Joyce speaks with genetic counselor Ellen Matloff about her newest venture, MyGeneCounsel.
Ellen Matloff, MS, CGC, is the President and CEO of My Gene Counsel. Ellen is the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine and a lead plaintiff in the 2013 United States Supreme Court gene patent case. Ellen has authored more than 50 scientific publications in the field, is an established educator, lecturer and media spokesperson and has received national awards for her ongoing patient advocacy efforts.
She was the 2013 honoree of ArtBra New Haven for her work with hereditary breast cancer, and particularly for helping to challenge the validity of patenting the genes for breast cancer.
Ellen’s area of special interest is BRCA I and BRCA II mutations, which vastly increase the probability of a carrier developing breast and/or ovarian cancer. For the past 18 years, she has been dedicated to patient and provider issues in cancer genetic counseling, and the impact of genetic patents on patients and clinical practice.
Ellen was one of the lead plaintiffs in Association of Molecular Pathology v. Myriad Genetics, the landmark case before the U.S. Supreme Court, which challenged the validity of patenting naturally-occurring substances from the human body. Myriad Genetics had patented the BRCA I and II genes, and held the monopoly on testing. This effectively froze research, and made necessary testing unaffordable for many patients, leaving them to make huge decisions about their treatment without vital information. Ellen worked tirelessly for the interests of breast cancer patients and their families. This decision has led to drastically lower prices of genetic testing, making it possible for more patients to afford this technology.
As genetic testing became more common and also more complex, she served as the senior author on several publications documenting national errors in the misinterpretation of genetic test results. From these experiences, Ellen created My Gene Counsel and its associated digital tools that can be used in parallel with genetic testing to help ensure that results are used accurately and effectively.
