How U.S. Muslims Have Transformed in the 20 Years Since 9/11—and What It Means in the Wake of 10/7
Eman Abdelhadi January 18, 2024
A woman wearing a keffiyeh as a hijab looks ahead.
University of Chicago graduate student Safia Mahjebin looks on from a campus courtyard on Nov. 29, 2023. PHOTO BY PAUL GOYETTE
To read this story in Arabic (العربية), click here.
Zeynab Muhammad, a Palestinian college student in Illinois in her early twenties, has been changing her routine since Israel began its assault on Gaza.
She no longer goes to the library to study or roams campus to hang out with friends. She says it’s tough to complete schoolwork or get other tasks done. Fearing physical violence, she spends most of her time in her apartment.
“I’m constantly on edge,” she says about being on campus. “I feel like, when people look at me, all that comes to mind are the negative stereotypes associated with Arabs and Muslims. My name and actual character is irrelevant.”
Two years ago, when Muhammad (who asked to use a pseudonym because she fears attacks) first started wearing the hijab, she noticed her heart beating faster every time she crossed the street. She had always “walked on eggshells” in her predominantly white neighborhood, but when she became more visibly, traditionally Muslim, her fears escalated. Women who wear the hijab often face discrimination, hate speech and assault.
“If a car was coming by, I’d just be very afraid that it was about to accelerate,” she says. “I’d always been trying to convince myself, ‘No, that’s not the way it is. Calm down. People don’t hate your guts.’”
“Like the car attack, [the shooting] just confirmed my fears,” she says. “I feel extra vulnerable since I’m a woman, visibly Muslim and petite.” She has since stopped wearing the keffiyeh off campus because “the risk is too high.”
Her fears were validated in early November 2023 after Abdulwahab Omira, an Arab Muslim student at Stanford University, was reportedly struck and injured in a hit-and-run. The driver yelled out, “Fuck you and your people.”
Muhammad has recently been wearing a keffiyeh along with her hijab, something she says she wears “proudly” but worries may serve as “an extra black-and-white target on my back.” Physical and verbal attacks on those wearing keffiyehs have become increasingly common, not just in the United States but around the world. Just three days after I first spoke with Muhammad, three Palestinian students wearing keffiyehs and speaking Arabic were shot by a white man in Burlington, Vt.
“Like the car attack, [the shooting] just confirmed my fears,” she says. “I feel extra vulnerable since I’m a woman, visibly Muslim and petite.” She has since stopped wearing the keffiyeh off campus because “the risk is too high.”
“On campus, I’ll wear it, but I’m constantly checking behind my shoulder and have to wear a mask since doxxing has been a significant threat,” she says. “I don’t feel safe on the quad.”
After October 7, verbal and physical assaults against Muslims in the United States have risen to levels not seen since 9/11. Censorship of pro-Palestinian views has also skyrocketed, and many are afraid not just for their physical safety but also their livelihoods.
The decades since 9/11 have been transformative for American Muslim communities in ways that are, in turn, shaping their responses to current domestic hostilities and the assault on Gaza. The wars on Iraq and Afghanistan and the global War on Terror — with its attendant domestic policies of surveillance — catapulted U.S. Muslims into antiwar activism, Democratic Party politics and a renewed effort at coalition-building, all of which expanded after the election of former President Donald Trump and his Muslim ban.
Many Muslims who came of age experiencing Islamophobia and anti-Muslim sentiment also grew up fighting for, among other issues, Black lives, climate justice and gun control. These experiences are now deeply informing their understanding of the genocide in Gaza. Rather than framing Palestine as a Muslim issue, they see it as a star in a constellation of anti-colonial, racial justice struggles against global white supremacy and the violence of American empire. A persisting question, however, is whether their fight for the soul of the United States is worth enduring the nightmare.
“UNPRECEDENTED” FOR ALL THE WRONG REASONS
Ahmed Rehab, executive director of the Chicago chapter of the Council on American-Islamic Relations (CAIR), says the past couple months have been the “busiest period” of his nearly two decades of activism combating hate crimes. “We’ve seen a 700% increase in cases from October 7 to November 7, compared to the month before,” Rehab says. Since November 7, 2023, CAIR-Chicago has received about 1,000 calls and added an additional 100 cases.
Hate crimes across the nation have been wide-ranging, from discrimination to bullying to murder. In Illinois alone, among other incidents just in October, CAIR-Chicago reports Muslim women harassed at a Walmart; a suburban mother hit with eggs; a family threatened at a Burger King; a professor who went on an Islamophobic tirade in front of students; doctors with Palestinian heritage denied referrals; employers who retaliated against workers who spoke up for human rights; a suburban man who assaulted two Muslim men and threatened to kill them while remarking “this is America.”
In another Chicago suburb, six-year-old Wadea Al-Fayoume was killed and his mother injured by their 71-year-old white landlord, a devoted listener of conservative talk radio who became obsessed with the violence in Israel and Palestine. He screamed, “You Muslims have to die.” Al-Fayoume was stabbed 26 times.
A group of people stand on a wooden floor. In the middle, a small boy is holding a banner with the Palestinian flag that reads, "I AM NOT A THREAT!"
Community members attend a vigil in Plainfield, Ill., after the stabbing death of Palestinian American Wadea Al-Fayoume, 6, on Oct. 17, 2023. The attacker was reportedly motivated by hatred for the family’s Muslim faith. PHOTO BY SCOTT OLSON/GETTY IMAGES
This environment of anti-Palestinian racism, anti-Arab racism and Islamophobia, combined with what Rehab calls “an unprecedented level of censorship,” have made this moment an isolating time for American Muslims. Many describe limiting their interactions only to other Muslims or to their own families.
Zeeshan Anwar, a Pakistani American tech worker at a small Illinois company, says there has been an eerie silence at work. He was somewhat relieved his firm did not take a stance in support of Israel, as bigger tech companies like Google and Microsoft did. “You can call it lucky or unlucky,” he says. He says Muslim friends elsewhere have been harassed on Slack at work, but “we don’t really talk about it at work.” One of his superiors brought the issue up indirectly, saying he “wanted to make sure that everyone is okay.” Unsure of the stance of his co-workers, Anwar chose to mostly stay silent despite being constantly preoccupied.
Anwar and Muhammad, like many Muslim Americans, have been glued to the images and news of rising death tolls and destruction in Gaza. Silence from their peers makes work and school feel like a surreal parallel universe where life carries on as normal.
The silence does not foster safety for Muslims and advocates for Palestinian human rights.
On campus, Muhammad says she feels “invisible.”
“I’m just seeing people go about their lives without the fear of their entire identity being erased, without a worry of their entire ethnic heritage being subjected to genocide and ethnic cleansing,” she says. “Even if you try to tell people about these things with loud, massive quad demonstrations, they’ll just walk past without a second glance, laughing, talking.”
Alimah Adebayo (also a pseudonym), a Nigerian American college student in Chicago, says her mostly non-Muslim friend circle has also been silent. One of her close friends is Jewish; when the friend visited Israel this past summer, they had discussed his trip. Since October 7, Adebayo feels her friend is tiptoeing around the issue, echoing the broader atmosphere on campus.
“I was sitting in my religion class, and we were hearing the protests,” Adebayo says. “The way that my classmates reacted, it made me very uncomfortable. It just felt like they were trying to shut everything off.” Adebayo acknowledges the conflict is not religious, but says she was dismayed no one would discuss it. “We are in religion class, and I think this is a good place to bring that up. And I’m a political science student, and I think there’s been a lot of missed opportunities.”
The silence does not foster safety for Muslims and advocates for Palestinian human rights. Leili Darvishi (also a pseudonym), an Iranian American who works at an Illinois university, says she had several conversations with her supervisor about promotions within her department long before October 7. She has kept her pro-Palestine views quiet at work and sought to keep her social media private, especially because her university has issued pro-Israel statements and roughly half of her department’s faculty are Jewish Israelis. Shortly after the genocide began, her supervisor pulled her aside to let her know he did not think upward mobility would be possible.
Sign up for our weekend newsletter
A weekly digest of our best coverage
Email Address
“If I want to grow,” Darvishi says, “I have to basically leave the department or maybe the institution.” Darvishi adds: “I don’t know if it was in my head, or maybe it was just a coincidence. I think maybe it was 50-50.”
While hate crimes are clear in motive and intent by definition, countless incidents of discrimination and harassment (like those described by Darvishi, Adebayo and Anwar) are ambiguous enough to leave Muslims wondering whether what they are encountering is coincidental, or just awkward, or politically, racially or religiously motivated. These tensions and chilling effects are an indelible mark of the post-October 7 world.
Franc Nikolla, who lives in an Illinois apartment with his wife and 8-month-old son, has a “Brandon Johnson for Mayor” sign hanging from the balcony. Recently, an older man stood outside yelling obscenities. Among them: “You guys support Brandon Johnson! You guys support Palestine!” Nikolla was left feeling unsure whether the man was reacting to his support for Chicago’s newly elected progressive mayor or whether he’d seen Nikolla and his Pakistani wife walking around the neighborhood. Perhaps, Nikolla thought, it was both.
As a precaution, some Muslims have tried to reduce their visibility. Farzana Ali, an immigrant from India, usually wears a kurta shalwar and a dupattā to attend Friday prayers, but she has stopped. “I’m afraid to wear a headscarf, because [people’s] eyes were turning around in their heads, turning around when I rode a bus or was in public space,” after the assault on Gaza began, she says. “I no longer wear a headscarf even in Jumu’ah [Friday prayer]. I took it off. I’m scared.”
FROM 9/11 TO 10/7
For many millennial Muslims, this renewed fear and hostility reminds them of their post-9/11 childhoods. It has evoked reactions from resignation to defiance, but hardly ever surprise. Kinza Khan, a Chicago-based lawyer, remained calm when a stranger started filming her and her friends, called them terrorists and told them to go back to their countries. The man promised to make sure they “never worked again.”
“I didn’t feel that ‘amygdala-hijack fight-or-flight response,’ ” Khan says. “I was very much like, ‘OK, I’ve heard this before,’ it didn’t faze me … it felt familiar, because I grew up with hearing people call me a terrorist after 9/11.”
A white man next to Khan, whom she did not know, happened to be taking down an Israeli propaganda poster featuring hostages taken by Palestinian militants. As Yale professor Greg Grandin wrote in The Intercept, the posters have been seen as a “call for war” by issuing the following message: “We want you to share our outrage against Hamas’s atrocities, but the pain and right of retribution, unlimited, belongs to Israel alone.” People filmed taking these posters down have faced national campaigns of doxxing, harassment and intimidation. New York University even suspended a first-year student and revoked her scholarship for removing one of these posters on campus.
Soon after the incident, Khan woke up to hundreds of messages on her phone, social media and email. The video had been posted online, and the messages called her a terrorist, an antisemite and a rape sympathizer. Harassers approached her boss and the board of trustees of the nonprofit that employs her — an organization that serves victims of gender-based violence — and called the dean at the law school where she is an adjunct professor, and flooded the school’s social media with messages. A Muslim nonprofit where Khan does consulting work received hundreds of harassing messages asserting that their affiliation with her made them a terrorist organization.
Muslims need to build power across different platforms including media, cultural work, grassroots organizing and electoral politics. These strategies can both counter Islamophobia and help Muslims intervene on issues they see as politically salient, like Palestine.
“I was 11 when 9/11 happened,” Khan says. “I was attacked in middle school on the school bus.” She says that “even though I was a U.S. citizen, born and raised in Chicago, I felt like I was not accepted, like I didn’t belong in Chicago. I don’t remember a life without Islamophobia.”
Safia Mahjebin, now a graduate student at the University of Chicago, was in first grade in her native New York City during 9/11. Like many Muslim families, they were soon targeted by immigration enforcement.
“[Immigration and Customs Enforcement] came to our home around fajr [sunrise] time,” Mahjebin recalls. “All these officers came into our home and took my dad away. They didn’t tell us why they were taking him, where they were taking him, no information.” The experience left a lasting impression. “The fact that we were children, and they were taking away our father — that didn’t seem to faze [the agents] at all,” she says.
Mahjebin’s father would not return for weeks, an incident he has never since talked about. After her mother came home that day, she gathered Safia’s uncles. One thought it must have been because Mahjebin’s father kept a beard — a sign he was a devout Muslim. Another wondered whether it was because he keeps the books for the largest Muslim Bangladeshi organization in the United States.
A woman wearing headphones holds a camera, filming a building with banners that read, "U of C $$$ KILLS" and "DIVEST FROM GENOCIDE."
Safia Mahjebin documents a banner drop at the University of Chicago’s William Eckhardt Research Center on Dec. 8, 2023. Similar actions from student groups have led to bans on college campuses. PHOTO BY PAUL GOYETTE
“It was clear to me, even as a middle-schooler,” Mahjebin says. “My family thought being Muslim was criminal in the U.S, and the state powers that be don’t see us as full citizens and as full humans.”
Mahjebin went to school a few hours later as though nothing had happened, not even bothering to tell her friends — because it would have been, distressingly, too mundane. “All of us were coming from immigrant families, and the reasons for why we came to the United States in the first place was because of some kind of horrific thing that happened in our countries of origin,” she says. “The American values that they talk about are not for us. We’re always in a state of exception. … We understood that these experiences, there was no space to hold them.”
Even at a young age, Mahjebin understood that Muslims’ marginalization in the United States was an extension of U.S. foreign policy. Mahjebin, Darvishi and Khan — none of whom are Palestinian — all mention their early awareness and awakening around Palestine occurred alongside their awareness of the War on Terror and the U.S. assaults on Iraq and Afghanistan.
“Seeing the way that my Black peers were treated, and the struggles that they had to go through,” Mahjebin says, “I understood America is different for white people and it’s different for Black people. And then you see this intersection of not just Muslim global suffering but also Black suffering and Native suffering.”
Mahjebin’s family attended antiwar protests for as long as she could remember. “[We were] showing our resistance to the American war machine that was destroying Iraq and Afghanistan,” she says. “And in between there was a lot of South Asian politics, like India’s belligerence towards Bangladesh. There was a lot of activism around that. And then, from time to time, we would go to Palestine protests.”
Mahjebin eventually saw Palestine as not just a geopolitical issue embedded in American empire but as a reflection of domestic politics. “We learned about the Native American genocide and we learned about Black enslavement and the Jim Crow era, and we became more conscious,” she says.
At her majority-Black high school, there were only white students in the gifted program. The white students lived in affluent areas while many of her Black classmates lived in public housing. She, like many non-Black Muslims and other Black Americans, made the connection.
“Seeing the way that my Black peers were treated, and the struggles that they had to go through,” Mahjebin says, “I understood America is different for white people and it’s different for Black people. And then you see this intersection of not just Muslim global suffering but also Black suffering and Native suffering.”
Later, Mahjebin would actively participate in the Black Lives Matter movement along with many of her Muslim peers.
Muhammad also notes the connection between Palestine and Black and Native struggle. “What’s happening in Palestine is very similar to what happened to Native Americans in the U.S. 300 years ago,” Muhammad says. “And the apartheid struggle is not too different from apartheid South Africa, and the Black struggle within the U.S. — the way that Black and brown communities in the U.S. are treated so poorly.”
TWO DECADES OF COALITION-BUILDING
Saher Selod, a sociologist at Simmons University who studies Muslim Americans’ experiences with surveillance, says this generation’s approach to Palestine has been fundamentally shaped by the coalitions built over the past two decades. “Compared to when I interviewed people in 2008 and 2009 about 9/11, this generation is very different,” she says. “They’ve gone through Black Lives Matter, climate justice, immigration justice, gun control.” Selod recounts how the Muslim Justice League, an organization founded to counter surveillance of Muslim communities in the Boston area, began working on other forms of policing, work that affected not just Muslim but also Black and immigrant communities. Eventually they worked with other local groups to oppose the building of a police complex called the Boston Regional Intelligence Center (BRIC), which would better facilitate surveillance efforts across state agencies, the police and the FBI.
In 2016, after the police murder of Philando Castile and Alton Sterling, educator and organizer Zellie Imani co-founded Black Lives Matter Paterson in New Jersey. Paterson is home to one of the largest Palestinian communities in the United States.
“We shouldn’t wait for a Black person to be killed, or videos of a Palestinian child being pulled out from rubble, for us to collaborate with one another.”
For Imani, the issue of Palestine has always been clear.
“My parents were Black student activists in the ’70s,” Imani says. “My parents grew up not only fighting apartheid in South Africa but apartheid in Palestine as well.” His parents taught him about the oppression of Palestinians and about Islamophobia, and he notes that “the Black radical tradition has a long history of solidarity with the people of Palestine, from Malcolm X to the Black Panther Party.”
Imani says there has been mutual solidarity and activism between the Palestinian and Black communities and their movements in Paterson. “For the 2020 uprisings, Palestinians showed up,” he says, crediting the local and national efforts to build solidarity between communities. “After the uprising, in the Palestinian American Community Center, we started a free food fridge in Paterson.” Imani says the fridge goes toward the goal of a long-term, stable partnership that would outlast moments of crisis: “We shouldn’t wait for a Black person to be killed, or videos of a Palestinian child being pulled out from rubble, for us to collaborate with one another.”
Since October 7, Imani and BLM Paterson have been active in anti-genocide organizing, much like many Black organizations across the country. “We have always been there, front and center, to show solidarity with them,” Imani says. “We’re not only just showing up, we’re also a part of the organizing process.”
Hadeil Abdelfattah, a lifelong Palestinian Chicagoan, says the composition of pro-Palestine protests has changed with the assault on Gaza. “The awareness and the support that Palestinians are getting is unprecedented,” she says. “If you’ve ever been to [a protest] — or even seen pictures of who is out there, who’s protesting — it is no longer a Palestinian majority.
Illinois State Rep. Nabeela Syed told attendees at the annual CAIR-Chicago banquet that she felt anxious about speaking on Palestine — until she attended a rally of 20,000 people in Chicago. “We are not alone,” she said. “I was with my mother in Chicago yesterday marching down the street with people of all different backgrounds.”
There has also been a distinct push for unity within the Muslim community. “I do think that it united a lot of us,” Kinza Khan says, crediting community support with helping her withstand the harrowing experience of being doxxed. Franc Nikolla describes Palestine protests as “reunions,” saying that, despite the circumstances, it has been good to reconnect with others.
A man with stands with his arms crossed in front of a colorful mural where there's dogs, hummingbirds, butterflies, and flowers.
Franc Nikolla, seen here on a walk near his Chicago home on Nov. 29, 2023, isn’t sure whether he’s being harassed for his progressive politics, or the fact that his wife is Pakistani. PHOTO BY PAUL GOYETTE
On the political level, Ahmed Rehab says this moment has been a “wake-up call.” Prior to these events, “there had been a palpable shift in the Muslim community toward Republicans on the pure basis of the gender-ideology debates,” he says. Indeed, an anti-LGBTQ letter, written and signed by prominent American Muslim scholars, sparked enormous controversy in 2023 when it declared homosexuality Islamically unacceptable, lamented queer education in public schools and called on politicians to “protect our constitutional right to practice our religious beliefs freely.” (Many prominent Muslims vehemently opposed the letter, and a Pew Research Center survey suggests only about a third of American Muslims think homosexuality should be discouraged by society.)
“Now, I think there’s a realization that it just takes one event, takes one incident, takes one situation— God forbid a terrorist attack or even something like this — to just show that [Islamophobia] was always just latent,” Rehab says. He adds that Muslims need to build power across different platforms, including media, cultural work, grassroots organizing and electoral politics, to counter Islamophobia and help Muslims intervene on realities they see as politically salient, like Palestine.
Still, the path forward appears unclear. Where Muslims once placed their bets on a place in the Democratic Party, many are deeply disillusioned with electoral politics, the Democratic establishment and — in particular — President Joe Biden. “This has put a dent in the likelihood of Muslims to identify as Democrats without question,” Rehab says. He does not think Muslims are largely shifting toward voting Republican, but that their allegiance to the Democratic Party should no longer be taken for granted.
RELATED TO GAZA
On Parenthood and Genocide
A new mother and scholar of forced displacement writes about Israel's mass murder of Palestinian children in Gaza.
Heba Gowayed
Comics Against Genocide
A man wearing glasses stands in front of a table full of rifles. He is surrounded by men, including some police officers.
Every Jew a .22 and MZ-4: The Path from Kahane to Ben-Gvir
The rise of far-right extremism in Israel is a long time coming, and it has deep roots in settler violence against Palestinians.
Natasha Roth-Rowland
“There’s a lot of commotion in the community, and a lot of people ready and waiting for the elections to punish those Democrats who betrayed Muslim votes,” Rehab says. “That’s going to be critical in a lot of races, including the presidential one.”
Indeed, many Muslims and Arabs have been cutting ties with Biden. A group of Muslims in several swing states even launched an anti-Biden campaign. As Saqib Bhatti argues in In These Times, Muslims never saw Democrats as particularly pro-Muslim, critiquing their weak stance on Islamophobia domestically and drone warfare during the Obama administration. The “lesser of two evils” argument is holding less sway. “You’re allowed to be a single-issue voter,” Bhatti writes, “if the issue is genocide.”
Students like Zeynab Muhammad say they feel like Biden’s feeble attempts to address Islamophobia are a transparent platitude. “Recently, after October 7, [Biden] rolled out an anti-Islamophobia program, which is great,” Muhammad says. “But, buddy, we see right through that.” The program, which was announced by Vice President Kamala Harris and emerged after criticism of the administration, has been critiqued as hypocritical. Biden is “very much losing the Muslim vote, the Arab vote, the Gen Z vote, and trying to salvage it in ways that don’t actually get at what we actually want,” Muhammad says. Muslims and pro-Palestinian activists have consistently pushed the administration to call for a cease-fire and have condemned its rhetorical and material support for Israel.
A PLACE FOR MUSLIMS?
As American Muslims juggle grief, isolation and strategy, more recent Muslim immigrants are reconsidering their place in this country altogether.
Magdy Abdelrahman (also a pseudonym), a 20-year-old Egyptian college student, arrived in Chicago in late September 2023 for one year of study in the prestigious Sawiris Scholars program at the University of Chicago. In his application essay, he wrote about wanting to experience life in a multicultural society. A couple of weeks after he arrived, the war in Gaza began.
Abdelrahman started attending campus protests to advocate for a cease-fire and university divestment from Israel.
"I’m not so sure I want to stay here,” he says. “If I do apply, [and] if I’m accepted … to have people around me think of me as a terrorist—I can’t accept that.”
“I was so shocked to be at a rally and have someone shout at me, ‘You support terrorism, you’re a terrorist, you’re a killer,’” Abdelrahman says. “I thought, ‘Me? How could you say that about me?’” Abdelrahman had never experienced anything similar. “It was shocking.”
Most Egyptian students who are Sawiris Scholars apply to transfer into UChicago at the end of their one-year scholarship program. Abdelrahman says his fellow Egyptian classmates have been split. They all believe that being vocal about Palestine threatens their chances of staying. Some remain quiet while others attend vigils and protests.
Abdelrahman knows completing his education in the United States would open doors, and he moved here planning to apply to transfer. But “after what happened, I’m not so sure I want to stay here,” he says, adding that he’s no longer sure he will even apply. “If I do apply, [and] if I’m accepted … to have people around me think of me as a terrorist — I can’t accept that.”
Abdelrahman’s experience is not an anomaly. Farzana Ali, who has been in Illinois for five years as a staff scientist, says working in the United States has improved her skill set and advanced her career. “I have received several awards,” she says. “My professional achievements have reached a different level. But if you really ask me personally, ‘What do you think of the U.S.?’
“I’d say, ‘It’s probably not a place for Muslims.’”
Please consider supporting our work.
I hope you found this article important. Before you leave, I want to ask you to consider supporting our work with a year-end donation. In These Times needs readers like you to help sustain our mission. We don’t depend on—or want—corporate advertising or deep-pocketed billionaires to fund our journalism. We’re supported by you, the reader, so we can focus on covering the issues that matter most to the progressive movement without fear or compromise. With the 2024 election looming, the fearless and independent reporting you can expect from In These Times is needed more than ever, but we can’t do it without you.
Our work isn’t hidden behind a paywall because of people like you who support our journalism. We want to keep it that way. If you value the work we do and the movements we cover, please consider donating to our year-end fundraising campaign. We need your help to raise $150,000 to fund our reporting in 2024.
Thank you for reading and supporting In These Times. If you value our work, please consider supporting our essential reporting with a year-end donation.
Alex Han, Executive Director
Donate Now
Eman is smiling at the camera.
Eman Abdelhadi is an academic, activist and writer who thinks at the intersection of gender, sexuality, religion and politics. She is an assistant professor and sociologist at the University of Chicago, where she researches American Muslim communities. She is co-author of Everything for Everyone: An Oral History of the New York Commune, 2052 – 2072.
23andMe is not doing well. Its stock is on the verge of being delisted. It shut down its in-house drug-development unit last month, only the latest in several rounds of layoffs. Last week, the entire board of directors quit, save for Anne Wojcicki, a co-founder and the company’s CEO. Amid this downward spiral, Wojcicki has said she’ll consider selling 23andMe—which means the DNA of 23andMe’s 15 million customers would be up for sale, too.
23andMe’s trove of genetic data might be its most valuable asset. For about two decades now, since human-genome analysis became quick and common, the A’s, C’s, G’s, and T’s of DNA have allowed long-lost relatives to connect, revealed family secrets, and helped police catch serial killers. Some people’s genomes contain clues to what’s making them sick, or even, occasionally, how their disease should be treated. For most of us, though, consumer tests don’t have much to offer beyond a snapshot of our ancestors’ roots and confirmation of the traits we already know about. (Yes, 23andMe, my eyes are blue.) 23andMe is floundering in part because it hasn’t managed to prove the value of collecting all that sensitive, personal information. And potential buyers may have very different ideas about how to use the company’s DNA data to raise the company’s bottom line. This should concern anyone who has used the service.
DNA might contain health information, but unlike a doctor’s office, 23andMe is not bound by the health-privacy law HIPAA. And the company’s privacy policies make clear that in the event of a merger or an acquisition, customer information is a salable asset. 23andMe promises to ask its customers’ permission before using their data for research or targeted advertising, but that doesn’t mean the next boss will do the same. It says so right there in the fine print: The company reserves the right to update its policies at any time. A spokesperson acknowledged to me this week that the company can’t fully guarantee the sanctity of customer data, but said in a statement that “any scenario which impacts our customer's data would need to be carefully considered. We take the privacy and trust of our customers very seriously, and would strive to maintain commitments outlined in our Privacy Statement.”
Certain parties might take an obvious interest in the secrets of Americans’ genomes. Insurers, for example, would probably like to know about any genetic predispositions that might make you more expensive to them. In the United States, a 2008 law called the Genetic Information Nondiscrimination Act protects against discrimination by employers and health insurers on the basis of genetic data, but gaps in it exempt providers of life, disability, and long-term-care insurance from such restrictions. That means that if you have, say, a genetic marker that can be correlated with a heart condition, a life insurer could find that out and legally deny you a policy—even if you never actually develop that condition. Law-enforcement agencies rely on DNA data to solve many difficult cases, and although 23andMe says it requires a warrant to share data, some other companies have granted broad access to police. You don’t have to commit a crime to be affected: Because we share large chunks of our genome with relatives, your DNA could be used to implicate a close family member or even a third cousin whom you’ve never met. Information about your ethnicity can also be sensitive, and that’s encoded in your genome, too. That’s all part of why, in 2020, the U.S. military advised its personnel against using consumer tests.
Read: Big Pharma would like your DNA
Spelling out all the potential consequences of an unknown party accessing your DNA is impossible, because scientists’ understanding of the genome is still evolving. Imagine drugmakers trolling your genome to find out what ailments you’re at risk for and then targeting you with ads for drugs to treat them. “There’s a lot of ways that this data might be misused or used in a way that the consumers couldn’t anticipate when they first bought 23andMe,” Suzanne Bernstein, counsel at the Electronic Privacy Information Center, told me. And unlike a password that can be changed after it leaks, once your DNA is out in the wild, it’s out there for good.
Some states, such as California, give consumers additional genetic-privacy rights and might allow DNA data to be deleted ahead of a sale. The 23andMe spokesperson told me that “customers have the ability to download their data and delete their personal accounts.” Companies are also required to notify customers of any changes to terms of service and give them a chance to opt out, though typically such changes take effect automatically after a certain amount of time, whether or not you’ve read through the fine print.
Consumers have assumed this risk without getting much in return. When the first draft of the human genome was unveiled, it was billed as a panacea, hiding within its code secrets that would help each and every one of us unlock a personalized health plan. But most diseases, it turns out, can't be pinned on a single gene. And most people have a boring genome, free of red-flag mutations, which means DNA data just aren’t that useful to them—at least not in this form. And if a DNA test reveals elevated risk for a more common health condition, such as diabetes and heart disease, you probably already know the interventions: eating well, exercising often, getting a solid eight hours of sleep. (To an insurer, though, even a modicum of risk might make someone an unattractive candidate for coverage.) That’s likely a big part of why 23andMe’s sales have slipped. There are only so many people who want to know about their Swedish ancestry, and that, it turns out, is consumer DNA testing’s biggest sell.
Read: DNA tests are uncovering the true prevalence of incest
Wojcicki has pulled 23andMe back from the brink before, after the Food and Drug Administration ordered the company to stop selling its health tests in 2013 until they could be proved safe and effective. In recent months, Wojcicki has explored a variety of options to save the company, including splitting it to separate the cash-burning drug business from the consumer side. Wojcicki has still expressed interest in trying to take the company private herself, but the board rejected her initial offer. 23andMe has until November 4 to raise its shares to at least $1, or be delisted. As that date approaches, a sale looks more and more likely—whether to Wojcicki or someone else.
The risk of DNA data being misused has existed since DNA tests first became available. When customers opt in to participate in drug-development research, third parties already get access to their de-identified DNA data, which can in some cases be linked back to people’s identities after all. Plus, 23andMe has failed to protect its customers’ information in the past—it just agreed to pay $30 million to settle a lawsuit resulting from an October 2023 data breach. But for nearly two decades, the company had an incentive to keep its customers’ data private: 23andMe is a consumer-facing business, and to sell kits, it also needed to win trust. Whoever buys the company’s data may not operate under the same constraints.