The ACLU has taken on a patent case for the first time in its nearly 90-year history. The government's been allowing private companies to patent human genes. The ACLU thinks that violates the First Amendment and patent law. This is heady, complicated stuff. But when a patent creates a monopoly that restricts the free flow of information, a lot is at stake, and when we're talking about something like genes associated with breast and ovarian cancer, real women are hurt. This video about the case features some of those women's stories.
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"How can it be that a company controls genes? How is that possible?" Barbara Brenner asks in the video. She's the director of Breast Cancer Action and one of the plaintiffs in the lawsuit.
We hope this short video will inform and inspire. It provides a simple explanation and overview of the issues in our case against the U.S. Patent and Trademark Office, which granted Myriad Genetics patents on the BRCA1 and BRCA2 genes, the genes associated with breast and ovarian cancer. The video also features the women directly affected by the patents. They represent any number of mothers and daughters you may know facing the same obstacles as three of the plaintiffs in our case, Genae Girard, Lisbeth Cerianai, and Runi Limary.
The results from Myriad's genetic test are a strong factor in women's decision to have children. Breast cancer survivor Genae Girard, 39, took Myriad's genetic test to determine if she's at risk for ovarian cancer. Her test results showed that she's at a high risk for the cancer, and should have her ovaries removed. Because only Myriad holds the patents on the genes associated with breast and ovarian cancer, no one else can offer this genetic test without its permission. Therefore Girard can't get a second test, or a second opinion, on whether to have her ovaries removed.
Lisbeth Ceriani, a single mom, simply can't afford the more than $3,000 test. Getting the test paid for by insurance can be difficult.
"I'd like to see my 8-year-old daughter go to college," Ceriani says. "But if I have the mutation, there's a huge chance I'll end up with ovarian cancer in the immediate future. I need to have that test so I can get my ovaries out if I need to before anything happens. I don't like those odds." Myriad's monopoly on the genes, and therefore the genetic test, prevents other companies from offering this potentially life-saving test at a lesser cost to patients.
Dr. Wendy Chung, Director of Clinical Genetics at Columbia University and another plaintiff in the case, says she too often sees women like Girard and Runi Limary who can't seek second opinions and are given little data to understand what their tests results mean because of the patents.
Limary had breast cancer at 28 and took Myriad's test to find out if it was likely to return and if ovarian cancer is a concern. The result was puzzling: Limary was told she had a genetic variant of "uncertain significance." It turns out other Asian-American women like Limary had also received these results. But because patent-holder Myriad has not determined the variant's significance, and other companies are excluded from offering the test, these women are left to guess whether their variants warrant removal of their ovaries along with their ability to have children.
Tania Simoncelli, ACLU science advisor, says a lot is at stake if companies like Myriad are allowed to own genes and have a monopoly on everything associated with those genes.
"They own not only the gene, they own any future tests, any future drug, any future therapy, so we're putting our trust in one single company," says Simoncelli. "There are places where the patent system has gone too far. Too much patent protection can in fact trample our civil liberties."
Please share this video far and wide and let others know why it is important that we stop the government from allowing companies like Myriad to own our genes.
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Press ReleaseDec 2024
Smart Justice
ACLU Celebrates President Biden’s Clemency Announcement, Allowing Hundreds to Remain in Their CommunitiesACLU Celebrates President Biden’s Clemency Announcement, Allowing Hundreds to Remain in Their Communities
WASHINGTON – President Biden heeded the calls of advocates and families today by granting commutations to close to 1,500 people who were released to home confinement at the height of the COVID-19 pandemic under the CARES Act and pardons to 39 additional people, including many veterans and women. The CARES Act, passed in 2020 in response to the COVID-19 pandemic, allowed certain groups of people to serve part of their sentences at home to mitigate the dangers of COVID-19 in federal prisons. Since then, thousands of people have been allowed to serve part of their sentences at home, securing jobs, reconnecting with loved ones, and reintegrating into their communities. The American Civil Liberties Union advocated for the CARES Act and has been urging President Biden to provide clemency to CARES Act release recipients since 2021, launching a six-figure ad buy, engaging grassroots supporters, filing FOIA litigation, and more. “We are thrilled that President Biden has allowed people to remain with their families and communities, where they belong, said Cynthia W. Roseberry, director of policy and government affairs at the ACLU’s Justice Division. “The CARES Act was an unprecedented experiment in decarceration, and the data tells us it was incredibly successful. Of the over 13,000 people released, more than 99 percent have safely and successfully reintegrated into their communities. We urge Congress to build on the remarkable success of the CARES Act and pass other decarceration policies that prioritize compassion, redemption, and public safety.” “President Biden’s actions today also remind us of the incredible and unique power of executive clemency,” Roseberry continued. “The ACLU has long advocated for the categorical use of clemency to address unjust outcomes of the criminal legal system. While today’s announcement is wonderful, there is more to do in the final weeks before President Biden leaves office. We strongly urge President Biden to use his power to address this country's failed death penalty by commuting death row sentences.” According to data the ACLU obtained this year through FOIA litigation, the vast majority (71.8 percent) of those on home confinement had less than one year remaining in their sentence. Almost a quarter (23.5 percent) of CARES Act clemency recipients are older than 61 and over half (59.4 percent) are people of color. “Biden's announcement today means I can finally breathe a sigh of relief after 3.5 years of living with the fear of being sent back to prison for no reason,” said Won Lee, released on CARES Act home confinement in May 2021. “The second chance I got through the CARES Act allowed me to take care of my aging parents, restart my career, pursue a graduate degree, and receive treatment for the cancer I was diagnosed with shortly after returning home. Today's decision means I will no longer have to live with the uncertainty and fear that I will be unjustly uprooted from my life and family, who now depend on me. I am incredibly grateful and thrilled to sleep soundly tonight knowing I'll remain at home.” Learn more about the ACLU’s campaign to commute death row here: /campaigns-initiatives/president-biden-commute-the-row -
Press ReleaseSep 2024
Criminal Law Reform
+2 Issues
Judge Orders Supervision System in Washington, D.C. to Accommodate People with DisabilitiesJudge Orders Supervision System in Washington, D.C. to Accommodate People with Disabilities
WASHINGTON – A federal court granted a preliminary injunction yesterday in a case filed on behalf of people with disabilities on parole and supervised release in Washington, D.C., ordering immediate action to address discriminatory conditions faced by the two named plaintiffs. The court also denied the government’s motion to dismiss, allowing the case to proceed. The case, brought by the American Civil Liberties Union, ACLU of D.C., Public Defender Service for the District of Columbia, and Latham & Watkins LLP, challenges the federal government’s post-conviction supervision system in Washington, D.C. for systematically ignoring the needs of people with disabilities, thereby setting them up for failure on supervision and putting them at constant risk of sanctions, including incarceration. As the court held in its decision, such accommodations are likely required under federal disability law, specifically the Rehabilitation Act of 1973. The preliminary injunction requires that the United States Parole Commission and the Court Services and Offender Supervision Agency (CSOSA), the two federal agencies responsible for supervision in D.C., assess what reasonable accommodations the two named plaintiffs require to have an equal opportunity to succeed on supervision, and provide all such required accommodations. “Absent an injunction,” the court’s decision reads, “the Parolees will be forced to participate in the Government’s supervision programs on an unequal footing just because of their disabilities.” People on supervision in D.C. are required to comply with myriad and onerous rules. For people with disabilities, navigating these complex conditions is even more challenging. For example, Plaintiff Mr. Mathis — a 70-year-old military veteran with congestive heart failure that limits his ability to walk — struggles to travel throughout the city to attend frequent supervision meetings that often conflict with necessary medical procedures and hospitalizations. His supervision officer required him to wear an ankle monitor even after his doctor warned the monitor would jeopardize his health due to his heart condition. Plaintiff Mr. Davis, who lives with chronic pain stemming from third-degree burns as well as mental health conditions, also faces disability-related barriers getting to required meetings. Yet failing to meet any of these conditions, even something as simple as missing an appointment, can land a person back in jail or prison, even when no new criminal conduct is alleged. The court agreed that “absent immediate relief, the Parolees will face irreparable harm; namely, obstacles to success on supervision solely because of their disabilities, which expose them to downstream harms like revocation and reincarceration.” The court did not decide whether it will ultimately certify a class that could yield relief for all people on supervision in D.C. who need accommodations. Instead, the court directed the parties to agree on a schedule for further proceedings on that issue. “The undue hardships faced by people with disabilities on federal criminal supervision in the District of Columbia have gone unaddressed for too long,” said Scott Michelman, legal director, ACLU of the District of Columbia. “This decision is a victory for equal treatment and common sense.” “The Court’s opinion emphatically rejects the federal government's ‘do-nothing’ policy for people with disabilities on supervision in Washington, D.C., who have been forced to navigate onerous requirements without accommodations for decades,” said Allison Frankel, staff attorney with the ACLU Criminal Law Reform Project. “This ruling ensures that our named Plaintiffs will have the accommodations they need to have a fair shot at completing parole and remaining in their communities.“ “We are thrilled the Court recognized that the Parole Commission and CSOSA must accommodate our clients’ disabilities so that they have an equal opportunity to succeed on supervision,” said Zoé Friedland, staff attorney with the Public Defender Service for the District of Columbia. “We will keep fighting to make this relief permanent and systemic so that all people on supervision have an equal chance to succeed.” The decision on the preliminary injunction can be found here: /cases/mathis-v-united-states-parole-commission?document=Preliminary-Injunction-Opinion The complaint can be found here: /documents/w-mathis-v-united-states-parole-commission-complaint -
Press ReleaseJul 2024
Smart Justice
Just City And Legal Advocates Challenge Tennessee’s Unprecedented Bail LawJust City And Legal Advocates Challenge Tennessee’s Unprecedented Bail Law
MEMPHIS, Tenn. — Today, the American Civil Liberties Union (ACLU) Criminal Law Reform Project, ACLU of Tennessee, and Simpson Thacher & Bartlett LLP filed a lawsuit on behalf of Just City Memphis to challenge the constitutionality of Tennessee’s unprecedented new bail law, arguing that the law violates the Fourteenth Amendment by mandating unfair bail hearing procedures and discriminatory wealth-based detention. The law makes Tennessee the only state in the country to prohibit judges from considering whether people appearing before them will be able to pay for release. The new law, which went into effect on May 1, targeted successful bail reforms that Shelby County implemented following an agreement with the ACLU, ACLU of Tennessee, Just City, and other local advocates. The agreement required the examination of a person’s financial circumstances prior to any bail decision; individualized bail hearings with counsel no later than three days after a person’s arrest; and imposition of secured money bail only as a last resort. As a result, more people returned home to their communities while at the same time lowering the number of people rearrested for new crimes. By rolling back these reforms, the Tennessee legislature has created a two-tiered system of justice, leaving those who cannot afford to pay detained indefinitely, even if they are not a flight or safety risk. Meanwhile, those who face the same charges but can afford to pay money bail are freed until trial. “Bail reform works, and it was working in Shelby County. More Tennesseans were returning home to live peacefully in their communities,” said Trisha Trigilio, senior staff attorney for the ACLU. “This shameful legislation targets low-income and marginalized Tennesseans for pointless jail time. We will not allow Tennessee lawmakers to end successful bail reform for political gain.” "Our Constitution demands that judges make individualized determinations about pretrial release," said Josh Spickler, executive director at Just City. "This law prevents judges from doing that crucial work and results in the unnecessary detention of people who pose no risk to public safety because they can't afford to pay an arbitrary bail amount. That's not how our justice system is supposed to work." “We don't have to choose between safety and justice; we can have both if we maintain a bail system that is evidence-based, fair, and constitutional.” said Stella Yarbrough, legal director at the ACLU of Tennessee. “Everyone has a basic right to freedom, and this new law contradicts decades of constitutional precedent. Freedom for the wealthy and punishment for poor people of all races violates the Constitution and disproportionately impacts Black people and people with disabilities, while doing nothing to address the systemic causes of crime—like poverty and lack of opportunity.” Simpson Thacher & Bartlett LLP Litigation Partner Craig Waldman added, “Tennessee’s law banning judges from considering an individual’s ability to pay bail is unfair and unconstitutional. The right to due process guaranteed under the Fourteenth Amendment is a bedrock of our justice system.” Just City is an organization dedicated to fighting discrimination based on race, ethnicity, and income in Shelby County criminal proceedings, and has long advocated for pretrial practices that prioritize fair and sensible release decisions over a person’s ability to pay. Their lawsuit asks the court to declare that this new bail law violates the Fourteenth Amendment and requests a preliminary injunction that would prohibit the Shelby County Sheriff from enforcing this law. -
Press ReleaseJul 2024
Reproductive Freedom
+2 Issues
Court Rejects Attempt to Dismiss Case Seeking Accountability for Wrongful Prosecution of AbortionCourt Rejects Attempt to Dismiss Case Seeking Accountability for Wrongful Prosecution of Abortion
McALLEN, Texas – A federal judge ruled today that a lawsuit seeking accountability for the unlawful investigation and prosecution of Lizelle Gonzalez can proceed, rejecting attempts by Starr County officials to have the case dismissed. Gonzalez, represented by Garza Martinez, the American Civil Liberties Union, and the ACLU of Texas was unlawfully arrested, jailed, and charged with murder after a medication abortion she had in 2022. The Starr County district attorney, assistant district attorney, and sheriff pursued and then obtained an unlawful indictment against Gonzalez even though they knew that Texas law clearly prohibits the criminal prosecution of pregnant women for conduct that ends their pregnancy. “When I first heard Lizelle’s story, I was outraged at the behavior of our elected officials,” said Cecilia Garza, attorney at Garza Martinez. “The court’s decision today to allow this case to proceed gives me hope that courts will not allow these types of egregious acts to continue. Law enforcement need to be held accountable to the laws that they took an oath to uphold.” In the motions to dismiss, the prosecutors and sheriff raised claims of legal immunity, a doctrine that they argue should insulate them from being held accountable for violating Gonzalez’s constitutional rights. The court denied their motions to dismiss, allowing Gonzalez’s case to proceed to the first stage of discovery concerning whether law enforcement can be held liable for violating her rights. “Immunity doctrine creates a culture in police departments and prosecutor offices where public officials may feel empowered to violate people’s rights, knowing they will face few – if any – consequences,” said Lauren Johnson, director of the ACLU’s Abortion Criminal Defense Initiative. “While immunity often obstructs victims of misconduct from attaining accountability, the court’s decision today to allow the case to proceed will give Lizelle a chance to pursue the justice she deserves for being unlawfully targeted and prosecuted.” “Texas is one of the most restrictive states in the country when it comes to abortion health care, but even in Texas, the laws are uniform and clear that pregnant women cannot be criminally liable for having an abortion,” said David Donatti, senior staff attorney for the ACLU of Texas. “We expect and demand that our elected officials follow the rule of law, and that is especially true for officials elected to enforce the laws with so much power over our daily lives and personal decisions.”