Over the last few years, states across the country have advanced a record number of bills attacking LGBTQ rights and targeting transgender youth in particular. In addition to restricting access to gender-affirming care, state lawmakers and school boards nationwide are trying to prevent trans students from participating in school activities like sports, censoring in-school discussions of LGBTQ people and issues, and preventing trans students from having an inclusive and safe learning environment.

Through advocacy, litigation, and lobbying, we’re working alongside our partners to push back against these discriminatory policies and all out attacks on transgender youth. Here, three advocates discuss their experience working alongside the ACLU and community partners to fight back against a school board policy that discriminates against transgender students in Hanover County, Virginia, and why we must keep showing up to defend trans rights.

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These interviews have been edited and condensed for clarity.

“My child came out four years ago as transgender. And Hanover County has not been such a great place to raise a transgender child.

“It doesn’t take much to convince our loving family that loving your kid is the path. I think what turned on the activist in me is realizing how my son was being treated in school, and it just isn’t okay.

“As soon as the school year started, every school district in Virginia was supposed to adopt model policies that would protect transgender kids at the schools, and Hanover did not. The school board and their policies provide a real barrier for our child to be included at school. Our child wasn’t allowed to use the appropriate restroom. It’s been difficult to get him referred to by the appropriate name. People often think that the only issue trans kids have in school is restrooms, and that is just the most visible one. There’s lots of other things to attend to to make a trans kid’s day at school as dignified as possible — names, pronouns, activities, gendered activities, gendered instruction, even dress codes that are gendered. All of that stuff impacts trans kids.

“The school board was explicitly resisting the law that was requiring them to support trans kids. So we contacted the ACLU of Virginia and told our story. And we knew we needed to be speaking up and showing up at the school board meetings.

“One of the first school board meetings I went to, I was sitting in the audience and looking around the room and wondering how many of these people are in support of trans kids. There were about 15 speakers that day. I was the only person who spoke about our experience of having a trans kid in the school.

“Making our story public to the community has inspired a lot of other community members with similar stories to come forward and do the same thing. It’s been a domino effect in the community and has exploded into a movement in Hanover of people who are supporting trans kids. More and more people are showing up to school board meetings and telling their stories, trans students are showing up and telling their stories. Allies, our kids, best friends, parents are all showing up.

“I would love to see Hanover County and every other school district adopt model policies that are supportive of trans kids. My son asked ‘Mom, am I really worth this?’ And I was stunned. My response was, ‘Of course, you are worth this. All of the trans kids in Hanover are worth this.’”

“I came out at 13 years old when I was still living in Dallas, Texas. At the time, I didn’t have a family or school that really supported who I am and provided me with an environment that had my best interests in mind. I experienced a lot of harassment, discrimination, and stigma, and so I think that is what spurred my interest in advocacy and led me to the path where I am now in my role at the ACLU.

“In Virginia, we passed a law that requires all 131 public schools to adopt model policies on the treatment of transgender youth. These model policies help create school environments that are safe, inclusive, and affirming of trans and nonbinary students. They were crafted by parents, trans youth and students, and other stakeholders. Unfortunately, Hanover County school board decided not to adopt these comprehensive model policies. Instead, they chose to adopt a patchwork of policies that, for example, did not allow trans youth to access bathrooms consistent with their gender identity.

“We had five families in Hanover reach out to us and ask us to intervene to fight for their children’s legal rights. And so the ACLU of Virginia entered into litigation against Hanover County school board representing those five families. But we knew that litigation wasn’t enough to stem the tide of anti-trans policies, including those coming out of Hanover. The Commonwealth told school boards to respect trans students. Yet, some school boards decided meeting their legal and moral obligation to create safe school environments for all, including trans youth, was not a priority. We knew we needed to organize directly with trans youth, supportive parents, and allies. We knew we needed to provide training and strategize with community members, professional associations, and LGBTQ+ rights organizations on how best to oppose these horrendous, anti-trans policies.

“The ACLU of Virginia is working to build communities and pass policies at the school board level that create inclusive and affirming environments where people like me and kids today who are queer and trans don’t have to experience discrimination and harassment.

“The ACLU has a long history of fighting for LGBTQ rights, whether it’s marriage equality to schools, to now fights at a school board level. We have always shown up to fight for our basic rights and dignity.”

“Right now, one of our biggest battles is fighting in Hanover for our transgender students. Our students spend most of their day in our schools. It has to be a safe place for them, but right now we do not feel that it is.

“Our kids say, “I am transgender. I simply want to be treated like anyone else.” My grandson, Kaiden, has said to me, “Why don’t they just leave them alone? We don’t have a problem with transgender kids. Why do they?” He’s 15 and has more wisdom than our school board.

“Our transgender kids just want to be accepted for who they are in our schools and they want to be treated equally in our schools like everyone else. But the school board isn’t making this possible. The school board says you must use the bathroom of your “birth status,” but the kids want to be able to use a bathroom that identifies with their current gender and with who they are.

“Our fight is to make sure that they have the same rights as anyone else attending school. We have to attend school board meetings. We have to pull together marches and protest and letter writing campaigns for our trans kids.

“We are blessed to have many parents who are supportive of their kids. We have worked with Equality Virginia, the ACLU, and the Jewish Community Federation on this issue because working together is what we find works in Hanover County. I love the fact that we as a people are coming together, working with an intersectionality of everybody coming together. One group fighting alone is not the answer because we’re all really fighting for the same things — the equity and equality of all people.”

Should companies be able to patent human genes? For decades, the U.S. Patent and Trademark Office said yes, ultimately granting patents on thousands of genes.

Two of the genes that were patented are BRCA1 and BRCA2. The patent office approved exclusive rights over the genes because Myriad Genetics was the first to “isolate” them, or remove them from the body and cell. The patents on the genes allowed Myriad to exercise a monopoly on the genes in the United States, shutting down other labs from offering testing or second opinions and increasing the price to thousands of dollars per test.

The ACLU opposes patenting that would authorize private entities to control access to something as fundamental to humanity as our genes. In 2009, we filed a lawsuit on behalf of 20 researchers, genetic counselors, women patients, cancer survivors, breast cancer and women’s health groups, and scientific associations representing 150,000 geneticists, pathologists, and laboratory professionals. The landmark case argued that human genes are products of nature, even when “isolated,” drawing on 150 years of legal precedent forbidding patents on laws of nature, natural phenomena, and abstract ideas. The Supreme Court agreed. It invalidated the patents, in a unanimous decision written by Justice Clarence Thomas on June 13, 2013.

For Lisbeth Ceriani, a breast cancer survivor and plaintiff in our suit, the Supreme Court’s ruling was not only a source of great joy, but also a step towards a more equitable health care system. During Ceriani’s breast cancer diagnosis, she was informed that the BRCA genetic test she needed was inaccessible because the gene associated with her cancer, and the test, was under patent.

“It’s not just some abstract scientific concept, it impacts people’s daily lives, people’s mothers and sisters and wives. [It impacts] their health care decision,” Ceriani told the ACLU in 2017. “It’s a basic human right to see your own blood, your own genes.

Ten years later, Myriad has now acknowledged the Supreme Court got it right. In a remarkable statement, it said: “[W]e applaud the incredible innovation in genomics and precision medicine that has occurred since the Court reached the decision limiting patents with respect to naturally occurring DNA. Myriad does not support patents on products of nature, including naturally occurring DNA and unmodified human genes.”

Despite this consensus, our right to our own genetic information is at risk. For several years, a number of Congressmembers have supported legislation to restore patenting of laws of nature and abstract ideas, including human genes, and have made clear they will push this issue in the future. If passed, this legislation would overturn decades of Supreme Court precedent and would tear down some of the public’s only protections from the worst patent abuses.

To help understand the devastating consequences that human gene patents could have on all of us, we spoke to four people who led the fight against human gene patenting:

• Lisa Schlager, the vice president of public policy at Facing Our Risk of Cancer Empowered (FORCE), a national patient advocacy group that filed an amicus brief in support of our case.
• Karen Weck, a professor of pathology and genetics at University of North Carolina at Chapel Hill and former president of the Association for Molecular Pathology, which was the lead organization plaintiff in the litigation.
• Robert Nussbaum, a geneticist who served as an expert in the lawsuit while he was a professor at University of California San Francisco and is now Chief Medical Officer at Invitae, a genetic testing company.

Together, they share how the fight against human gene patenting has affected their health and their work. This conversation has been condensed for clarity.

ACLU: Let’s go back to the beginning. When did you first encounter the BRCA genes?

SCHLAGER: In 1999, my paternal aunt was diagnosed with breast cancer at the age of 49. She reached out to share that she had undergone genetic testing through a study they were doing to explore the prevalence of BRCA mutations in patients and their families of Ashkenazi/Eastern European descent. My aunt had tested positive for a BRCA1 mutation, and the researchers indicated they would like to test family members. I was the next oldest female in the family, and underwent counseling and testing. Three months later, my husband and I met again with the genetic counselor and learned that I too, carry a BRCA1 mutation.

NUSSBAUM: I first became aware when breast-cancer research pioneer Mary-Claire King announced the existence, although not the identity of, the BRCA1 gene in 1990. King later helped lead the fight against patenting the gene to make access to testing easier and more accurate. It remains unknown how many families may have received false negative results and subsequently, missed opportunities to diagnose their cancer early or prevent it altogether.

ACLU: What was your initial reaction when you heard that genes were being patented?

NUSSBAUM: When I heard Myriad was patenting BRCA genes, I thought that this was a single company making a big money grab based on research done by numerous other researchers, and that [what Myriad was trying to do] would require the patenting of a natural product and shouldn’t be patent-eligible. Gene patenting would be the worst thing that could happen, and would stifle innovation in the genetics and genomics testing space.

WECK: I was lucky to work at an institution that had negotiated with Myriad so that we could offer BRCA testing to women without insurance who could not afford their test. However, as someone who has been involved with molecular genetic testing for over 20 years, I experienced firsthand the inability to develop and offer clinical genetic testing for many genes that had been patented.

SCHLAGER: The BRCA gene patents resulted in exorbitant costs for testing, making it inaccessible to many people. The patents also hindered broader multigene panel testing where the BRCA genes could be combined with other mutations known to increase cancer risk such as ATM and PALB2. As with many access issues, this most affected underserved and underrepresented populations, creating greater health disparities.

ACLU: When the ACLU first brought a case against patenting these genes, why did you want to be involved?

SCHLAGER: As an organization representing people with or at risk of hereditary cancers, the patent case resonated with FORCE. At the time, all our staff were BRCA mutation carriers, as were most of our constituents. We saw the effects of gene patents on our community firsthand and wanted to support the effort.

ACLU: In your opinion or experience, what are the consequences of gene patents? Who does this harm?

WECK: The incredible advances we have seen in molecular diagnostics since the Myriad ruling clearly demonstrate the limiting effect gene patents once had on the field. In 2021, there were over 160,000 clinically orderable genetic tests offered in the U.S. which likely would not be the case if gene patents were still enforced.

For many years, gene patents prevented the scientific community from working together to develop novel diagnostics and treatments for rare and common diseases, including cancer, muscular dystrophy, Alzheimer’s disease, and heart disease. It is important that we learn from those missteps and ensure that the freedom to innovate remains in place.

ACLU: Why is it important to you that we all have fair access to genetic material?

NUSSBAUM: Making it illegal to patent genes expands the genetic testing market, enables competition, and improves laboratory practices for genetic testing through standardizing next-generation-sequencing methods, variant classification, reporting, and counseling, plus acceleration of novel disease gene discoveries and better understanding of gene-disease relationships. Today, improved access to genetic testing is reducing health care inequity through more genetic testing in historically underserved populations and, consequently, better understanding of their genetic information.

WECK: The laboratory community’s response to the COVID-19 pandemic provides a recent example of how the Myriad decision led to rapid and robust innovation in a very short time period. The RNA sequence of SARS-CoV-2 was posted publicly and immediately diagnostic developers throughout the world began validating and launching tests. According to the Government Accountability Office, from February 2020 to December 2021, the FDA received nearly 3,400 Emergency Use Authorization requests, an average of 150 per month! Had someone patented the genomic sequence of SARS-CoV-2, we could have had as few as a single test, and perhaps even available from only one laboratory, which by no means would have met the testing capacity needs over the past three years.

In 2015, following a DUI arrest, Ian Mitcham consented to having a blood sample collected to test for blood-alcohol concentration. He was advised his sample would be destroyed after 90 days. Instead, law enforcement held onto it for three years. Then, without obtaining a warrant, a detective used this old blood sample for a completely different purpose — to extract and analyze Mr. Mitcham’s DNA while investigating another crime.

As we’re arguing before the Arizona Court of Appeals tomorrow, and set forth in a friend-of-the-court brief, this clearly violated Mr. Mitcham’s constitutional rights under the Fourth Amendment. Despite this, the State makes a terrifying argument to justify its actions: that it has the power to obtain DNA profiles from any biological sample in its lawful possession, without court oversight or approval.

American Civil Liberties Union

State v. Mitcham | American Civil Liberties Union

The ACLU and the ACLU of Arizona are arguing that the government cannot genetically test any biological material it already has in its possession.

The consequences of this argument are chilling. Our DNA contains extremely personal and sensitive information, including information about our medical history, possible future health conditions, ancestry, and physical appearance. It can reveal those details not only about us, but also our family members, including future children. Combined with other public data, it can expose deeply private information — from previously unknown family histories of adoptions, misattributed paternity, risk of early mortality, or siblings we didn’t even know about. Given this, collecting and analyzing DNA constitutes a seizure and search under the Fourth Amendment. And the government must obtain a warrant before extracting it.

Yet in this case, the State claims that since Mr. Mitcham consented to provide a blood sample three years ago, it can ignore that requirement, even though he consented to the collection only for a blood-alcohol test, and the sample should have been destroyed after 90 days.

With this rationale, all of us who consent to a biological sample collection, at any point in time, for any purpose, to any government entity, may be subject to a warrantless DNA search after the fact.

This would be incredibly dangerous, considering all the contexts in which the government has lawful access to our biological material — from blood taken from newborns to screen for diseases, to organs donated for transplant, to specimens collected from survivors of sexual assault. If the State’s arguments are accepted, police could theoretically extract any person’s DNA from their biological material and create a genetic profile without a warrant.

American Civil Liberties Union

Widespread Newborn DNA Sequencing Will Worsen Risks to Genetic Privacy | ACLU

As newborn screening programs expand to include babies’ entire genomes, parents must be made aware of the privacy risks.

A number of federal government agencies collect our biological material for critical public health purposes. The National Institutes of Health collects blood, bodily fluids, tissues, and other biological materials to study the genetic and environmental factors associated with disease in order to develop new treatments. The Environmental Protection Agency collects biological samples from people living near contaminated sites or from populations that may be at higher risk of exposure to environmental pollutants to measure their exposure to contaminants. The Centers for Disease Control and Prevention collects biological samples, like blood for Ebola and nasal or throat swabs for COVID-19, to study changes to the virus and develop new treatments. It also collects blood from approximately 5,000 people each year “to assess the health and nutritional status of adults and children.”

In addition, the government collects — and people consent to the use of — biological materials for more individualized purposes, also distinct from investigating crimes. For example, some U.S. citizens and lawful permanent residents provide buccal swabs to verify their family relationships to people seeking to immigrate to the United States. People donate their biological material to help identify or locate missing family members. Olympic and Paralympic athletes submit biological samples, including blood, to the United States Anti-Doping Agency to test for prohibited substances.

In many instances, sample collection has targeted minority communities. For example, the city of Tulsa, Oklahoma hired scientists to collect DNA from Black people to identify relatives of individuals killed during the Tulsa race massacre. In Arizona, where this case is taking place, the Pima County Medical Examiner’s Office is currently working to collect DNA from Latin American individuals to help identify more than 1,200 human remains. Given this country’s history of systemic mistreatment, the risks posed by unfettered access to the genetic information of marginalized communities are unquestionable.

Without constitutional protection, there may be a greater risk of the government abusing these resources to generate and analyze genetic profiles as they please. Given how law enforcement acted in this case, and in other criminal investigations where they collect suspects’ DNA without their knowledge or consent from items they discard or throw away, this kind of abuse would not be surprising or far off. Moreover, if our privacy protections erode, so does public trust in these vital government programs. Without this trust, important medical and public health research will suffer.

Consent for the government to collect a biological sample for a particular purpose cannot authorize unfettered genetic testing for a criminal investigation. A warrant is required.