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.