By Lisbeth Ceriani, ACLU BRCA Plaintiff at 11:08am
When I was diagnosed with breast cancer, patent law was the last thing on my mind. Then again, I didn’t know that one company could have an exclusive right to the genetic information that could save my life.
I’ve always been a very healthy and active person. I am a vegetarian, never smoked and I confined the cocktails to the weekends. When I turned 40 I had my first mammogram. I followed the rules.
Just after turning 41, I began experiencing occasional pain in my breasts. It felt like I was being struck with pins from the inside. I had a second mammogram and an ultrasound, which were both clean. The doctors sent me home assuring me that “cancer isn’t painful.” I wasn’t convinced, but I trusted they must know best.
By the following winter, the pain increased. Instead of a pin-prick, it felt like a pinch. I examined myself and found there was definitely something there – something round and hard.
I was diagnosed with bilateral stage IIA breast cancer in May of 2008 at age 42. It had been just 14 months since my last mammogram. As I had multiple tumors in both breasts, I underwent a double mastectomy followed by both chemotherapy and radiation.
Based on my relatively young age, the pathology of the tumors and the speed of growth, it was suggested that I might have a genetic mutation. Two genetic counselors and my oncologist all agreed that I should have what is known as a BRAC Analysis Rearrangement Test (BART), a BRCA genetic test performed by a company called Myriad Genetics.
A mutation in either BRCA gene significantly increases the risk of developing ovarian cancer, especially in women who have already been diagnosed with breast cancer. Unfortunately, there are currently no effective methods of screening for ovarian cancer. I was advised that if I carried a mutation in either of the BRCA1 or BRCA2 genes, I should undergo surgery to remove my ovaries. BRCA genetic testing was essential to determining my best course of treatment.
Myriad is the only lab in the country that performs BRCA genetic testing, not because other labs lack the expertise to conduct testing, but because Myriad holds patents on the BRCA genes. Although my health insurance documented that it will cover the test, Myriad has chosen not to accept my insurance. Since I could not afford the nearly $4,000 cost of the test myself, I was left without the information I needed to make an informed decision about my medical care.
The consequences of gene patents are serious for all of us. Understanding our genetic risk can mean life or death. It can mean the difference between whether a woman will live to raise her children. No woman should have to go without this test, or be prevented from getting a second opinion, because a corporation claims to own a piece of her DNA.
This is why I joined with the American Civil Liberties Union, the Public Patent Foundation, other patients, geneticists and medical professionals to challenge Myriad’s patents on the genes in court. It’s absurd to think that a corporation controls a part of my body, and can stop other scientists from offering a more affordable or different test, or from even looking at my own DNA.
Last year, a divided federal appeals court overturned a lower court that had voided Myriad’s patents. The U.S. Supreme Court vacated that decision and sent the case back for re-consideration after ruling in a similar case that patents cannot be issued on natural processes.
A year and a half after Myriad refused to accept my insurance; I was finally able to get the test through a grant. I learned that I do in fact have a rare mutation, and was able to take the steps necessary to protect my health. But many women are not so lucky. As long as Myriad holds a monopoly on the BRCA genes, there will be more women unable to get the information they need to make the best decisions for their health.
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Press ReleaseDec 2024
Free Speech
National Security
ACLU and Partners Urge Supreme Court to Block TikTok BanACLU and Partners Urge Supreme Court to Block TikTok Ban
WASHINGTON — Today, the American Civil Liberties Union, the Electronic Frontier Foundation (EFF), and the Knight First Amendment Institute at Columbia University filed an amicus brief urging the Supreme Court to block the enforcement of a law that would effectively ban people in America from using TikTok as soon as January 19, 2025. Earlier this month, the U.S. Court of Appeals for the D.C. Circuit rejected TikTok’s challenge to the law. TikTok has asked the Supreme Court for a temporary injunction to prevent the app from being banned while the court considers whether to take the case, saying that unless the justices intervene, the law will “shutter one of America’s most popular speech platforms the day before a presidential inauguration.” “The Constitution imposes an extraordinarily high bar on this kind of mass censorship,”said Patrick Toomey, deputy director of ACLU’s National Security Project. “The Supreme Court should take up this important case and protect the rights of millions of Americans to freely express themselves and engage with others around the world.” The brief argues that the D.C. Circuit failed to fully address the law’s profound implications for the First Amendment rights of the 170 million Americans who use TikTok. While the lower court’s decision correctly recognized that the statute triggers First Amendment scrutiny, it barely addressed users’ First Amendment interests in speaking, sharing, and receiving information on the platform. The court also perplexingly attempted to cast the government’s ban on TikTok as a vindication of users’ First Amendment rights, which it is not. The rights groups also explain that the law was intended to suppress certain content and viewpoints that many legislators believe could be amplified on TikTok, including the risk of foreign “propaganda.” But under the First Amendment, the government must meet a very high bar to restrict speech based on concerns about its “motivating ideology” or “perspective,” and the government has not come close to meeting that bar here. “The government should not be able to restrict speech, especially to the extent here, based on guessing about the mere possibility of uncertain future harm,” said David Greene, civil liberties director at EFF. “The Supreme Court should put the TikTok ban on hold while it considers the DC Circuit’s erroneous ruling.” Finally, the brief underscores that the government can’t impose this type of sweeping ban unless it’s necessary to prevent extremely serious and imminent harm to national security. But the government has not provided evidence of impending harm, or evidence that banning TikTok is the only available way to address its concerns. As the brief explains, the D.C. Circuit improperly treated the government’s invocation of “national security” as a trump card and failed to hold the government to its burden. “Restricting citizens’ access to foreign media is a practice that has long been associated with repressive regimes, and we should be very wary of letting the practice take root here,” said Jameel Jaffer, executive director at the Knight First Amendment Institute at Columbia University. “It would do lasting damage to the First Amendment and our democracy if the Supreme Court let this ban go into effect even temporarily.” You can find the brief online here: https://www.supremecourt.gov/DocketPDF/24/24A587/335380/20241217144322392_24A587%20TikTok%20v%20Garland%20Amicus%20Brief%20pdfa.pdf -
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Free Speech
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Minnesota Supreme CourtNov 2024
Free Speech
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