Cover Me, GINA
What laws exist to protect people from discrimination after genetic testing or other genetic services?
The Genetic Information Nondiscrimination Act or GINA prohibits employers and health plans from using genetic information to discriminate against individuals. Genetic information is defined to include genetic test results, but also includes family medical history. GINA went into effect in 2009.
The Health Insurance Portability and Accountability Act (HIPAA) was also amended in 2013 to explicitly classify genetic information as personal health information (PHI).
Are there gaps in the law that could put people at risk?
GINA does not address life, disability, or long-term care insurance.There is no legal protection against discrimination by firms that offer those policies. However, that doesn’t mean insurance companies definitely will deny policies or charge higher premiums. Also, firms can use family medical history to make policy decisions, too, regardless of whether a person has had genetic testing.
Some state laws will prevent an insurance company from denying life insurance based on the possibility of a health issue in the future, but the cost of the policy could still be affected.
GINA does not apply to employers with fewer than 15 employees or US military receiving benefits through the Veterans Health Administration or the Indian Health Service. However, some other protections exist for these populations, such as President Clinton’s Executive Order of 2000 to protect federal employees.
Are there precautions to take before genetic or DNA testing?
Yes, some people get their insurance policies in place before they seek genetic services or genetic testing. Taking this step is particularly helpful for people who are generally healthy with no known genetic syndrome in their family history. People with a history already have an obligation to disclose that family medical history if they are asked.
People should definitely answer the insurance companies’ questions honestly about genetic testing and family medical history. People who lie risk having their policies rescinded if the mistruth is revealed.
Does this mean people should not have genetic testing?
Definitely not. Many people have genetic testing without any problems with discrimination. GINA provides good protection and the absence of protection against discrimination by the other types of insurance does not necessarily mean that everyone is experiencing discrimination.
For many, it comes down to weighing the benefits and risks. For people with a medical or family history that suggests an inherited syndrome for which screening or other interventions are available, genetic testing may make sense. For those who are pursuing genetic testing for preventive reasons, it might be smart to get life, disability, and long-term care insurance policies in place and inquire whether the companies are able to cancel them.
1. What is genetic discrimination? National Institutes of Health, Genetics Home Reference. Last updated August 6, 2019. Accessed August 13, 2019: https://ghr.nlm.nih.gov/primer/testing/discrimination
2. Genetic Discrimination. National Human Genome Research Institute. Last updated April 17, 2017. Accessed August 13, 2019: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
3. Genetic Information Discrimination. US Equal Employment Opportunity Commission. Accessed August 13, 2019: https://www.eeoc.gov/laws/types/genetic.cfm
4. Matloff, E. What You Should Know About Insurance Before You Have Genetic Testing. Forbes.com, June 26, 2019. Accessed August 14, 2019: https://www.forbes.com/sites/ellenmatloff/2019/06/26/what-you-should-know-about-insurance-before-you-have-genetic-testing/#34c298a95734
5. Genome Statute and Legislation Database. National Human Genome Research Institute. Last updated January 10, 2019. Accessed August 14, 2019:
6. HIPAA Omnibus Rule. 2013. Accessed August 14, 2019: https://www.govinfo.gov/content/pkg/FR-2013-01-25/pdf/2013-01073.pdf August 13 2019