Ambry Genetics feels privileged to have had a part in telling the stories of some of the people who were involved with the SCOTUS decision on June 13, 2013. We have shared the struggles genetic counselors felt to provide patients the best available health care options, the emotions of hearing the verdict on that day, and the hopes and concerns insiders in the genetic testing industry have for the future. Overall, we come away encouraged and optimistic about what’s next. The two common threads tying together every quote, interview, and blog are excitement for scientific advancement and passion for people.
Our week of posts showed the effectiveness of patient advocacy that continues to demand equitable care for all. It also demonstrated the impact of genetic testing on patient lives, when they receive an answer and can work toward their best possible health by having the information they need. Advancement comes from diverse knowledge and perspectives and meaningful collaboration.
Thank you for joining us in the celebration of The Day Genes Were Freed. Below are a the videos and quotes that inspired our team in case you missed any of them. #KeepGenesFree
Genetic Counselors Remember
We asked genetic counselors what the day of the SCOTUS ruling was like and how it affected them. Click on their names below to view their videos.
Jessie Gryzbowski, MS, LCGC
Sr. Medical Science Liaison-Oncology
Ambry Genetics
Stephany Connor, MS
Manager, Reporting – Cancer
Ambry Genetics
Carrie Horton, MS, CGC
Sr. Medical Science Liaison – Clinical Research & Collaborations
Ambry Genetics
Melissa Parra, MS, CGC
Director of PMO
Ambry Genetics
Margo Gallegos, MS, CGC
Genomic Science Liaison
Ambry Genetics
Thoughts from Those Involved in the Case
REALM IDx CEO Aaron Elliott was Chief Scientific Officer at Ambry Genetics in 2013. He is well-versed in the struggle for a lab to offer genetic testing when over 20% of human genes had been submitted for patents. With the SCOTUS decision, labs could offer more comprehensive panels at affordable prices for patients and clinicians. “It's very well proven at this point that by sharing data throughout the industry, it helps everybody. Within the industry, removing gene patents ushered in the era of next generation sequencing and more comprehensive gene panel testing with higher diagnostic yield. This comprehensive testing directly affects the ability for health care providers and genetic counselors to advise their patients, especially when it comes to BRCA1, BRCA2 and other genes responsible for hereditary cancer. Fast forward to today, and we continue to innovate and improve our testing capabilities with the addition of RNA analysis. We are always looking forward into the future to see how we can improve diagnostic testing and ultimately help more patients."
Read more from those involved in the case by clicking on their names below:
Dr. Harry Ostrer and Professor Dan Traficonte
Ellen Matloff, MS, CGC
CEO, My Gene Counsel
Dr. Arupa Ganguly, Ph.D.
Professor of Genetics and Director of the Genetic Diagnostic Laboratory
University of Pennsylvania
Patient Testimonies
Runi Limary gave her testimony as a patient ten years ago in the court case regarding BRCA1 and BRCA2. Read more about her insights into why we need to #KeepGenesFree on our blog. Click here.
Ben Huebsch shared his BRCA patient story with insights on Men's Health Week and the SCOTUS decision. Read more here.
Webinar Replay
If you missed the live broadcast of “A Landmark Ruling: Celebrating 10 Years of Gene Freedom from Patenting,” you can view it here.
Sources
To learn more about the SCOTUS decision and to view some of the sources we used in our research, please visit the following sites and articles:
Robert Cook-Deegan and Annie Niehaus. “After Myriad: Genetic Testing in the Wake of Recent Supreme Court Decisions about Gene Patents.” Curr Genet Med Rep. 2014; 2(4): 223–241. Published online 2014 Sep 11. doi: 10.1007/s40142-014-0055-5
Adam Liptak. “Justices, 9-0, Bar Patenting Human Genes.” New York Times. 13 June, 2013.
Turna Ray. “In Gene Patent Ruling, SCOTUS Draws Line Between Product of Nature and Invention.” Genome Web. 20 June 2013.
“Ambry Genetics Prevails in Preliminary Injunction Motion Filed by Myriad Genetics.” 10 March 2014. Press Release.
Special thanks to the ACLU website for their clear and comprehensive coverage of the case:
The Fight to Take Back our Genes. ACLU. https://www.aclu.org/issues/privacy-technology/medical-and-genetic-privacy/fight-take-back-our-genes
BRCA-Plaintiff Statements. ACLU. https://www.aclu.org/documents/brca-plaintiff-statements#limary 12 May, 2009.
University of Utah v Ambry Genetics. UCLA Court Cases. https://www.aclu.org/cases/university-utah-v-ambry-genetics#legal-documents 29 September, 2014.
___
The views expressed by speakers or other third parties in this webinar and these discussions, videos, and/or events are those of the speaker or third-party and not necessarily of Ambry Genetics Corporation or its parent company, subsidiaries, or affiliates.
