Genetic testing companies, such as 23andMe, have become a craze in the United States within the last 10 to 15 years. 23andMe was formed with the purpose of informing its customers of their genetic health risks, carrier status, and ancestry information. After collecting DNA from saliva, the DNA is sent off to research labs that perform qualitative genotyping–the process of discovering variants in DNA. The genetic tests that 23andMe runs analyze the donor’s DNA, RNA, chromosomes, proteins, and metabolites to determine mutations and changes in chromosome structure. This genotyping allows the labs to discover the customer’s genetic information and background.
Many citizens remain wary of using such resources due to a fear that employers and health insurance companies will use the genetic information for discriminatory purposes. In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to combat this potential discrimination and protect those employees or insured persons. GINA makes it “unlawful for an employer to request, require, or purchase” an employee’s, or their family members’, genetic information. Top of Form Ortiz v. City of San Antonio Fire Dep’t, 806 F.3d 822, 826 (5th Cir. 2015). Under GINA, “genetic information” is an individual’s genetic information, and information about “the manifestation of a disease or disorder in family members of such individual.” Congressional findings suggest that GINA was created to combat potential discrimination based on genetic information by insurance companies and employers. Numerous states have created laws to further protect against discrimination, but these laws vary across each state. And until GINA, federal laws enacted to protect against workplace and insurance discrimination lacked adequate scope and depth to account for discrimination based on genetic testing.
Because of GINA and state laws, people should be less hesitant to engage in the services that these genetic testing companies offer. In addition to notifying customers of their carrier status, health risks, and ancestry information, utilizing 23andMe could be beneficial for insurance purposes. While insurance companies and employers are forbidden from discrimination, they may use the information to reduce premiums or modify copayments and/or deductibles that are favorable for those participating in health programs and disease prevention programs. Top of FormAARP v. United States EEOC, 226 F. Supp. 3d 7, 12 (D.D.C. 2016). Employers may also require employees to participate in wellness programs without running the risk of discrimination claims. Ortiz, 806 F.3d at 826. Finally, an employer does not violate GINA if they use, acquire or disclose an employee’s non-genetic medical information about a “manifested disease, disorder, or pathological condition.”
Thus, GINA allows those interested in having their DNA analyzed to do so without fear of discrimination from their insurance company or employer.
Hamil Little PC
Our business and healthcare law firm represents physicians and other healthcare providers. If you have questions about this blog post or any health care legal issue, contact us at (404) 685-1662 (Atlanta) or (706) 722-7886 (Augusta), or by email, firstname.lastname@example.org.
** Disclaimer: Thoughts shared here do not constitute legal advice. Please consult with an attorney to discuss your legal issue.