According to British historian Alison Plowden, “the laws of genetics apply even if you refuse to learn them.” This truism, along with much of the momentum in this area, draws on the underlying assumption that the more we know about our 46 chromosomes, the better off we’ll be!
And thanks to major advances in genetic testing and screening, we are closer than ever to conquering the laws of genetics. Over 2,000 genetic tests are available and counting. 23andMe’s genetic screening tests (finally approved by the FDA in April) help assess risk for Alzheimer’s, Parkinson’s, and celiac diseases. Other predictive genetic tests, like the widely available BRCA test, help identify mutations that strongly correlate to the development of many cancers. Parents can screen their baby for a host of conditions during various stages of pregnancy. There are genetic tests on the rise that even help oncologists determine which cancer treatment will work best for a specific patient. Anyone looking to browse more options can check out the NIH’s Genetic Test Registry.
It seems we have the world of genomics figured out, right? Wrong.
Genetic tests may be widely available, and at declining price points, but health care providers, payers, employers, and consumers alike are far from fully understanding when and how to use these tests as part of their medical care. Let’s take a look at some of the areas of concern:
- We still have a lot to learn about when and how a genetic test is worthwhile. Some genetic testing and screening certainly has the potential to make a world of difference when identifying preventative actions or treatments, but this is not always the case. To avoid overuse, patients need to be able to rely on their doctors to decide when they can benefit, but one study showed that 92% providers still struggle to discern when a genetic test is needed and when it’s not.
- The results are in. Now what? Cigna reports that the number of genetic tests completed almost doubled from 30,000 in 2013 to 65,000 in 2016. Many health plans and employers are worried that the more patients learn from testing, the more likely they are to seek additional testing and procedures, some unneeded and invasive. We still have a lot to learn about how to mitigate unnecessary spending related to genetic testing to ensure it is producing value!
- What if our results are used against us? Consumers should think carefully about how a test result can be used to both help and hurt them. While the federal Genetic Information Nondiscrimination Act (GINA) makes it illegal for health plans to deny coverage based on genetic testing results, consumers still face discrimination by life, disability, and long-term care insurance providers. And new proposed legislation would enable employers to demand genetic testing results from their employees as part of their wellness program.
These major concerns are causing health plans and employers alike to think carefully about whether and how to offer genetic testing benefits for their populations. Catalyst for Payment Reform has been thinking about this topic too in an effort to help employers and other health care purchasers figure out how to navigate the risks and opportunities associated with these technologies.
We’re launching a Collaborative on this topic in November!
Catalyst for Payment Reform is convening a group of employers looking to get smart on the risks and opportunities of incorporating genetic testing and screening into a health and wellness benefits strategy. Participants will attend monthly meetings to hear from peers, subject matter experts, and vendors. We’ll be kicking things off in November! Email Ryan Olmstead (rolmstead@catalyze.org) if you’re interested in learning more!