If you could find out today that there’s a good chance you would have Alzheimer’s disease in the future, would you want to know? Would you take the test?
Genetic testing is slowly changing the way doctors practice medicine and the way you as a patient receive care. The ability to look at your DNA for clues about your health is helping scientists figure out how to treat disease. Genetic testing can also help families plan for the future.
Take the case of Alzheimer’s disease. It affects as many as 5 million Americans. The disease is emotionally devastating; loss of memory and thinking skills eventually makes the person completely dependent on others for their care. In late-onset Alzheimer’s—the most common form of the disease—researchers have found that a mutation in a particular gene, called ApoE4 (pronounced “Apo” then “E” then “4”) increases a person’s risk of developing Alzheimer’s.
Although all patients with ApoE4 mutations don’t go on to develop Alzheimer’s disease, many do. As a result, more and more people are choosing the test that determines whether or not their DNA carries the mutation.
Unfortunately, that information can come with unintended consequences. Here’s the problem: Researchers recently found that people who discover they have the Alzheimer’s-linked ApoE4 mutation are five times more likely to buy long-term care insurance, wanting to prepare for their future and spare their families difficult financial and emotional choices. But when they go to apply for the coverage, the insurance companies ask about the genetic test and frequently deny coverage because of the Alzheimer’s linked gene.
This makes sense for an insurance companies’ bottom line, but it puts patients in a difficult position. The people who are most likely to need long-term care insurance become the ones least likely to qualify. This isn’t bad news just for patients and their families, but for all of us, as our country struggles to pay for the rising healthcare costs of an aging population.
When the human genome was first mapped, several policymakers became concerned about the potential for employers and insurance companies to discriminate based on a genetic test. Over several years, researchers, patients, politicians, insurance companies and employers finally negotiated the Genetic Information Non-Discrimination Act (GINA), which was signed into law by President Bush in 2008. Unfortunately, GINA only addresses healthcare insurance—leaving long-term care insurance out of the picture entirely.
Lawmakers in Washington are aware of this loophole and its impact on patients and their families, but it remains unclear how or when improvements to the law will be made. In the meantime, as you consider genetic testing, it is important to talk to your doctor and a genetic counselor about the potential advantages, disadvantages and the possibility of unintended consequences.
It’s something you should know, before you take the test.
 “Alzheimer’s Disease Fact Sheet,” NIH National Institute on Aging, http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-fact-sheet (accessed March 25, 2013).
 Taylor, D.H., Jr., et al. “Genetic testing for Alzheimer’s and long-term care insurance.” Health Aff (Millwood) 29 (January/February 2010): 102-108. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2931337/ (accessed March 25, 2013).
 David Schultz, “It’s Legal For Some Insurers To Discriminate Based on Genes,” NPR, January 17, 2013, http://www.npr.org/blogs/health/2013/01/17/169634045/some-types-of-insurance-can-discriminate-based-on-genes (accessed March 25, 2013).