Genetic discrimination

Genetic discrimination occurs when people are treated differently because they possess a gene mutation that causes a disorder or increases their risk of inheriting the disorder. Employers and insurance companies are most often guilty of genetic discrimination. The fear of genetic discrimination holds many people back from participating in genetic research or undergoing genetic testing. Many people worry that their genetics will be used against them to deny them healthcare coverage or job opportunities. Since genetics research plays a crucial role in developing new tests, treatments, and cures for diseases, it became necessary to ensure a person’s genetics could not be discriminated against by employers and health insurers. In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA). Although the bill was hailed as a landmark action for civil rights, some still worried about the law's limited scope.

Background

Fears about genetic discrimination first emerged in the early 1990s. At this time, a project known as the Human Genome Project was underway. The project’s goal was to determine the full genetic sequence of human DNA while also identifying and plotting every gene within the human genome. A genome refers to all the genetic information an organism inherits from its parents, including its full set of chromosomes. The project was designed to help scientists understand the human genome’s physical and functional operations. The resulting research would allow people to examine how their genetic makeup predisposes them to a number of physiological responses.

By mapping out the full genome, researchers would be able to understand the links between genetics and disease more precisely than ever before. For example, successful sequencing would allow researchers to identify links between gene mutations and different types of cancer. These findings could then help develop genetic tests designed to gauge a person’s risk of inheriting the cancer.

The Human Genome Project also conducted research about the legal, social, and ethical issues surrounding genetic tests. Early research was discouraging. In their search for volunteers to donate DNA, researchers found that many worried that genetic tests could lead to discrimination. For example, some women worried that if their genetic test showed they possess the breast cancer gene, insurance companies could deny them coverage or raise their insurance premiums. Such fears dissuaded volunteers from helping to benefit clinical advances.

Despite these concerns, the Human Genome Project successfully mapped almost the entire human genome and sequenced the majority of DNA found in human cells. The project has discovered genetic links to several physiological responses in the body. This data was made available to the public, allowing anyone to analyze and interpret the findings. The scientific community believed genome sequencing data could lead to phenomenal advances in the diagnosis and treatment of several diseases and disorders, such as cancer and Alzheimer’s disease.

Overview

Despite the potential benefits of genetic research, some wondered if these advances came at a cost. Some argued that genetic testing could lead to discriminatory practices by health insurers, employers, and other sectors of society. If a person’s DNA increases their chances of getting a disease, could an insurer raise costs or deny coverage? Could an employer discriminate against a person with a known genetic risk for a disease?

As early as the mid-1990s, activist groups banded together to ensure a person’s genetics could not be used in a discriminatory way. In 1997, a group of patient and civil rights organizations formed the Coalition for Genetic Fairness. The group demanded laws that banned discrimination based on genetics. Several bills were introduced over the next decade, but none were passed by Congress. Politicians argued over how broadly to extend protections. Most agreed that genetic discrimination should be prohibited by health insurance companies and employers. Early drafts of GINA also included protections against discrimination in life insurance, long-term care, and disability coverage. Eventually, lawmakers agreed to extend protections to health insurance and employment. GINA was passed by Congress in 2008 and signed into law by President George W. Bush.

Although the passage of GINA was a milestone for civil rights advocates, some still debated the law's limited scope. The statute does not cover schools, mortgage lending, or housing, and excludes life insurance, long-term care, and disability insurance. In 2012, a school district in Palo Alto, California, removed a boy from class after discovering he had tested positive for a gene that put him at risk of developing cystic fibrosis. Patients with cystic fibrosis must be kept apart to prevent the spread of infection, but the boy who was pulled from class did not have cystic fibrosis, only the gene for the disease. When the boy's parents tried to sue the school, they could not apply GINA to the case because it only covers employment and health insurance.

Some states have enacted their own broader anti-genetic discrimination laws. California also prohibits genetic discrimination in housing, medical care, mortgage lending, and state-funded program participation. North Carolina was the first state to legally protect individuals with the sickle cell trait from discrimination. Less than half of US states have laws providing additional genetic discrimination protections, however. Despite the gaps in protections at a national level, little advocacy has been aimed at remedying the situation since GINA’s passage.

The growth in the genetic testing market in the 2010s and 2020s remains a cause for concern for many civil rights advocates. As a curious public increasingly donates biological samples for genetic testing, many wonder at the potential uses of this stored genetic material. Some organizations keep biological samples for further genetic research, storing them in biobanks. Some members of the scientific community worry about the ethical and social ramifications of such a collection, especially if lawmakers seek to undermine GINA as it applies to the Patient Protection and Affordable Care Act (ACA).

Further, as scientific knowledge develops and technology becomes more advanced, GINA loopholes are probable. With knowledge of which individuals are predisposed to conditions that are costly for insurance companies, the likelihood of discriminatory use increases. The life insurance company GWG Life announced their use of epigenetic technology to assess the life expectancy of policyholders using saliva samples in 2023. Critics argued that the technology still lacked the accuracy needed to be applied in such a context, and other critics argued it set a precedent for using epigenetic markers for insurance purposes. With companies like 23andMe, the availability of this data continues to increase, which calls for an update to the GINA with more precise language. In the mid-2020s, more than 5,000 health conditions had been linked to specific genetic variations, which all hold potential for discriminatory practices.

In 2017, a Republican-backed bill was introduced to the US House of Representatives that sought to eliminate GINA’s application to workplace wellness programs. These programs were introduced in the ACA as an incentive program to encourage healthy lifestyles, and individuals who participated could see their premiums lowered. Some companies include genetic testing in these programs to identify health risks. If genetic discrimination protections were removed from these programs, employees who refused the test could be denied the opportunity to decrease their premiums.

Bibliography

“Genetic Discrimination.” American Medical Association, www.ama-assn.org/delivering-care/precision-medicine/genetic-discrimination. Accessed 5 Jan. 2025.

“Genetic Discrimination.” National Human Genome Research Institute, www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination. Accessed 5 Jan. 2025.

“Genetic Information Discrimination.” US Equal Employment Opportunity Commission, www.eeoc.gov/genetic-information-discrimination. Accessed 5 Jan. 2025.

"The Genetic Information Nondiscrimination Act of 2008 (GINA)." Congressional Research Service, 6 Aug. 2015, crsreports.congress.gov/product/pdf/RL/RL34584/15. Accessed 5 Jan. 2025.

“The Genetic Information Nondiscrimination Act of 2008.” US Equal Employment Opportunity Commission, www.eeoc.gov/statutes/genetic-information-nondiscrimination-act-2008. Accessed 5 Jan. 2025.

Grant, Crystal. "It’s Time for Congress to Update Our Genetic Nondiscrimination Law." American Civil Liberties Union, 24 May 2023, www.aclu.org/news/privacy-technology/its-time-for-congress-to-update-our-genetic-nondiscrimination-law. Accessed 5 Jan. 2025.

“What Is Genetic Discrimination?” Medline Plus, National Library of Medicine, 28 July 2021, medlineplus.gov/genetics/understanding/testing/discrimination. Accessed 5 Jan. 2025.

Zhang, Sarah. “The Loopholes in the Law Prohibiting Genetic Discrimination” Atlantic, 13 Mar. 2017, www.theatlantic.com/health/archive/2017/03/genetic-discrimination-law-gina/519216. Accessed 5 Jan. 2025.