Co-Founder and CEO of Gene Counsel, Ellen Matloff is a certified genetic counselor who founded and served as the Director of the Cancer Genetic Counseling program at Yale. In 2013 a series of events unfolded that made her realize that a digital tool was needed to keep up with the rapidly changing field of genomics.
What is the story behind founding My Gene Counsel?
My co-founder, Danielle Bonadies, and I are genetic counselors who ran the Cancer Genetic Counseling Program at Yale School of Medicine for many years. From deep within the field we could see that genetic testing was rising at a tremendous pace and that many people having genetic testing were doing so without the help and expertise of a genetic counselor. Many physicians were being forced to order testing by themselves, because they didn’t have a genetic counselor on staff to refer to or the wait lists were too long. As a result, mistakes were being made that had serious implications for patients and their families. We saw an opportunity to combine genetic counseling expertise and technology to make critical information available to all patients and clinicians using genetic testing through our Living Lab Reports. These reports also update over time, sending the patient and clinician emails or texts so they stay in the know.
What is the importance of genetic counseling for people who are taking genetic tests?
Genetic counseling helps people get the best test to answer the question they need answered, and also helps them understand and use their test results accurately and effectively. Without these things, genetic testing is not helpful and can even be harmful – so the importance of quality genetic counseling is paramount.
What is the biggest concern or risks with direct-to-consumer genetic tests and the results that are provided to consumers?
The biggest concern is that a consumer is paying for a test that will not answer their question correctly and could be doing more harm than good. Privacy and how your genetic test results will be used by those companies can also be a concern.
Could you tell us a bit more about how your service works and what the process is for the consumer?
The majority of our customers are health systems, genetic testing companies, research foundations, or other companies that pay for their consumers to get our Living Lab Reports.
What sort of costs can consumers expect from using your service?
Most consumers will have their expenses covered by the company providing them with free Living Lab Reports. If your health system or genetic testing company does not provide this service, ask them to!
What advice do you have for consumers who are looking at taking a direct-to-consumer genetic test?
If you are taking a DTC test to answer a serious medical question, speak to a certified genetic counselor first to make sure you are getting the right test. You can find a genetic counselor at NSGC.org under ‘find a counselor’ and you can even speak to one by phone! If you are taking a DTC test for fun or ancestry information, make sure you first understand the privacy risks for you and your family members.
