Can someone own my genes?

In this conversation, Ellen Matloff, a certified genetic counselor and CEO of My Gene Counsel, discusses the implications of gene ownership and patents, particularly focusing on the BRCA gene patent case against Myriad Genetics. She shares her journey from being a cancer genetic counselor to becoming an individual plaintiff in the gene patent case. We discuss the challenges faced in the legal battle and the impact of the Supreme Court's decision in 2013. The discussion highlights the importance of access to genetic testing, the intersection of law and genetics, and the implications of gene patents for research and innovation in the field.

Takeaways: 

• There is a need for experts who have a legal understanding in genetics.
• The BRCA gene patent impacted testing costs and test availability.
• Ellen faced significant pushback and resistance for her advocacy.
• The ACLU and Association of Molecular Pathology (AMP) played a crucial role in bringing the case to court.
• Research on BRCA genetics increased after the patent was overturned.
• Ellen’s persistence in advocacy was driven by patient needs.

Ellen T. Matloff, MS, CGC is a certified genetic counselor and the CEO of My Gene Counsel, a digital health company that provides scalable, updating genetic counseling solutions for health systems, research studies, pharma and data partners. Wondering how to keep all of your past patients with + or VUS findings up to date? mGC is your answer. Matloff founded the Yale Cancer Genetic Counseling program, served as its director and a faculty member at Yale School of Medicine for 18 years, and was an individual plaintiff in the 2013 SCOTUS BRCA gene patent case. She serves as the Forbes.com contributor on genetic counseling, genetic testing, and digital health.

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Here are more resources related to today’s topic:

• AMP v. Myriad: The Fight to Take Back Our Genes from ACLU
• Direct to Confusion: Lessons Learned from Marketing BRCA Testing by Ellen Matloff and Arthur Caplan
• Current legislation on the Patent Eligibility Restoration Act or PERA, which could allow for gene patents to return
• Review on “The Genome Defense by Jorge L. Contreras” from FORCE

*Update- Sam Raha will be the new CEO of Myriad Genetics starting in April 2025.

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Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. T