This post is part of , held this week to commemorate the anniversaries of the 1920 passage of the 19th Amendment and the 1963 March on Washington.
When you hear about patents on human genes, women's rights might not immediately come to mind. Yet, a woman's right to access medical care, make informed medical decisions, and benefit from scientific research is at the core of this issue.
For the past two decades, the United States Patent Office has granted patents on human genes once they are "isolated," or removed, from the body and cell. BRCA1 and BRCA2, which are associated with hereditary breast and ovarian cancer, are just two of the estimated 20 percent of human genes that have been patented. Women and men who have certain mutations on these genes in their lifetimes. For that reason, physicians and genetic counselors recommend genetic testing for some patients with a significant family or personal history of breast or ovarian cancers, so that they can more fully understand their risk of developing future cancers and to help inform medical decisions.
However, because a company called Myriad Genetics controls the patents on the BRCA1 and BRCA2 genes, there is only one laboratory in the United States that provides BRCA sequencing — Myriad's. The human cost of patents on genes has the potential to be devastating for women and their families.
Myriad's patents enable it to threaten other laboratories that offer testing. Its monopoly has barred patients from accessing or comprehensive second opinions about their results. It also allows Myriad to charge a high price for its tests, . Furthermore, Myriad's refusal to share the data it has collected on BRCA1 and BRCA2 mutations raises serious questions about whether it is undermining research and scientific progress.
The American Civil Liberties Union and Public Patent Foundation filed a lawsuit challenging these patents on behalf of pathologists, geneticists, women's health organizations and patients. Our lawsuit challenges the government's policy of gene patenting, and its outcome could have far-reaching effects on other patents that have been issued, including on genes relating to ovarian cancer, Alzheimer's disease, and muscular dystrophy.
Myriad's patents are invalid because they cover natural phenomena, which the Supreme Court long has shielded from patenting. The federal district court agreed, and in a landmark ruling concluded, for the first time, that genes are not patentable subject matter because they are products of nature. On appeal, a divided Federal Circuit partially reversed the district court's ruling, holding that companies can obtain patents on the genes but cannot patent the basic process of comparing genetic sequences.
This decision is extremely . By allowing companies to block access to alternate tests and second opinions, charge thousands of dollars for their tests, and chill scientific research, gene patents are threatening women's – and all patients' – rights.
No corporation should be able to claim ownership of a woman's own genetic information. We are considering next steps in the litigation, but to learn more about what you can do, click here.
Learn more about gene patents: Sign up for breaking news alerts, , and .
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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 -
MississippiJul 2024
Free Speech
Privacy & Technology
NetChoice v. FitchNetChoice v. Fitch
Whether a law that mandates age verification for all users of social media services violates the First Amendment. -
News & CommentaryDec 2024
Free Speech
Can you define pornography? Neither can the government.Can you define pornography? Neither can the government.
We break down the absurd-but-true history of trying to censor sexual speech under the guise of "keeping kids safe." -
Minnesota Supreme CourtNov 2024
Free Speech
Energy Transfer LP v. Greenpeace International, Unicorn RiotEnergy Transfer LP v. Greenpeace International, Unicorn Riot
This case in the Minnesota Supreme Court asks whether the MFFIA's protections apply to newsgatherers even if they are alleged to have engaged in trespassing while newsgathering. The ACLU’s State Supreme Court Initiative, alongside the ACLU of Minnesota and law firm Biersdorf & Associations, filed a brief representing Unicorn Riot, a media organization that covered protests of the Dakota Access Pipeline. The brief argues that MFFIA and constitutional reporter’s privileges, under both the U.S. and Minnesota constitutions, protect Unicorn Riot from having to comply with Energy Transfer’s subpoenas.