If you had the choice to learn whether or not you have the mutation for Huntington’s Disease, would you want to know? Would you live your life differently? Would you see the world with new eyes? The choice to undergo genetic testing is a deeply personal one. Many individuals have no interest in obtaining their genetic information, believing the results they receive may negatively affect their daily lives: bringing depression and anxiety rather than clarity.
For those of us more open to the possibility of receiving bad news, or those of us who carry concerns for their future offspring, the results of genetic tests can generate life-changing consequences. You may discover that you carry a mutation for a disease that you will pass on to all of your children and make the decision to not have kids. You may find that you are at high risk for a degenerative disease that will affect your quality of life early on, as with Huntington’s Disease, ALS, Parkinson’s Disease, Alzheimer’s Disease, and many others. You may find that you are at high risk for breast cancer and decide to have a preventative double masectomy. The potential outcomes of these tests resemble nothing remotely trivial. They could induce a permanently altered perspective on your dreams, goals, and your own mortality. Given the potential to gain knowledge of this information about your future health—with perhaps a new comprehension of a known, tragic end to your life, all due to the results of a single test—the decision to participate in a genetic test cannot be made lightly.
Beyond the intricate, personal complications of how a genetic test may affect your life, further issues exist with the privacy of your genetic information once a test has been completed. In 2008, the Genetic Information Nondiscrimination Act (GINA) was established as an extension to the HIPAA Privacy Rule, dictating that genetic information is health information and must be kept confidential. GINA prohibits employers from hiring, promoting, or firing individuals based on an individual’s genetic information. In addition, GINA prevents health insurance companies from increasing or decreasing premiums based on the results of a genetic test. It also prevents employers and health insurance companies from requiring individuals to take genetic tests. Although these protections provide some degree of security, GINA’s influence does not affect policies for long-term care, disability, or life insurance.
On March 2nd 2017, the U.S. House of Representatives introduced H.R. 1313 to allow companies to implement wellness programs that include genetic screens, overturning many of the protections offered by GINA. This bill allows for health insurance premium reductions of up to 50% to be offered for those who participate in genetic screens. By default, those who decline these programs would face higher premiums, forcing individuals to decide between maintaining their genetic privacy or saving money. In addition, the bill proclaims that collecting genetic information about an individual through a workplace wellness program is a legal way to obtain genetic information about another family member—essentially, the results of a genetic test performed on your spouse or child could be added to your own genetic health data.
Employers and health insurance providers would benefit immensely from the genetic data of their constituents. This information could provide a more accurate assessment of the medical costs associated with genetic health conditions that may arise over the duration of an individual’s lifetime or that may affect their children. With this, they can calculate the overall risk and costs of the pool of individuals within their health care plan and adjust premiums in turn.
Ethically, however, there are major questions that remain unanswered regarding the individuals that these policy changes would affect. Should someone be charged higher premiums based on genetic conditions that they might experience in the future? Not all disease mutations will result in a disease outcome. In fact, there are many diseases, including Alzheimer’s, breast cancer, type 2 diabetes, and Celiac disease, where genetic mutations only confer an association with a condition—not a guaranteed outcome. Often, whether or not an individual gets the disease depends on environmental factors, overall health, and diet. And beyond this, should individuals be charged higher premiums based on genetic conditions that their children might inherit? In situations where only one parent carries the mutant gene, there is only a 50% chance that a child will inherit the mutation. Health premium increases based on genetic risks could be distributed throughout a pool of individuals, but the fundamental ethical problem remains: should employers and health insurance providers be allowed to mandate genetic tests and exploit genetic health information?
Concerns about these distinctions and the impacts they may have on the American workforce remain unaddressed by policymmakers. In the meantime, organizations like The American Society of Human Genetics and The National Council on Disability have publicly expressed their discontent with H.R. 1313. For now, the fate of our genetic information remains uncertain. Contact your representative to let your voice be heard.
About the Author
Tina Ethridge is an undergraduate studying Applied Biotechnology with a minor in Genetics at the University of Georgia. In her free time, she enjoys hiking, cycling, and going on adventures with her retired racing Greyhound. Her favorite place to enjoy nature is at the top of Yonah Mountain in Helen, GA.