Genetic Information: Helpful or Harmful?
In recent years, companies like 23andMe experienced a rapid increase in popularity that is expected to continue well into the future . 23andMe and other genetic testing companies offer customers insight into their ancestry and genetic background. The information they provide includes information about certain genetic predispositions to a variety of life-threatening or terminal diseases . All customers have to do is pay a fee and send in a saliva sample for analysis .
The advent of genetic testing technology, and its availability at affordable prices, poses a variety of novel ethical questions to consumers, providers and insurance companies. We have all heard the expression “knowledge is power,” but is this always true? Long term, how will this increase in knowledge affect customers, doctors and medical and life insurance companies?
In 2008, the U.S. government passed the Genetic Information Nondiscrimination Act, known as GINA, which prohibits health insurance companies from discriminating against customers on the basis of their genetic information . GINA, while absolutely critical to ensuring that there is no “discrimination on the basis of genetic information with respect to health insurance and employment,” does not address the issue as it pertains to other types of insurance, including life insurance and disability insurance .
This poses a serious question: if you are young, healthy and curious about your genetic background and risks, should you get tested?
Proponents of genetic testing argue that it offers many potential benefits. The BRCA1 mutation is a relatively uncommon inherited mutation that suggests increased risk of breast and ovarian cancer compared to women without a mutation in the BRCA gene . Genetic tests offered by companies like 23andMe test for the BRCA1 mutation, and a positive result can lead people to take more aggressive preventative measurements, thus catching the disease earlier or evading it entirely .
Another morally problematic test offered by 23andMe is for mutations in the ApoE4 gene that suggest increased risk of developing Alzheimer’s . The disease is currently incurable, but learning of increased risk can help customers plan accordingly and prepare for the worst.
In addition to posing interesting ethical questions to those who purchase genetic testing, its availability affects life insurance and disability insurance companies as well. GINA Title I, which covers health insurance companies and prohibits them from discriminating on the basis of genetic information, does not regulate life insurance companies . Life insurers could therefore deny life insurance to people with increased risk of developing costly terminal illnesses late in life. This poses a potential threat to people who purchase genetic testing, as if they discover they carry a mutation known to increase risk of a particular disease, they could make themselves less eligible for high quality life insurance plans. While this could be a serious problem, life insurance companies would need to gain access to potential customers’ genetic information in order to gain this advantage.
On the flip side, genetic testing threatens life insurance companies who are forced to trust customers to reveal their medical risks. While GINA does not restrict life insurers from taking into account future health status when making offers for long-term coverage, insurers must rely on their customers to disclose the details of their genetic findings . People who test positive for mutations like BRCA1 or possess an ApoE4 gene mutation are more likely to want to purchase expensive life insurance plans, and are not likely to want to report their predisposition for fear of receiving a more expensive coverage plan. This would be very problematic for life insurance companies, which use complicated algorithms to approximate how much plans should cost based on the likelihood of customers to use funds .
Lastly, people who purchase genetic tests and find that they are at a very low risk for developing future medical issues are less likely to want to purchase expensive life insurance plans. The knowledge available through genetic testing therefore has the potential to financially harm life insurance companies, as it could create a market in which the only people who want coverage are those with a higher likelihood of developing serious and costly illnesses. Without substantially raising the price of life insurance plans to compensate for the increase in risk, life insurance companies will lose money.
23andMe is a brilliant concept and as chief executive Anne Wojcicki points out, there is much demand for their services . As genetic testing grows more common, it will be interesting to monitor how insurance companies react and how the industry will respond to this massive increase in knowledge.
1. "23andMe: How It Works." 23andMe, 2018. Accessed 25 July 2018.
2. The Genetic Information Nondiscrimination Act of 2008. Statutes at Large, 2008. Equal Employment Opportunity Commission. Accessed 25 July 2018. Public Law 122 STAT. 883.
3. Hayden, Erika Check. "The rise and fall and rise again of 23andMe." Nature: International Weekly Journal of Science. Accessed 25 July 2018.
4. Kolata, Gina. "New Gene Tests Pose a Threat to Insurers." New York Times, 12 May 2017. Accessed 19 July 2018.
5. "Late Onset Alzheimer's Disease." 23andMe. Accessed 25 July 2018.
6. Mayo Clinic Staff. "BRCA gene test for breast and ovarian cancer risk." Mayo Clinic, 30 Dec. 2017. Accessed 25 July 2018.
7. Office for Civil Rights. "Genetic Information." Health Information Privacy, U.S. Department of Health and Human Services. Accessed 16 June 2017.