By the end of next year, roughly 100 million people will have taken an at-home DNA test, according to MIT Technology Review. That’s more than the combined populations of Texas, California and Florida. These at-home genetic tests will be one of the most popular gifts of this holiday season, just as they’ve been in recent years. By simply spitting into a tube and sending it off to a lab, people will unlock the mysteries inside their genes. They’ll learn where their family is from, whether they’re genetically predisposed to hate cilantro, and frequently, whether they are at risk of serious diseases.
For the people who opt in to the health portion of these tests, their results can leave them with more questions than answers: If test results show they have the e4 variant on their APOE gene, which indicates an increased risk of late-onset Alzheimer’s disease, does that guarantee they’ll get the dreaded disease? How late is late? And if the variant doesn’t show up, does it mean they’re in the clear for Alzheimer’s?
All at-home genetic testing comes with tutorials, FAQs and links to more information. But these only go so far when it comes to helping consumers understand their results. What people need in that moment is not more videos and tutorials; they need a knowledgeable human voice. They need an expert trained in genetics and counseling who can interpret their test results and provide guidance about next steps.
For those seeking an explanation of their results, their first stop is usually the family physician, most of whom are not trained in human genetics. A study last year in Health Affairs found primary-care doctors are optimistic about genetic testing but aren’t confident about their ability to discuss genetic testing or offer guidance to patients. And so, the consumer is left to anxiously wonder: Could their results alter the course of their lives? Are there steps they should take now to promote their future well-being?
The solution is genetic counselors, who have advanced education and training in both the science of genetics and psychological counseling. These experts eat, sleep and breathe genetics. They understand the intricacies of test results and stay up to date on this rapidly changing field so they can walk consumers through their results and put those results into context. For example, a test result showing a consumer does not have a BRCA mutation — a positive result means a significantly elevated risk for woman of breast and ovarian cancer, and can lead to breast, prostate and other cancers in men — is not the same as a clean bill of health. Many at-home genetic testing companies only screen for a small set of BRCA mutations despite roughly 1,000 variations existing.
It’s also possible for a test to show a false positive or false negative. This kind of terrain is almost impossible for a consumer to navigate without a genetic counselor whose job is to ensure patients are fully informed. That often means getting a confirmatory test. A genetic counselor can ensure a patient gets the right test to confirm, or refute, the at-home results. Patients are then empowered to make decisions about their health and well-being.
Genetic counselors are the key to getting the most out of the amazing new science of genetic testing. Unfortunately, many communities lack access to genetic counselors. Right now, fewer than 5,000 certified genetic counselors are in the U.S. and Canada. According to a report from the National Society of Genetic Counselors, some states, including Wyoming, Vermont and Mississippi, each have fewer than five genetic counselors. West Virginia has zero genetic counselors. The wait to see a genetic counselor anywhere in the U.S. can be several months.
Without access to a knowledgeable guide, consumers might make the wrong choices about their health. Too often, they turn to the internet, which — it should come as no surprise — holds a never-ending supply of confusing and misleading information.
DNA ALLY exists to save people from going down the internet rabbit hole … giving them convenient and affordable access to experts who can help make sense of their DNA results. In a 20-minute phone or video consultation, a DNA ALLY genetic counselor can replace confusion with clarity and give consumers the peace of mind and guidance they need.
While at-home DNA tests have provided a valuable service by making it easy to tap into our own genetic data, we need to be able to interpret that data for it to be of any use. That’s why a DNA ALLY consultation is an essential pairing for anyone taking or gifting an at-home DNA test kit this holiday season.
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