by Karuna Jaggar, Executive Director

Our modest display of materials doesn’t stand out among the sea of plush and glossy booths at the San Antonio Breast Cancer Symposium, enticing folks with fancy displays and tantalizing give-aways. It’s the people at our table who draw folks in to the Breast Cancer Action booth. And nearly everyone we talk to—from patient advocates to doctors from other countries and even industry employees—thank us for the work we do and tell us they agree with our perspective on key issues.

On Friday, I left our booth in the capable hands of Jayla, our program officer, and Samantha, a volunteer. I was horrified to learn that while I was in one of the research sessions, these two smart, professional, young women of color were publicly and berated at our own SABCS booth by a pair of white men in expensive suits representing Myriad Genetics, Inc. 

Before Jayla and Samantha could even greet them, Myriad’s Executive Vice President of Corporate Communications, Ronald Rogers, slammed his briefcase on the table and started haranguing them, accusing our organization of “tarnishing Myriad’s image.” His raised voice got the attention of nearby attendees. Calling our materials “bullshit,” Rogers snatched up all of our flyers describing an attempt by Congress to amend the Patent Act and allow gene patents, and threatened to remove them from our booth. The printouts encourage members to contact their Representative and Senators to tell them companies should not be allowed to patent our genes. Over the next ten minutes, Myriad’s executives berated Jayla and Samantha, calling our materials “propaganda,” and “fake news.” Apparently this unprovoked attack was a response to the fact that some of Myriad’s partners have questioned the company’s stand on the issue.

Myriad, Gene Patents, and the Supreme Court

If you don’t know Myriad Genetics already, here’s a little background on the multibillion dollar corporation, and our history with them.  

In the mid-1990s, Myriad Genetics was granted patents on the BRCA 1 & 2 genes, which are associated with increased risk of breast and some other cancers. Instead of advancing research and medicine, gene patents allow holders to block studying, testing, or even looking at the patented gene. Breast Cancer Action’s early founders spoke out against gene patents. But having been granted exclusive rights, Myriad introduced the first genetic test for breast cancer risk in 1996, which has generated more than $2 billion for the company.

It was not technological innovation or a superior product that allowed Myriad to make exorbitant profits; it was simply the result of the monopoly their patent gave them. Myriad knew this and aggressively policed their patents, despite the fact that newer technologies could make BRCA testing cheaper, easier, and better.

In 2009, Breast Cancer Action became the only breast cancer organization that was a plaintiff in an historic ACLU-litigated lawsuit representing researchers, genetic counselors, and patients in challenging Myriad’s gene patents. The reason the ACLU originally decided to file suit challenging Myriad Genetics’ patent on the human BRCA 1 & 2 genes—new territory for the civil liberties watchdog—is because of the way Myriad used their patent to block medical and scientific progress. And in June 2013 the Supreme Court of the United States (SCOTUS) ruled unanimously that companies cannot patent genes.

One of the things that made Myriad stand out among companies that held patents on human genes was their aggressive intimidation and heavy-handed pursuit of their patent claims. A 2010 article published in Nature, titled “Myriad Genetics: In the eye of the policy storm,” explains that Myriad’s bullying tactics are well-known and long-standing: “Newspaper editorials, pundits, and professional health organizations competed in criticizing Myriad and what they viewed as its bullying tactics.”[1]

Even after the SCOTUS ruling, Myriad has continued to mount legal and PR attacks on other companies who want to offer BRCA testing. The company pursued an aggressive legal strategy for a year and a half after the SCOTUS ruling to stop smaller companies from offering BRCA testing to assess for increased risk of breast cancer. And as recently as 2016, a STAT article[2] noted that, with falling revenue, Myriad went on the offensive to attack rival companies, making unwarranted claims that these other tests weren’t as good as Myriad’s.

The bigger problem is that Myriad has been hoarding vast amounts of biodata accumulated as a result of BRCAnalysis testing for over 15 years, putting their ongoing profits before medical and research advancement for public good.

Booth Bullies

So it rang untrue when the Myriad Executive Vice President who confronted Jayla claimed that partners are pulling out of business deals because of Breast Cancer Action. Myriad doesn’t need us to “tarnish their reputation.” They’ve done an excellent job on their own.

Despite being shaken by the unprovoked attack, Jayla and Samantha handled themselves professionally, asking Rogers and his colleague for their business cards, so that I, as the organization’s executive director, could follow up personally. But both men claimed not to have a business card on hand—which must make their networking at a professional conference a little tricky. And they declined to write down their contact information for me. Even though Jayla gave them my business card, I have yet to hear from them myself.

They had no intention of a serious conversation about the issue. This was nothing more than an impulsive and self-indulgent attack on our staff and volunteer by Myriad’s VP of Corporate Communications, who apparently gets off on attacking and harassing young women.

Bullying starts at the top. Throughout his tirade, Myriad Executive VP Ronald Rogers repeatedly noted that he reports directly to the CEO. He certainly proved he is just the man to carry on the company’s reputation.

We can’t trust companies to do the right thing, which is why it’s so important that companies can’t patent human genes. Congressional attempts to amend the Patent Act could move forward at any time. Contact your legislator now.

Note: This article, originally published on December 18th, was revised slightly in style, not substance.