Why the rise of DNA testing is creating challenges — and an opportunity
Twenty years ago, virtually all people seeking genetic testing were individuals diagnosed with diseases possibly linked to their genetic makeup. Today, millions of people order genetic tests to learn about their ancestry, as well as to understand what their genes say about their future health.
This rapid growth has created what some might see as a big problem and others might see as an opportunity. The problem? There hasn’t been a corresponding increase in genetics education and training health care providers about it, meaning that many people are reaching out to health care providers who are ill-prepared to incorporate genetic test results into clinical practice. The opportunity? Results from genetic testing can help health care providers engage with their patients on a deeper level about personal health risks, promoting health, and preventing disease.
Help may be on the horizon. A team representing the National Society of Genetic Counselors, an association of thousands of genetic counselors across the country, published guidance in early January for genetic counselors and other health care providers to handle what the authors call elective genomic testing: results from DNA tests people seek out on their own — as opposed to tests ordered by their doctors for a specific reason — and subsequently bring to their health care providers.
These tests are often obtained by apparently healthy individuals who wouldn’t qualify for conventional diagnostic genetic testing, and can even be done outside of traditional health care settings, using direct-to-consumer DNA tests like 23andMe, the company I work for, and others. The results of elective genomic tests can include information about risks for rare or common diseases, whether an individual is a carrier for a disease, or pharmacogenetics — how genetic information influences a person’s response to medications.
The new guidance from the National Society of Genetic Counselors recognizes that people not only want this information, but millions already have it and are turning to genetic counselors or their doctors with questions. One recent YouGov survey found that as many as two in 10 Americans have already had a genetic test, and 65% of those surveyed said they’d want to test even if it meant they could learn they had a serious health risk.