By John Novembre, Mason Kortz, Kaitlyn Dowling
In a new, year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large.
What if the hidden code underwriting your humanity could be used to prevent you from getting approved for a mortgage? Or siphoned you into a different classroom from your peers? What if the specter of an illness — possibly years away from manifesting — kept you from getting a job? The Genetic Information Non-Discrimination Act is a law passed in 2008 aimed at protecting Americans from discrimination based on information gleaned from genetic testing. With increasing access to genetic counseling in a traditional clinical setting, as well as the growth in popularity of direct-to-consumer genetic testing (like 23andMe), GINA is more relevant now than ever.
Much of the existing legal scholarship on genetic non-discrimination focuses on insurance companies’ and employers’ access to genetic information and what they could, potentially, do with it. While these areas are obvious places to start when thinking about the ways a person’s genetic information could be used in harmful ways against them, they represent only the tip of the iceberg. Beyond insurance and employment, genetic non-discrimination relates to many other important – but less discussed – subtopics. Genetic information could also be used in adverse ways in decision making about housing, lending, and education.
For example: Banks and landlords perform credit checks to screen out individuals who are likely to default on a mortgage or fall behind on rent payments. What if genetic testing revealed an individual susceptible to an aggressive form of cancer? Knowing that American cancer patients are 2.5 times more likely than the average person to file for bankruptcy, what might a bank or landlord do with that information? What if that illness might not appear for many more years, if at all? Is the average person thinking about these questions when she spits into a tube to find out if great-grandma really was one-quarter Swedish?
What is GINA?
Congress passed the Genetic Information Non-Discrimination Act (GINA) in 2008 after battling 13 years of procedural roadblocks. GINA created a federal framework to protect individuals from discrimination on the basis of genetic information, which became increasingly accessible at the turn of the 20th century with the culmination of the Human Genome Project and advances in genetic science and technology.
The bill’s House sponsor, Rep. Louise Slaughter (D-NY), first introduced genetic non-discrimination legislation in the House of Representatives in 1995. Slaughter, a microbiologist, explains that although the Human Genome Project had not yet fully sequenced the human genome at that time, surveys showed that the overwhelming majority of Americans worried that their genetic test results could be used against them to their disadvantage. Slaughter was also concerned that this fear would result in people “[shying] away from participation in research studies – the very research that could benefit human health.”
Why is GINA necessary?
Despite Americans’ concerns and overwhelming public support for some sort of genetic non-discrimination legislation, many members of Congress saw GINA as premature. Americans were anxious, but was it really a problem? Representatives balked at including restrictions on employers, believing that employee protections against genetic discrimination existed under the Americans with Disabilities Act (ADA). Under the ADA, an individual must demonstrate that they qualify as disabled by showing that they have:
- “a physical or mental impairment that substantially limits one or more major life activities of the individual;”
- “a record of such an impairment;” or
- “is regarded as having such an impairment.”
Some legislators argued that the third prong of the law – “regarded as having such an impairment” — would cover those whose genetics indicate that they may at some point have an impairment. Yet GINA’s proponents feared that the Supreme Court’s increasingly narrow interpretation of the ADA would not cover genetic information. In Sutton v. United Air Lines, the Supreme Court held that to demonstrate that they were “regarded as” having a disability, an individual would have to show either: “(1) a mistaken belief that a person has a limiting impairment, or (2) a mistaken belief that a nonlimiting impairment substantially limits major life activities.” Neither of these circumstances appear to cover genetic discrimination. Though the ADA was later amended by Congress to reject the Supreme Court’s narrow interpretation in Sutton, it remains unclear whether this broader scope prohibits genetic information discrimination for asymptomatic individuals.
What does GINA do?
Broadly, GINA prohibits health insurers and employers from making decisions based on genetic information. In particular, insurers are not allowed to require, request, or purchase genetic information to use in eligibility, coverage, underwriting, or premium decisions. Employers are similarly prohibited from using genetic information in firing, hiring, promotion, or pay decisions and they must not utilize genetic tests as a condition of employment unless certain exceptional circumstances apply.
GINA takes a “belt and suspenders” approach by prohibiting not only discrimination on the basis of genetic information, but by also prohibiting insurers and employers from acquiring genetic information through requiring, requesting, or purchasing genetic tests and genetic information. In short, GINA contains both privacy and anti-discrimination protections.
The Harvard Law Cyberlaw Clinic at the Berkman Klein Center for Internet & Society has been working with human geneticist John Novembre to create a guide to genetic non-discrimination laws and provide a framework to inform the creation of further legislation in this important area. We’d like to thank Clinic students Tara McCortney and Alice Tranter Wilson and clinical instructor Mason Kortz for their work on this guide. We’ve looked at the history of legislative efforts to learn more about why such laws are necessary, what challenges and roadblocks legislators could face in enacting new laws, and the shortcomings and questions left open by existing federal and state laws. In short, genetic non-discrimination is something of a brave new world that legislators in many states want to address before thorny problems arise, but the legal landscape is murky.