Genetic discrimination may not be a pair of words you naturally hear every day, but it is a real issue that occurs in our society. This form of discrimination can arise when someone is treated differently due to having a gene mutation that could possibly lead to a disease or disorder. Fortunately, under the Genetic Information Nondiscrimination Act (GINA) passed in 2008, your genetic history cannot be used by a health insurer or employer for discriminatory purposes, such as decisions to hire or insure.¹
Efforts to pass GINA began back in 1995 during the Human Genome Project. As genetics advanced, there were concerns of confidentiality as results surfaced; individuals willing to contribute their genetic information to advance science deserved protection with their participation.² The act itself was not passed until 2008 under the George W. Bush Administration.
GINA protects individuals from numerous situations in both employment and health insurance. Under GINA, it is unlawful for health insurance companies to request or require an individual to complete a genetic test or purchase genetic information for liability purposes.¹ Health insurance companies are only permitted to request genetic results to verify the necessity of a procedure or treatment that has been billed; in that case, they are allowed to have minimal information to know what the test was for, and whether it’s covered or not.¹
In the workplace, employers cannot fire, discriminate, limit or segregate employees because of their genetic information.¹ Additionally, employers cannot legally access genetic history except if an employee accidentally finds or hears the information, if it is for employee wellness programs, if the information is individually identifiable, available to the public, employee provided, or if it is permissible under the Family and Medical Leave Act request in order to take off work to care for oneself or a sick family member.¹ When these exceptions occur, employers must protect genetic information in a confidential manner.
The Limitations of GINA
While GINA is seen as a major success for advocates, and has most likely protected countless individuals, it’s important to recognize what is not included under GINA. GINA does not prevent life insurance companies from looking at genetic results, and basing their coverage decisions on the information. Therefore, if your genetic data appears to make you a higher risk, the rates could possibly skyrocket.⁵ Furthermore, disability and long-term care insurance are not covered under GINA.
In other parts of the world, life insurance lacks similar protection. For example, in Australia, life insurance companies are allowed to use the population’s genetic histories as a deciding factor in who can actually apply and receive life insurance.⁴ Australian companies can increase costs, decide which disorders and diseases are covered, and even deny an applicant due to these factors. One study by Keogh et al in Australia demonstrates that patients willingness to participate in genetic testing is affected by whether this information can get back to life, trauma, and/or disability insurance companies.³ When individuals were told that their information would not be reported or used negatively, participants were more willing to undergo genetic testing.³ When they were informed that their information would be shared with insurance companies, participation decreased.
Genetic testing can be used to help inform, prevent, and possibly protect those from a disease or disorder that could occur. When applying for necessary insurances, it is important to be informed of which policies are protected under GINA, and which are not. In the years to come, we can only hope there will be more protection for those with genetic conditions, so that individuals who need to partake in testing can do so without the surrounding concerns.
To learn more about GINA and what all is protected, check out this informative PDF: http://www.ginahelp.org/GINAhelp.pdf
Endnotes:
1. Genetic
Alliance,
the
Genetics
and
Public
Policy
Center
at
Johns
Hopkins
University,
and
the
National
Coalition
for
Health
Professional
Education
in
Genetics, “GINAhelp,” May 2010, http://www.ginahelp.org/GINAhelp.pdf
2. National Human Genome Research Institute, “Legislative History of GINA,” NIH, Apr. 2017, https://www.genome.gov/27568535/legislative-history-of-gina/
3. Louise A Keogh et al. “Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications?” The Medical Journal of Australia, no. 5 (2009): 255-258.
4. “Australians can be denied life insurance based on genetic test results, and there is little protection,” The Conversation, last modified August 24, 2017, https://theconversation.com/australians-can-be-denied-life-insurance-based-on-genetic-test-results-and-there-is-little-protection-81335
5. Gina Kolata, “New gene tests pose a threat to insurers,” The New York Times, May 12, 2017, https://www.nytimes.com/2017/05/12/health/new-gene-tests-pose-a-threat-to-insurers.html
