Genetic testing technologies allow scientists to analyze human genetic material, including chromosomes, DNA, and RNA, revealing genetic variations that can affect a person’s health – putting him or her at an increased risk of a specific disease, for instance. These technologies are also quickly advancing. This has important implications for people’s healthcare premiums.
In 2008, the US federal government passed the Genetic Information Nondiscrimination Act (GINA), making it illegal for health insurance providers in the country to use genetic information in decisions about a person’s health insurance eligibility or coverage. This means that health insurance companies cannot use the results of a direct-to-consumer genetic test (or any other genetic test) to deny coverage or require you to pay higher premiums.
GINA prohibits a group health plan from adjusting group premium or contribution amounts for a group of similarly situated individuals based on the genetic information of members of that group. This is a change from the Health Insurance Portability and Accountability Act (1996), which allowed plans to adjust premiums or contributions for the group health plan based on genetic information. Even if a plan obtained genetic information about group members before GINA’s effective date (January 1, 2010), it cannot be used to adjust the group premium.
Plans can charge a higher group premium or contribution based on the manifest disease or disorder of an individual who is enrolled in the plan. This is because information about an individual’s manifested disease is not genetic information. Nonetheless, a plan cannot use the manifestation of a disease in one individual as genetic information about other group members to further increase the group premium.
You should be aware that a plan can take into account the costs associated with provided benefits for covered genetic tests – which will be more expensive when advanced technology is used – in determining overall premium or contribution amounts.
GINA Does Not Apply in All Genetic Testing Cases
GINA does not apply when an employer has fewer than 15 employees. So, if you work for a small company, it is possible that genetic testing could affect your healthcare premiums. GINA also does not apply to certain forms of insurance, such as disability insurance, long-term care insurance, or life insurance. Companies that offer these policies have the right to request medical information, including the results of genetic testing.
Some companies request information about genetic testing as part of their application process, whereas others do not. It is unclear whether genetic information will become a standard part of the risk assessment that insurance companies undertake when making coverage decisions. These tests are becoming more accurate, due to advancing technology, so it may be the case that this increased accuracy – a better understanding of an individual’s health risks – will alter someone’s healthcare premiums.
Group health plans and health insurers generally cannot request or require you or a family member to undergo a genetic test. However, there are three exceptions to this general rule:
- A healthcare professional who is providing healthcare services to an individual can request that the individual undergo a genetic test.
- If a plan conditions payment for an item or service based on medical appropriateness and this appropriateness depends on the patient’s genetic makeup, then the plan can condition payment for the item or service on the results of a genetic test.
- There is also an exception that allows group health plans and health insurers engaged in research to request (but not require) that an individual undergo a genetic test.
Advanced Genetic Testing Could Become Part of Routine Healthcare
In spite of concerns related to ethics and privacy, genetic testing could become incorporated as part of routine healthcare. This is because advanced genetic testing would enable faster diagnosis and more effective use of therapies, resulting in increased survival rates and a reduction in adverse drug reactions.
Yet even if advanced genomic testing is set to become part of routine clinical care, it is important to underscore that insurance companies may not legally be able to require or pressure you to undertake a predictive or diagnostic test in order to obtain insurance. But given that some companies may request such information, you should weigh the possible benefits and risks of direct-to-consumer genetic testing, including potential impacts on insurance coverage, before you start the testing process.
As genetic testing becomes more routine, it will be more common for doctors to be able to identify the risk of a potentially fatal disease. This may make some individuals worry that insurance companies will raise their healthcare premiums once an abnormality is found. James Lu, co-founder of Helix – a population genomics company – states that when an individual finds out risk information:
“They should be protected from any sort of discrimination from a health insurance perspective. That said, there’s always work to be done in this space. And I think, at a broad scale, privacy legislation that protects genetic information is going to be important as this becomes standard of care.”
Even if genetic testing becomes a common part of healthcare due to advancing technology, under GINA, plans cannot collect your genetic information, either before you enroll or in connection with your enrollment in the group health plan. Plans also cannot collect your genetic information as part of their underwriting process. This means insurers cannot collect this information for the purposes of determining premium amounts or premium differences in return for activities such as participating in a wellness program.
In summary, if you want to know how advanced genetic testing will affect your healthcare premiums, you should be aware of your rights according to the existing legislation. Generally, you are under no obligation to share your genetic information with your insurer; but as we have seen, there are some exceptions.