Certified genetic counselors must be relied on to review genetic test results.


Ellen Matloff, certified genetic counselor and CEO of My Gene Counsel, issued the following statement on news regarding an Oregon woman claiming that misreading of her genetic testing results led her to undergo unnecessary surgeries, a mastectomy, and a hysterectomy. According to The Washington Post story, dated October 24, the woman’s lawsuit claims that her medical team “continued to negligently rely upon misinterpreted genetic testing results.”

The increasing complexity of genetic testing amplifies the need to assure that the results are interpreted and used accurately. Certified genetic counselors are the experts who do this work. While we cannot comment on the specifics of the Oregon lawsuit, I can say, based on two decades as a practicing genetic counselor, that as genetic testing became more popular and more complicated, and more clinicians began ordering genetic testing without a certified genetic counselor, we began to see patients whose test results were misinterpreted. Sadly, some people had their breasts, ovaries, uterus, even colons removed because their test results were misinterpreted. Others were diagnosed with cancers, often at late stages, because they were misinformed that their test results were normal.

Matloff and her team have published three papers dating back to 2010 documenting national errors in the misinterpretation of genetic test results. They are available on the My Gene Counsel website.

Seeking to help overcome these problems and to ensure genetic testing results are used accurately and effectively, My Gene Counsel was founded three years ago to provide a source of accurate, unbiased genetic health information written in language that patients can understand and use. Digital genetic counseling information is created, vetted, and continually updated by leading certified genetic counselors, physicians, and consumer advocates.

For patients, the National Society of Genetic Counselors provides a range of resources on their website: http://www.nsgc.org.

About My Gene Counsel
My Gene Counsel, LLC, a Connecticut-based technology company, has developed a secure digital genetic counseling platform that links patients and their clinicians to updating streams of information tied to their genetic test results. The company, founded by Ellen Matloff, a genetic counselor and currently president and CEO of the company, is engaged in a long-term partnership with Boston Technology Corporation to deliver a digital form of genetic counseling that is accurate, scalable, and updates with new data while assuring that results are written in plain language that clinicians and consumers can understand. To learn more, please visit http://www.mygenecounsel.com.