10:05 - 10:50 amSaturday, September 6
LK 130
Ethical, legal, and practical challenges in genetic data sharing
LK 130
Ethical, legal, and practical challenges in genetic data sharing
Founder, Brave Bosom
MS, CGC, President & CEO, MyGeneCounsel
Research Professor, Duke University
Last year, the historic Supreme Court Case, Association of Molecular Pathology v. Myriad Genetics, opened diagnostic testing and genetic research in new ways, but also presented new challenges for genetic... Read more

Description

Last year, the historic Supreme Court Case, Association of Molecular Pathology v. Myriad Genetics, opened diagnostic testing and genetic research in new ways, but also presented new challenges for genetic diagnostics and biotech. 

Join ePatient activist Andrea Downing, bioethicist Bob Cook-Deegan, and genetic counselor Ellen Matloff in a panel discussion about legal, ethical, and practical challenges in gene sequencing technology and genetic diagnostic testing. Our panel will explore what the future holds for patients who carry BRCA mutations, and the role of DNA sequencing technology in clinical decision making for patient communities: 

  • A view from the trenches of last year's Supreme Court case from an ePatient, a genetic counselor, and a policy analyst. We will talk about our respective roles before, during, and after AMP v. Myriad.
  • Developments and legal and ethical challenges in genetic data sharing in a post-Myriad world. Ongoing litigation and movement to "Free the Data." 
  • Practical benefits of genetic data-sharing for the BRCA community as women and men who carry these mutations seek to make informed decisions. 

Each panelist has attended medical conferences in the past, but never before have we seen an opportunity to bring the viewpoints of a patient, genetic counselor, and science policy scholar together in a panel discussion about genetic data sharing. Our focus will be on patient activism, and how to inspire and empower patient communities to understand the meaning of the ePatient phrase gimme my damn data in the world of personalized medicine. 

Andrea Downing is a BRCActivist. When she was 25 years old, she discovered that she has up to an 87% lifetime risk of having breast cancer and up to a 60% lifetime risk of ovarian cancer when she tested positive for a BRCA1 deleterious gene mutation. This mutation was passed from her great grandmother to her grandmother to her mother and now to Andrea. Her great grandmother and grandmother died because of this mutation, and her mother was diagnosed with Stage 3 Cancer in her early thirties.

This has been an exciting and turbulent year in the world of BRCA. In April, Andrea stood at the steps of the Supreme Court to tell her story as oral arguments were heard in Association of Molecular Pathology v. Myriad Genetics. This case made history when the right to patent human DNA was overturned 9-0 by the Supreme Court. Now she serves on the steering committee of a project called Free The Data.

Ellen T. Matloff, M.S., C.G.C., received her Bachelor's degree in Biology from Union College, her Master's degree in Genetic Counseling from Northwestern University, and her board certification from the American Board of Genetic Counseling. She specializes in hereditary breast and ovarian cancer syndrome (BRCA1, BRCA2), hereditary colon cancer syndromes (HNPCC, FAP), and rare cancer syndromes. Her interests include patient and provider issues in genetic counseling, adverse events in genetic testing and the impact of patents on clinical practice. Ms. Matloff was a lead plaintiff in the 2013 Supreme Court case against gene patenting.

Robert Cook-Deegan became Director for Genome Ethics, Law & Policy in July 2002. He was previously director of the Robert Wood Johnson Foundation Health Policy Fellowship program (2000-2002) at the Institute of Medicine (IOM), National Academy of Sciences, a Robert Wood Johnson Health Policy Investigator at Georgetown University (1999-2002), and a seminar leader at Stanford-in-Washington (1996-2003). He worked at The National Academies in various capacities from 1991 until coming to Duke.

He is the author of The Gene Wars: Science, Politics, and the Human Genome (New York: Norton, 1994; paperback 1996; tr. Korean 1995, Japanese 1996) and an author on over 200 articles.

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