We all want patients/consumers to have the information they need for reducing their risk of getting breast cancer as well as to be empowered with information so they can embark on shared decision-making with their oncology treatment team. Enabling consumers to get a genetic testing kit for self-collection, with results sent to their home, has now happened, courtesy of the FDA.
This direct-to-consumer issue is serious because ramifications can include unwise decisions that were based on limited information. Given this level of access, patients may assume that if their test is negative for a breast cancer gene mutation, they have no risk of getting cancer; or if their test is positive, that they are doomed to get several types of cancer. So we need to caution our patients about traveling this direct-to-consumer road.
Those navigators involved with community outreach need to explain, at health fairs and other venues, that it is smarter to get genetic counseling from professional individuals certified in genetics counseling rather than taking this test as an opportunity to learn about their genetic status. The test is easy to do; the interpretation of the results is not. It would be terrible to have consumers not get a mammogram because their test was negative. Their family history, other risk factors, and lack of testing for other breast cancer genes may actually point to them being at high risk for getting breast cancer. And what do the test results mean for siblings, offspring, and other family members?
These issues illustrate why genetic testing should not be taken on single-handedly by a patient or consumer. Without professional counseling, testing should not happen.