DNA in Democracy

Dina Rosin (CMC ’20)

On May 28, 2007, the Genetic Information Nondiscrimination Act (GINA) was passed as an Act of Congress to prohibit the use of genetic information in cases of healthcare and employment. This means that healthcare providers cannot withhold insurance on the basis of genetic predispositions to certain diseases or conditions. Furthermore, this act states that employers are not permitted to discriminate when hiring employees on the basis of their genetic profile. GINA shows the significance of coding anti-discrimination into federal law, even when the discriminatory acts are seemingly uncontroversial.

In the early 20th century, technology was developed that allowed the scientific community new understanding of human genetics. This enabled earlier detection of illnesses, which, in turn, led to the development of new and more effective therapies. This medical advancement had obvious benefits for society. However, increased access to new genetic information also opened the door to new attempts at discrimination. For example, some employers used this genetic information on Sickle Cell Anemia when making hiring decisions, which had a disproportionately negative effect on the African-American community. Throughout the 20th century, states implemented laws which “provided for the sterilization of persons having presumed genetic “defects” such as mental retardation, mental disease, epilepsy, blindness, and hearing loss, among other conditions.” These laws were clearly discriminatory in nature and faced a backlash. While most of these laws have since been repealed, Congress hoped to create a more uniform federal standard for genetic non-discrimination law, as the scope and approach of such laws varied greatly between states.

GINA was passed to eliminate genetic discrimination in the workplace, and the racial implications that genetic discrimination can have. As the example above demonstrates, “many genetic conditions and disorders are associated with a particular racial and ethnic group of gender,” according to the finding of Congress. Congress states that a particular group may become stigmatized or discriminated against in response to this genetic information. Without federal law classifying genetic-based discrimination as illegal, people had no standing to legally challenge the discrimination they faced. By creating this federal standard, Congress gave citizens a weapon to fight genetic discrimination.

Generally, GINA has been viewed positively, especially by both Republicans and Democrats in the federal government, and was passed in the House of Representatives by a nearly unanimous vote of 420-3. The National Human Genome Research Institute (NHGRI) at the National Institute of Health argues that GINA is necessary for personalized medicine. They state that “legislation that gives comprehensive protection against all forms of genetic discrimination is necessary to ensure that biomedical research continues to advance.” Further, the NHGRI believe that this legislation is important to alleviate the discomfort that patients might have with genetic testing. The Coalition for Genetic Fairness (CGF) is also in support of GINA. According to the CGF, genetic discrimination could bar many people’s access to health insurance, since all humans have genetic anomalies. If it was legal to genetically discriminate, people could arbitrarily be denied health insurance or other resources based on these anomalies.

Members of the Genetic Information Nondiscrimination in Employment Coalition had expressed strong disapproval of the bill at the time. This coalition consists of “employers, national trade associations, and professional organizations.” Their opposition does not lie with whether or not genetic discrimination can happen in the workplace. Rather, the coalition disagreed with the approach GINA took to combat workplace discrimination, arguing that it placed too much responsibility on the employer. Ultimately, though they pressured Congress not to pass this bill, the recognition that genetic discrimination deserved federal protection was sufficient enough to ensure its passage.

Today, GINA is generally not seen as controversial. However, there are still calls to increase the strength of GINA and the extent to which it prevents discrimination. For example, GINA does not cover life, disability, or long-term care insurance. Despite the limits of GINA’s reach, it is still an important piece of legislation that has prevented discriminatory practices for many. GINA is an example of the important role that federal law plays in combating discrimination. Though it passed more easily than most anti-discriminatory statutes, it remains an important lesson in Congress’ obligation to ensure equal protection of the law for all citizens when they can.

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