanimously, in 2008 to prevent discrimination in insurance and employment [2]. The law is broad in its coverage, barring genetic discrimination by all forms of health insurance providers, including employer-sponsored group health plans and individual health coverage. Importantly, GINA even prohibits insurer access to genetic information, eliminating any possibility it could be used in setting rates or for enrollment purposes. Similar prohibitions apply to employers, making it illegal to make employment decisions – such as hiring or firing – based on genetic information, or for employers to ever acquire genetic information regarding an employee. And the definition of genetic information under GINA is broad, including an individual’s DNA test results, the genetic test results of family members, and family disease history.
So why have so few people heard of GINA? The answer is partly because GINA was passed so early in the history of genetic data. When the bill was first being drafted by Congresswoman Louse Slaughter (D-NY) and Senator Olympia Snowe (R-ME) in 1995, the human genome hadn’t even been sequenced. By the time the bill was passed, 13 years later, the cost for sequencing a single human genome was still incredibly high, almost $1 million. It would be another decade before developments in DNA sequencing technologies dramatically reduced the costs of collecting genetic information. You can now sequence an individual’s full genome for $1,000, or genotype a million different genetic sites for only $100. The drop in cost has made genetic testing possible at a large scale for employers, researchers, and healthcare providers, leading to the rapid accumulation of individuals’ genetic data. In part, GINA’s lack of fame is a result of its incredible foresight, addressing a future problem that wouldn’t materialize until a decade after the law was enacted.
GINA’s notoriety might also be hindered by a peculiarity in its effect, which could limit how often it actually gets invoked in lawsuits. GINA protects against discrimination based on genetic information, however it provides no protection once a genetic disease manifests. For instance, an employer can’t fire me because a test shows I have lots of genetic mutations that put me at risk for heart disease. However, if that risk ever manifested into a serious heart condition, I would no longer be protected under GINA. Instead, I’d have to seek protection under the Affordable Care Act or the Americans with Disabilities Act. Additionally, GINA does not protect against discrimination in areas such as disability, long-term care, or life insurance [3].
In today’s political climate it’s hard to imagine a law like GINA, which demonstrated incredible foresight and bipartisan support. And while the definition of ‘genetic information’ has come under debate [2] – does it pertain to only DNA data, or does it also include family medical history – the protections against discrimination by health-insurers and employers are robust. Since the cost of genetic testing has dramatically dropped and the collection of genetic data has become more common, it will be noteworthy to see how frequently GINA’s protections are invoked.
[1] Zogby Analytics. (2020). U.S. Public Views of Genetics: An ASHG Survey, December 2019. https://www.ashg.org/discover-genetics/public-views-of-genetics-survey/
[2] Sutter, SM. “GINA at 10 years: the battle over ‘genetic information’ continues in court.” Journal of Law and Biosciences. 2019.
[3] Clayton, EW, Evans BJ, Hazel, JW, Rothstein MA. “The law of genetic privacy: applications, implications, and limitations.” Journal of Law and Biosciences. 2019.