Talk to a genetic counselor about your DNA test results.

Genetic Counselors Should Be Regular Part Of DNA Test Protocol  

Genetic testing is highly technical and complex. It can have serious, life-changing results for both consumers and their families. That’s why the American College of Medical Genetics and Genomics advises that consumers talk to a certified genetic counselor for help navigating test results as well as understanding the implications of those results and deciding on the next steps. 

The ACMG recommends consumers involve a certified genetic counselor even before testing, to advise them on test functionalities and options and facilitate genetic risk assessment, diagnosis and disease management. Consumers also need expert advice to prevent misinterpretation of results and inadequate disease management (or prevention) and follow-up. The ACMG says certified genetic counselors can help consumers understand the ambiguities and limitations of DNA tests in a way that is linguistically and culturally appropriate. In its statement laying out these guidelines, which are designed to guide and protect consumers, the ACMG also cautioned that privacy issues must be addressed before testing. Consumers should know who will have access to their test results, how their data will be protected, whether it will be sold to third parties and what the implications are for any personal or family-related life, long-term care or disability insurance. 

Read the whole statement here.

primary care phyisican and patient

After A Genetic Test, People Need More Than What Primary Care Physicians Can Offer

National Geographic debuted the first direct-to-consumer (DTC) DNA tests in 2005, hoping to trace the history of human migration with The Genographic Project. Researchers expected to sell 1,000 kits over the ensuing few years, but 10,000 were sold the first day.

People clearly have a deep craving to understand their genes, and not just so they can discover their ancestry. More people are taking at-home genetic tests to learn what health secrets might be hidden in their DNA.

Scientists are finding more conditions to test for as sequencing methods have improved and costs have fallen. Researchers estimate more than 75,000 DNA tests are available, with another 10 coming onto the market daily.

That’s created an increasingly complicated landscape for patients and their primary care physicians (PCPs). While at-home DNA kits only test for a a handful of genetic conditions, they are often giving consumers information they aren’t sure what to do with. Most people will turn to their PCP, but too often that person is at a loss for what to do next.

Several studies have determined PCPs lack the necessary training and knowledge about genetics and genomics to advise patients or to use test results in clinical management. Most PCP practices are rarely set up to accommodate the “time-intensive visits that counseling on DTC genetic testing results typically require,” according to a 2018 paper in the American Medical Association Journal of Ethics.

Another issue is that most PCPs receive limited genetics education during medical school training and even less once they enter residency and beyond. Those PCPs might not be prepared to lead a patient through the meaning of test results nor can they address a patient’s needs based on a DTC test result. For example, a BRCA1 and BRCA2 negative result on a DTC test in a patient of non-Ashkenazi Jewish ancestry, who has a strong family history of breast and/or ovarian cancer, should be reviewed with caution and might require more comprehensive genetic testing. Such subtleties are not always known to the PCP.

Experts have recommended for years that the medical community identify strategies to ensure that physicians are knowledgeable about genetics and genomic medicine. The American Medical Association’s Journal of Medical Ethics, as far back as 2009, wondered whether nongeneticists were prepared for the rise of at-home DNA testing. The conclusion: No. Last year, the same journal advised primary-care clinicians to be open to questions from patients, but said most should refer their patients to genetic specialists.

PCPs aren’t alone in being the dark about genetics and genomics. Even specialist physicians can be overwhelmed. An American Cancer Society study in 2017 found 93% of pediatric oncologists preferred to speak to a genetic counselor themselves before disclosing parental mutations that might be passed to offspring.

The shared thread here is the need for genetic counseling whenever a DNA test is taken. For those who take these tests at home, the fastest and easiest way to get that much needed counseling is through a company like DNA Ally, which can immediately connect people with genetic counselors. DNA tests can teach people so much about themselves, but they have to listen to the right teachers.

Doctors with a stethoscope

Why Aren’t DNA Tests Part Of Regular Medical Care?

Precision medicine is the idea that using a patient’s sequenced genome, doctors can tailor medical treatment to that person’s specific genetic instruction book. But to truly get to that world, DNA testing would have to become much more routine. So what’s holding us back? An article from the World Economic Forum points to four main culprits: doctors having limited expertise in genetics, a lack of genetic counselors, workflow issues and insurance not paying for genetic tests.

To learn more, you can read the whole article here

stethoscope and laptop portraying Primary care physicians genetic testing

Study Shows Primary Care Physicians Don't Know Enough About Genetic Testing

Most primary care physicians (PCPs) receive some genetics education during medical school. But a survey of 488 PCPs in New York City found they considered the training inadequate to assist patients at high risk for genetic conditions. They also said they lacked the training to confidently interpret DNA test results. Researchers concluded this training deficit will become a growing problem now that DNA testing is more affordable.

Read more here.