The Genetic Information Nondiscrimination Act Allows for Too Much Discrimination

The Genetic Information Nondiscrimination Act Allows for Too Much Discrimination

by | Mar 23, 2021 | Genetics and Society

In recent years direct-to-consumer (DTC) genetic tests have become so accessible, becoming something of a cultural phenomenon. As of 2021 there are more than 77,000 different types of genetic tests being performed around the world for more than 10,000 different conditions with more than 300 labs performing these tests in the U.S alone [1]. By 2019, 26 million Americans had taken part in DTC genetic testing, through companies such as FamilyTree DNA, Ancestry.com, and 23andMe [2].

Today, using these tests, I could find out that I carry a mutation in the BRCA1 gene. The presence of this mutation means that I would have more than a five-fold increase in my lifetime risk for breast cancer and more than a thirty-six fold increase in my lifetime risk for ovarian cancer [3]. The good news is that equipped with the knowledge of this mutation, I could take life-saving preventive measures to mitigate that cancer risk [4]. The bad news is that in some states a variety of companies can now use this genetic information to legally discriminate against me if I were to apply for some type of economic benefit, such as a mortgage or life insurance. These companies can request my genetic test result and use the result to deny my application altogether, to justify setting different terms of agreement, or deny my application if I refuse to give them the information.

The only federal law that prohibits discrimination on the basis of one’s genetics prior to the manifestation of a disease or disorder is the 2008 Genetic Information Nondiscrimination Act (GINA) [5]. One of the intentions of GINA is to allow Americans to take advantage of personalized medicine, like testing for the BRCA1 genetic mutation, without fear of discrimination [6]. GINA defines “genetic information” as an individual’s genetic tests, the genetic tests of family members, and the manifestation of disease in family members [5]. GINA provides significant protections against genetic discrimination in employment and health insurance settings. Title I of GINA prohibits health insurers from using genetic information to determine an individual’s eligibility or coverage, underwriting, or premium-setting decisions [5]. Title I also prohibits health insurers from requesting or requiring individuals or their family members to undergo genetic testing or provide genetic information [5]. These protections extend to private insurers, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health Administration [7-8]. Title II of GINA prohibits employers from using genetic information in employment decisions and requiring or requesting genetic information from applicants or employees [5].

While the protections GINA provides are important, they don’t go far enough. It is unlikely that at the time of GINA’s passage in 2008 the government anticipated the DTC genetic testing boom. GINA does not provide protections in a wide variety of important scenarios. For instance, GINA does not ban genetic discrimination in any other realms outside of employment and health insurance. This leaves out different types of insurance coverage, including long term care, disability, and life insurance [9-10], as well as applications for housing, education, or mortgage lending [10]. It is legal in some states for a mortgage lender to request genetic information from an applicant to estimate if they will be healthy long enough to pay off their loan. The mortgage lender can then use this information to decide if they are going to deny a loan application altogether, set higher interest rates, or set shorter loan terms for those with genetic information that suggests they are genetically predisposed to being unhealthy. These companies have the right to deny your application based on your test results or if you don’t provide them with the genetic information they want.

Furthermore, GINA only protects those who have not yet manifested a disease, even though the distinction between an asymptomatic individual and an individual that has manifested a disease is frequently ambiguous [11]. Those who have already manifested a genetic condition must rely on other laws, like the Americans with Disabilities Act (ADA), for legal protection [7]. GINA also does not apply to everyone. GINA does not apply to employers with fewer than 15 employees and only applies to the military in part [5]. GINA protects military members from discrimination in the military’s TRICARE health insurance program. However, one must be a member of the military to enroll in TRICARE and the GINA does not prohibit the military from using genetic information to make employment decisions [8]. However, military policies are in place that mirror GINA in many ways [9]. Interestingly, the Department of Defense (DoD) has officially advised all military members to refrain from direct-to-consumer genetic testing [12], which is counterintuitive to one of the previously mentioned underlying purposes of GINA, to encourage people to take advantage of genetic testing without fear of discrimination [6].

Some states have recognized these shortcomings and have enacted state level legislation to provide additional protections within their borders, but the protections they offer vary widely in scope from state to state [8]. In 2011, California enacted Cal-GINA, one of the most inclusive genetic nondiscrimination state statutes [8,13]. Cal-GINA expanded protections against genetic discrimination in housing, employment, education, public accommodations, health insurance coverage, life insurance coverage, mortgage lending, elections and to employers with 5 or more employees [13]. Cal-GINA amended the Unruh Civil Rights Act to make genetic information a protected class [14] outlawing genetic discrimination in “all business establishments of every kind whatsoever” [15]. Cal-GINA also allows for individuals to seek unlimited damages, which the federal GINA caps at $50,000-$300,000 dependent upon the size of the defendant [16]. In contrast, Maryland passed one of the least inclusive genetic nondiscrimination state statutes in 2008. Maryland House Bill 29 stated that if a long-term care insurance company can provide evidence that the genetic test result would be useful to them financially, they can request and use it to determine insurance eligibility and premiums [17]. Moreover, this bill did not provide protections for either life or disability insurance.

According to a 2012 analysis, 13 states had restricted the use of genetic information in life insurance, 14 states had restricted it’s use in disability insurance, and 11 states had restricted it’s use in long-term care insurance [18]. Only a handful of states had laws that regulated all three types of insurance [18]. Ultimately, this patchwork of legislation is confusing and contributes to American’s fears and concerns surrounding genetic testing and discrimination. The interstate variability in genetic nondiscrimination laws makes it difficult for consumers of genetic testing to navigate and are insufficient to deal with the widespread use of genetic testing, including both clinical and DTC genetic testing, across all 50 states.

GINA needs to be expanded at the federal level to provide consistent nationwide protections to Americans. With so many ways in which genetic information can be misused, federal genetic nondiscrimination legislation must be broad [14]. Therefore, GINA should be expanded at the federal level to mimic Cal-GINA by extending genetic discrimination protections to housing, employment, education, public accommodations, health insurance coverage, life insurance coverage, mortgage lending, elections, employers with 5 or more employees [12] and in “all business establishments of every kind whatsoever” [15]. This would truly provide comprehensive protection from genetic discrimination to all Americans.

The longer GINA remains unchanged more Americans will face genetic discrimination. This may contribute to Americans forgoing genetic testing, both DTC and medically recommended, out of fear that they will later face genetic discrimination as a result. Additionally, Americans may forgo participating in genetics research for the same fearful reasons, ironically leading to stagnation in this field of science, and ultimately slowing progress towards the cures and treatments of the genetic diseases we are discriminating against.

My ask is simple: do some more research yourself and start informing your friends, family, and colleagues about this issue. Then, request that your representatives get familiar with this issue so they can advocate for the expansion of GINA at the federal level to mimic Cal-GINA to widely prohibit genetic discrimination throughout the U.S. Here are some resources to help you get started.

References

[1] Rubinstein, W. S., Maglott, D. R., Lee, J. M., Kattman, B. L., Malheiro, A. J., Ovetsky, M., … Ostell, J. M. (2012). The NIH genetic testing registry: a new, centralized database of genetic tests to enable access to comprehensive information and improve transparency. Nucleic Acids Research, 41(D1), D925–D935. https://doi.org/10.1093/nar/gks1173

[2] Regalado, A. (2020, June 19). More than 26 million people have taken an at-home ancestry test. Retrieved December 13, 2020, from https://www.technologyreview.com/2019/02/11/103446/more-than-26-million-people-have-taken-an-at-home-ancestry-test/

[3] Kuchenbaecker, K. B., Hopper, J. L., Barnes, D. R., Phillips, K.-A., Mooij, T. M., Roos-Blom, M.-J., … Olsson, H. (2017). Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers. JAMA, 317(23), 2402. https://doi.org/10.1001/jama.2017.7112

[4] Kotsopoulos, J. (2018). BRCA Mutations and Breast Cancer Prevention. Cancers, 10(12), 524. https://doi.org/10.3390/cancers10120524

[5] Genetic Information Nondiscrimination Act of 2008. (n.d.). Retrieved November 21, 2020, from https://www.congress.gov/bill/110th-congress/house-bill/493/text

[6] Suter, S. M. (2018). GINA at 10 years: the battle over ‘genetic information’ continues in court. Journal of Law and the Biosciences, 5(3), 495–526. https://doi.org/10.1093/jlb/lsz002

[7] Congressional Research Service. (2015, August). The Genetic Information Nondiscrimination Act of 2008 (GINA)(RL34584). Retrieved from https://crsreports.congress.gov/product/pdf/RL/RL34584

[8] National Human Genome Research Institute. (2020a, August 3). Genome Statute and Legislation Database. Retrieved November 20, 2020, from https://www.genome.gov/about-genomics/policy-issues/Genome-Statute-Legislation-Database

[9] Baruch, S., & Hudson, K. (2008). Civilian and Military Genetics: Nondiscrimination Policy in a Post-GINA World. The American Journal of Human Genetics, 83(4), 435–444. https://doi.org/10.1016/j.ajhg.2008.09.003

[10] Zhang, S. (2017, March 13). The Loopholes in GINA, the Law Prohibiting Genetic Discrimination. The Atlantic. Retrieved from https://www.theatlantic.com

[11] Areheart, B. A., & Roberts, J. L. (2019). GINA, Big Data, and the Future of Employee Privacy. Yale Law Journal, 128(3), 710–790. Retrieved from https://advance-lexis-com.offcampus.lib.washington.edu/api/document?collection=analytical-materials&id=urn:contentItem:5VCK-7150-02BN-10RB-00000-00&context=1516831.

[12] Department of Defense. (2019, December). Direct-to-Consumer Genetic Testing Advisory for Military Members. Retrieved from https://www.scribd.com/document/440727436/DOD-memo-on-DNA-testing#from_embed

[13] Senate Bill No. 559, Chapter 261. (2011, September 6). Retrieved November 21, 2020 from https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201120120SB559

[14] Prince, A. E. R. (2013). Comprehensive Protection of Genetic Information : One Size Privacy or Property Models May Not Fit All. Brooklyn Law Review, 79, 175. Retrieved from https://advance-lexis-com.offcampus.lib.washington.edu/api/document?collection=analytical-materials&id=urn:contentItem:5BSP-GBB0-00CV-M0N8-00000-00&context=1516831.

[15] Unruh Civil Rights Act. (1959). Retrieved from https://leginfo.legislature.ca.gov/faces/codes_displaySection.xhtml?lawCode=CIV§ionNum=51

[16] Rothstein, M. A., & Rothstein, L. (2017). FEATURE, THE USE OF GENETIC INFORMATION IN REAL PROPERTY TRANSACTIONS, 31 Probate & Property 13. Retrieved January 10, 2021, from https://advance-lexis-com.offcampus.lib.washington.edu/document?crid=39b943d7-95ff-4fd4-9b62-f69306140616&pddocfullpath=%2Fshared%2Fdocument%2Fanalytical-materials%2Furn%3AcontentItem%3A5P09-Y730-00DB-537M-00000-00&pdsourcegroupingtype=&pdcontentcomponentid=155878&pdmfid=1516831&pdisurlapi=true#

[17] House Bill 29. (2008, May 22). Retrieved November 23, 2020, from http://mgaleg.maryland.gov/mgawebsite/search/legislation?target=/2008rs/billfile/hb0029.htm

[18] Beyond GINA, States Build Patchwork of Protections. (2012, August 22). Retrieved November 23, 2020, from https://www.genomeweb.com/archive/beyond-gina-states-build-patchwork-protections#.X7w0vy9h0_V

[19] National Human Genome Research Institute. (2020b, September 16). Genetic Discrimination. Retrieved November 22, 2020, from https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination