Photo Credit: CBS News

5-year BRCA SCOTUS Anniversary

Today, June 13th, 2018, marks the 5 year anniversary of the Supreme Court of the United States’ Association for Molecular Pathology v. Myriad Genetics case regarding the BRCA gene patent. The result was a unanimous decision, genes could not be patented as they occur naturally.

We reflected back on this day, how far we have come, and where we are going…..

Lead Attorney Sandra Park with plaintiff Lisbeth Ceriani

As a litigator, the oral argument at the Supreme Court will always be special for me — from the ceremony of walking to counsel’s table and taking in Justice Sotomayor’s warm smile, to quickly thinking of responses to the Justice’s questions and opposing counsel’s assertions.  But what struck me the most was not the legal argument itself.

It was incredibly meaningful to see, in one place, so many of the amazing people who joined together to support the lawsuit to end gene patents.  Several of our plaintiffs who had bravely brought the case were there, as were many leading figures from the genetics and cancer world.  Uniting such a diverse group of activists, clinicians, patients, government officials, researchers, and attorneys in this advocacy was one of the most powerful strategies we used, and one that I am most proud of to this day.

I was not expecting the decision to come out on June 13th, but was sitting at my desk, working on a brief while monitoring SCOTUSBlog just in case.  I was surprised when it was issued, and even more shocked — and overjoyed — that it was a unanimous 9-0 decision striking down gene patents.  The rest of the day was a mad rush of processing the opinion and its ramifications, spreading the word to our plaintiffs and supporters, and talking with the media.

The win at the Supreme Court lifted a major barrier to patients’ access to genetic testing, the development of new and more comprehensive tests, and genetic research.  If companies were still authorized to lock up individual genes for their own use, they would be able to dictate patients’ access to their own genetic information and researchers’ ability to study genes and their relationship to disease and possible therapies.  The Supreme Court’s decision was crucial to ensuring that monopolies on genes do not block patients’ decision-making for themselves and their families or the future course of genetic research.

Sandra Park
Lead Attorney

Photo Credit: Johns Hopkins

My most vivid memory from the day of going to SCOTUS is getting up early and walking about a mile to the Supreme Court Building. I replaced my line stander at 7 AM and was number 59 in line when 60 were let in.

I was at a meeting in Big Sky Montana when I heard the verdict. The most important thing the verdict had done for patients, research, and genetic testing is the elimination of the monopoly that Myriad had on testing. It stopped companies from patenting our genes.

Haig Kazazian, MD
Johns Hopkins

Photo Credit: UPenn

I cannot believe that it has already been 5 years since that famous verdict came out. I remember I was in my office and the first phone call I received was from a reporter in Philadelphia Inquirer who asked me how I felt? I just said I was very happy because women now had a choice. I also remember Haig called me and said he had a special interview planned so that he could issue a statement.

But the most memorable event for me was my trip to SCOTUS with Haig in April of 2013. It was definitely a “once in a lifetime” experience and I will never forget that. Especially getting the tickets for entering SCOTUS  – my ticket number was 22 and Haig’s was 59.

Things have changed so much since then – I am glad to have been a part of history.

Arupa Ganguly, PhD
Professor, Department of Genetics, SOM
Director, Genetic Diagnostic Laboratory
University of Pennsylvania

I have so many vivid memories from the day of going to SCOTUS!  On is sitting outside of the courtroom with Chris Hansen for the period just before he went in to argue the case, briefly reflecting on all that had come to pass to bring us to this day, and all the while marveling at how calm, cool, and collected Chris seemed as compared to me!  He was ready!

That, and grinning ear to ear when Justice Sotomayor said that isolated DNA was “just nature sitting there.”

I was sitting in a meeting at FDA when I heard the verdict.  My phone started buzzing like crazy and I knew it meant that the decision was in.  I glanced at the subject headings, jumped up and exclaimed, “We won!!!”, ran back to my office, downloaded the decision, and called Chris Hansen at his home to revel in the victory!

This verdict has given rise to a new business model for diagnostic testing – one focused on quality, affordability, and patient experience, rather than market dominance and data hoarding. Many more patients have access to testing, research is advancing more rapidly, and a single company can no longer dictate the standard of care.

Tania Simoncelli
Director of Policy for Science
Chan Zuckerberg Initiative

My whole family showed up in support of the SCOTUS rally.  It was a family affair! After a really difficult year and recovering from surgeries, I felt like having the chance to speak in public as an advocate on that historic day was incredibly empowering.  It helped me to move forward from some of the loss that I had experienced due to BRCA.

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I was at home with my husband when I heard the verdict. Everyone started texting and calling me. I was so happy and excited!!!

Before the verdict, I believe that Chris Mason had paper estimating roughly 41% of the human genome had been claimed by patents. It’s amazing to think that this case was an important step to open up research on BRCA and other genes. I also think it
was the first time we began to recognize how strong and powerful the voices of advocates in the BRCA Community can be. I awakened to the possibility that the BRCA community is part of something bigger as genetic testing and ‘personalized medicine’ continues to evolve, and it’s important for us to be informed and educated about these issues as consumers. We will continue to need a unified voice as advocates to ensure that various industries are not overlooking the best interest of the BRCA Community.

Andrea Downing
Founder, Brave Bosom
Patient Advocate

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On June 13th, the Ovarian Cancer Project, the small non-profit I founded in the Fall of 2012, was participating in a huge corporate health fair. Despite the noise, I heard my phone ringing and answered it. It was a producer from NPR asking for an interview later that morning. Robyn Shepard (ACLU) had told me the week before that NPR (Boston) would be calling me at some point. I explained to the producer that I was really busy, and maybe we could schedule the interview for some other time.  The person on the other end of the phone seemed a bit perplexed, thanked me and hung up.

A bit later, I checked my cell phone.  A text from Mollie Hutton, my genetic counselor read; “you won”.  Immediately my phone rang again. This time it was Rich Wolf from USA Today wanting my reaction to the decision.  The next call was from our local Buffalo News health reporter, he was a bit snotty with me, as he never agreed with our position, and had an interview with a local law firm that came solidly down on the side of patents. These phone calls were like gold that day.  No one locally really understood the impact of the case.

I think access to low-cost testing made the most powerful and important impact in healthcare in recent history. Sadly, for me…the one thing that I was most frightened of, and the thing that drove me to want to be a part of the case was that women who had been tested by Myriad and thought, like our family, that we were given the most comprehensive test, now thought they were safe from a cancer diagnosis. These families still haven’t’ been contacted to receive the most current testing available.

Kathleen Maxian
President/Founder of Ovarian Cancer Project
Patient Advocate

My most vivid memory from the day of going to SCOTUS was hearing the Justices talking about genes and genetics by using analogies of chocolate chip cookie recipes and a branch falling off of a tree and floating down a river until it formed into a baseball bat. It made me realize how little even the Justices knew about genetics!

I had just attended my daughter’s preschool graduation when I heard the verdict. We ran to the car in a total downpour and were soaking wet.  My phone was in the car and was blowing up with texts and voicemails. My friend Debbie’s text read simply, “You won!!!”  I started bawling.

The most important thing the verdict has done for patients, research and genetic testing has been making genetic testing better and more affordable for more people.

Ellen Matloff, MS, CGC
CEO/President of My Gene Counsel
Genetic Counselor

Curious about changes since this landmark SCOTUS ruling? Check out our other blog post on the current and upcoming changes in the genomics world.