Most teenagers don't sit around contemplating the need for genetic testing. They may not even know the purpose of genetic testing. That all changed for me when I was 13, shortly after my baby brother celebrated his first birthday. He was diagnosed with a disease called (SMA), a genetic motor neuron disease that affects the muscles that control crawling, walking, head and neck control, and swallowing. In order to inherit SMA, both parents of a child have to be carriers of a mutated SMN1 gene. If both parents are carriers, their child has a one in four chance of being affected with SMA. While my sister and I are perfectly healthy, there is a chance that we could both be carriers of the mutated SMN1 gene. My brother's doctors have strongly advised that, should we choose to have children, our partners should at least be tested to see if they are carriers for the gene. It was the first time the concept of genetic testing came across my radar, but it certainly wouldn't be the last.
A few years later, my paternal grandmother was diagnosed with stage-four ovarian cancer. While she lived longer than most patients in that advanced stage, it was heart-wrenching to watch her suffer. I couldn't help but wonder what her chances would have been if they had only diagnosed her sooner. When I learned it was hereditary and that her mother had suffered from ovarian cancer as well, it frightened me even more. It was around this time that I learned of BRCA1 and BRCA2 testing, the genetic tests that can determine a woman's chance of ovarian and breast cancer (the cancer that has plagued the other side of my dad's family). Both of my dad's sisters were encouraged to have these tests done, which seemed like the obvious solution given the high probability they could have cancer one day too. Unfortunately, as a result of the gene patents, there is only one lab that can do the testing and the tests cost too much.
What does it mean when a gene is patented, exactly? It means that a genetic sequence that occurs naturally in the human body is essentially controlled by a private company. Anybody who wants to use the gene in tests, studies or other applications can face a patent infringement lawsuit. In fact, it turns out that nearly 20 percent of human genes are patented, including the BCRA1, BCRA2, SMN1, and many other genes. This leads to expensive testing, as the companies with the patents can hold the sole right to test for the mutations in these genes. For those with inadequate insurance, like my aunts, or no insurance at all, it virtually denies them any access to this potentially life-saving tool.
For me, genetic testing means a lot. It turns out the SMN1 gene is patented and . And while I know a lot about my medical history on my dad's side, my mom is adopted. That means an entire half of my medical history — including any hereditary disease to which I may be susceptible — is unknown. Those tests would give me the opportunity to help fill in the blanks, so that I can make better medical decisions for myself and my family.
Unfortunately, many gene patents limit access to these vital tests, which is why I'm standing with the ACLU to take back my genes. Stand with me by sharing your own story and clicking here to learn more about the ACLU's case on gene patenting.
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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.