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23andMe users’ genetic data is at risk, state AGs warn

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westvirginiawatch.com – Anna Claire Vollers – 2025-05-05 05:00:00

by Anna Claire Vollers, West Virginia Watch
May 5, 2025

The fate of more than 15 million customers’ genetic data remains in limbo after popular DNA testing company 23andMe filed for bankruptcy in March. The data is up for sale, stoking fears about how it might be used and prompting attorneys general from more than a dozen states to warn 23andMe users: Delete your data.

“Your genetic data is your most personal, confidential data, and you should be able to protect who has access to it,” North Carolina Attorney General Jeff Jackson, a Democrat, said in a March statement.

“You have the power to delete your data now — please act quickly.”

Dr. Adam Brown, a Washington, D.C.-based emergency physician and the founder of a health care strategy firm, deleted his information on 23andMe as soon as he learned of the bankruptcy filing, he told Stateline.

For him, the bankruptcy begs a vital question that federal and state laws don’t fully address: What happens to your genetic data when the company holding it collapses?

Federal protections are flimsy. States have beefed up their genetic privacy laws in recent years, but many experts say they don’t go far enough.

There actually are not a lot of data privacy protections for consumers, especially for these direct-to-customer-type businesses.

– Dr. Adam Brown, emergency physician and founder of a health care strategy company

23andMe has said the bankruptcy will not change how it stores, manages or protects its trove of sensitive customer information. In a news release issued shortly after the bankruptcy announcement, the company said any potential buyers would have to agree to comply with 23andMe’s consumer privacy policy and all applicable laws. When contacted by Stateline, the company declined to comment beyond what it has published in news releases and information it posted for customers on its website.

But once the data is in the hands of another company, that company could change its privacy policy at any time, experts noted.

“Once you get to the point of bankruptcy court, there may not be those same guarantees or the same ethos a new company may have around privacy protections for consumers,” Brown said.

“I want people to understand there actually are not a lot of data privacy protections for consumers, especially for these direct-to-customer-type businesses.”

HIPAA doesn’t help

Companies such as 23andMe offer their users potentially game-changing revelations about their health and ancestry. The process is simple: Mail in a saliva sample and the company uses it to build an individual genetic profile that can reveal not only a person’s family connections, but also health insights such as their risk of developing a disease like cancer or Alzheimer’s.

This valuable personal data underpins a direct-to-customer genetic testing market that was valued at $1.93 billion globally in 2023 and is expected to grow, according to market research firm Grand View Research.

23andMe was an industry giant until its stock price plummeted following a massive 2023 data breach that affected the accounts of nearly 7 million customers. Then came the $30 million class-action lawsuit settlement.

The company declared bankruptcy in late March of this year, and announced it’s up for sale.

A flurry of alerts from state attorneys general around the country soon followed. AGs from states including Alabama, Arizona, California, Kentucky, New Hampshire, North Carolina and Texas issued similar press releases that recommended customers ask the company to delete their genetic profile and destroy the saliva sample used to create it.

“We have robust state privacy laws that include data deletion rights, and I would encourage any Texan concerned about their data to exercise the right to have their data securely deleted,” Texas Attorney General Ken Paxton, a Republican, said in an April statement.

The fear is that a new 23andMe owner could choose to use or share sensitive personal genetic data in ways the company’s current privacy policy doesn’t allow. There’s worry it could be used, for example, to inflate people’s life insurance premiums or expose them to employment discrimination.

And there aren’t many guardrails to prevent that from happening.

HIPAA, the Health Insurance Portability and Accountability Act, doesn’t apply to companies like 23andMe. The landmark federal law protects patients’ sensitive health information when it’s handled by doctors, hospitals and health insurers. But direct-to-customer companies such as 23andMe or Ancestry aren’t considered health care providers, and their non-invasive saliva collection kit isn’t considered a medical test.

The main federal law that protects people from discrimination based on their genetic information is nearly 20 years old. The Genetic Information Nondiscrimination Act (GINA) was passed in 2008, long before the rise of at-home testing kits. It applies to employers and health insurers, but not to life insurance companies, mortgage lenders and other non-health entities. And it doesn’t explicitly protect epigenetic information, which is information about the way a person’s genes — and by extension, health — are affected by outside factors such as smoking, disease or stress.

What states are doing

In the past five years, at least 14 states have passed laws regulating direct-to-consumer genetic testing offered by companies like Ancestry and 23andMe. There’s variation, but generally the laws require companies to get customers’ express consent before using or sharing their data, and allow customers to request their genetic data be deleted and biological samples destroyed.

It’s a good start, but doesn’t go far enough, said Anya Prince, a University of Iowa law professor whose research focuses on health and genetic privacy.

Many of those state efforts were built around a model law developed by the Coalition for Genetic Data Protection, an industry group with two member companies: 23andMe and Ancestry.

As DNA testing kits exploded in popularity and attracted increased scrutiny from lawmakers, the coalition pushed to influence legislation and set industry standards. The privacy protections in the laws mirror what 23andMe and Ancestry were already doing with their own privacy policies, experts say.

“They do have some really sensible privacy protections,” said Prince. “It’s great that people can delete their genetic data, and it’s great that law enforcement needs a warrant to access it. But if a privacy advocate had written a model law, there would be the potential for more and broader protections.”

For example, she said, many of the state laws address privacy requirements just for direct-to-consumer DNA testing companies. If 23andMe’s data is bought by, say, a pharmaceutical company, those state laws no longer apply.

The coalition now appears to be inactive, its website defunct.

Since 2020, more than a dozen states have passed some version of a genetic information privacy law, including Alabama, Arizona, California, Florida, Kentucky, Maryland, Montana, Nebraska, South Dakota, Tennessee, Texas, Utah, Virginia and Wyoming, based on a Stateline analysis. This year, the Indiana legislature passed a bill that’s now headed to the governor’s desk. Bills have been introduced this year in other states, including West Virginia.

Prince said state laws rely too heavily on consumers to self-manage their data privacy. They’re expected to understand a company’s policy, when studies have shown the public often doesn’t read privacy notices nor fully understand how companies use their data. Further, many state laws don’t address how third parties, such as law enforcement, can access and use consumer genetic data.

It’s also not always clear how the laws will be enforced, or who’s responsible for oversight.

“In general, I think there’s a disconnect between how people think their privacy is protected and how it’s actually protected,” she said.

But a few states have enacted laws that are more robust. California, for example, has a genetic information privacy law, but also has a general data protection law, as well as a state version of the federal GINA law that extends genetic anti-discrimination protections into areas including housing, education and licensing.

Florida has beefed up its DNA privacy laws in recent years, making the using or selling of an individual’s DNA without informed consent a felony punishable by up to 15 years in prison and up to a $10,000 fine. Florida was also the first state to prohibit life, disability and long-term care insurance companies from using genetic information to determine coverage.

How to delete your 23andMe data

Log in to your 23andMe account on 23andme.com.Under your profile, click “Settings.”Scroll to the “23andMe Data” section.Click the “View” button.If you want a copy of your genetic data, choose the option to download it to your device before proceeding.Scroll to the “Delete Data” section.Click “Permanently Delete Data.”Check your email for a confirmation email from 23andMe, then follow the link in the email to confirm your deletion request.

If you previously opted to have your saliva sample and DNA stored by 23andMe but want to change that preference, you can do so from your account settings page, under “Preferences.”

If you previously consented to 23andMe and third-party researchers using your genetic data and sample for research purposes, you can withdraw that consent from your account settings page, under the “Research and Product Contents” section.

If you have concerns, you can contact your state attorney general’s office. Find yours at www.naag.org/find-my-ag/.

Source: Office of the Attorney General for the District of Columbia

Stateline reporter Anna Claire Vollers can be reached at avollers@stateline.org.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org.

West Virginia Watch is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. West Virginia Watch maintains editorial independence. Contact Editor Leann Ray for questions: info@westvirginiawatch.com.

The post 23andMe users’ genetic data is at risk, state AGs warn appeared first on westvirginiawatch.com



Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Centrist

This content presents a balanced view focusing on consumer privacy concerns related to genetic data held by 23andMe, highlighting legal and regulatory gaps without leaning heavily toward partisan political positions. It includes statements from both Democratic and Republican attorneys general, expert opinions, and facts about federal and state laws. The coverage raises awareness about privacy and regulatory issues in a factual, non-ideological manner, typical of centrist or neutral reporting.

News from the South - West Virginia News Feed

WEEKEND WEATHER AUG 24TH

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www.youtube.com – WOAY TV – 2025-08-24 18:05:16

SUMMARY: WEEKEND WEATHER AUG 24TH: Today was a pleasant, typical summer day with temperatures reaching 80° in Beckley. A cold front is moving through tonight, bringing increasingly breezy winds and cooler air, dropping temps to the high 50s overnight and into the 40s early next week. Rain chances remain very low, with mainly dry conditions expected tonight and tomorrow. Monday will feature a mix of clouds and sun with highs in the high 60s to low 70s—cooler than normal. Low humidity and comfortable weather will continue through the week, making it a great time to enjoy the outdoors as fall arrives early.

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News from the South - West Virginia News Feed

Feds direct states to check immigration status of their Medicaid enrollees

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westvirginiawatch.com – Anna Claire Vollers – 2025-08-22 05:00:00


The U.S. Department of Health and Human Services, led by Robert F. Kennedy Jr., announced a new initiative to verify immigration and citizenship status of Medicaid and Children’s Health Insurance Program (CHIP) enrollees. States will receive monthly reports identifying individuals whose status cannot be confirmed and must verify eligibility, potentially adjusting coverage or enforcing rules. Medicaid covers about 71 million people, with CHIP covering 7 million children. Undocumented immigrants are ineligible for federally funded Medicaid and CHIP, though some states provide coverage regardless of status. Recent federal budget cuts reduce Medicaid funding and impose stricter immigrant eligibility restrictions starting in 2026.

by Anna Claire Vollers, West Virginia Watch
August 22, 2025

This week, the Trump administration’s Centers for Medicare & Medicaid Services (CMS) announced an effort to check the immigration status of people who get their health insurance through Medicaid and the Children’s Health Insurance Program.

Medicaid is the public health insurance program for people with low incomes that’s jointly funded by states and the federal government. For families that earn too much to qualify for Medicaid but not enough to afford private insurance, CHIP is a public program that provides low-cost health coverage for their children.

The feds will begin sending states monthly enrollment reports that identify people with Medicaid or CHIP whose immigration or citizenship status can’t be confirmed through federal databases. States are then responsible for verifying the citizenship or immigration status of individuals in those reports. States are expected to take “appropriate actions when necessary, including adjusting coverage or enforcing non-citizen eligibility rules,” according to a CMS press release.

“We are tightening oversight of enrollment to safeguard taxpayer dollars and guarantee that these vital programs serve only those who are truly eligible under the law,” Robert F. Kennedy Jr., who oversees CMS as secretary of the U.S. Department of Health and Human Services, said in a press release announcing the new program.

As of April, roughly 71 million adults and children nationwide have Medicaid coverage, while another 7 million children have insurance through CHIP. Immigrants under age 65 are less likely to be covered by Medicaid than U.S.-born citizens, according to an analysis from health research organization KFF.

Immigrants who are in the country illegally aren’t eligible for federally funded Medicaid and CHIP. Only citizens and certain lawfully present immigrants — green card holders and refugees, for example — can qualify.

But some states have chosen to expand Medicaid coverage for immigrants with their own funds. Twenty-three states offer pregnancy-related care regardless of citizenship or immigration status, according to KFF. Fourteen states provide coverage for children in low-income families regardless of immigration status, while seven states offer coverage to some adults regardless of status.

The tax and spending package President Donald Trump last month cuts federal spending on Medicaid by more than $1 trillion, leaving states to either make up the difference with their own funds or reduce coverage. But the new law also includes restrictions on coverage for certain immigrants, including stripping eligibility from refugees and asylum-seekers.

Stateline reporter Anna Claire Vollers can be reached at avollers@stateline.org.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org.

West Virginia Watch is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. West Virginia Watch maintains editorial independence. Contact Editor Leann Ray for questions: info@westvirginiawatch.com.

The post Feds direct states to check immigration status of their Medicaid enrollees appeared first on westvirginiawatch.com



Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Centrist

This article provides a balanced overview of recent policy changes to Medicaid and CHIP enrollment verification tied to immigration status. It presents facts, official statements, and statistics without emotive language or partisan framing. Both the rationale behind the policy, such as safeguarding taxpayer dollars, and the impact on immigrants are covered objectively. The inclusion of context on eligibility rules and varying state approaches reinforces a neutral, informative tone, typical of centrist reporting seeking to inform rather than advocate.

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News from the South - West Virginia News Feed

Students go back to school in West Virginia, but same education debates rage

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westvirginiawatch.com – Andrew Donaldson – 2025-08-21 04:55:00


The article highlights ongoing debates in West Virginia education, centered on control, funding, and policy rather than student learning. The COVID-19 pandemic exposed and intensified existing systemic flaws, disrupting schooling and revealing competing priorities between education as a public service and as a jobs/funding mechanism. Political battles over vaccines, school choice, and curriculum continue, often clashing with classroom realities. Despite media and political noise, teachers and students persist in an underfunded system, navigating confusion and criticism. Students witness adults’ true attitudes toward education and their futures, influencing their trust and engagement with the system as it operates continuously from one school year to the next.

by Andrew Donaldson, West Virginia Watch
August 21, 2025

While students across the Mountain State are going back to school to advance to the next grade, many parents and most of the politicians seemed to be held back in the same spots with the same education arguments of the last few years.

News headlines and social media stories come one at a time on the as-needed basis as events and the business model dictate. But separate news items and viral debates over school choice, school funding, school vaccination requirements, school closings, school performance, and school staffing are variations on one theme: What is education, and who should control it?

That basic “who/what” question of intent and control is not unique to education issues. All political stories when reduced to their essences are stories about power and money. Education has become more and more a political endeavour, because of inherently involved power and money. As such, the rules of discerning politics apply far more than the traditional policy ideas and learning philosophies of what information goes into a student and how to evaluate the information coming out of a student. Add in the culture warring elements fueled by the modern marriage of news media and social media, and you have an environment that is heavy on the vibes and light on vocation.

The COVID-19 crisis is justifiably noted to be an inflection point in the push-pull world of policy and politics in general and education specifically. COVID — or more specifically the reaction by the people involved in running the institutions of American society from schools, to government, to health care, to social order — revealed the pre-existing flaws with a stress test that most everyone failed to one degree or another. While the high-minded ideals of learning, education and bettering the next generation were still recited as if the words themselves would magically manifest such things into malleable minds, reality told a different story.

Schools were closed, opened, closed again, re-opened with restrictions and not-ready-for-prime-time hybrid and online learning. Exceptions and standards had to be adjusted on the fly. Parents and the government had a tug-of-war over who could better understand an unprecedented crisis in public health and public trust with in-classroom teachers and their students as the rope.

The generation of students who lived through it heard all the buzzwords and platitudes, but weighed them against their lived experience, and found them wanting. Words said education matters, students matter, learning matters. Actions told them the priority of the education system was to be a giant jobs and funding program first, a daycare for parents second, and once that was all satisfied, perhaps you might learn something while being taught to pass a test to show what you learned.

Post-COVID, plenty of parents and politicians seem unable to let go of the tug-of-war rope. While the individual debates over issues like the vaccine exemptions, the ballooning cost of the Hope Scholarship, and debates over what should and shouldn’t be included in curriculum continue, perspective is badly needed that all these threads form the one cord of systematically educating students. The in-classroom teachers and students are on a treadmill that starts every August and keeps going until the following June. Education in the United States of America in the Year of Our Lord 2025 is very much a machine that does not stop.

The ever-entwined socio-political news and social media coverage of education runs at variable speeds, mostly parallel to the actual in-classroom education system. When the news narratives and social media attention does cross over into the real world education system, chaos and confusion are usually the result. Regardless of the chaos or the reason du jour, the in-classroom teachers have to press ahead with the students. While the algorithms and consultants keep us entertained, the pressure on an already overworked, underfunded and constantly criticized in-classroom environment is doing no one any favors.

Not that there ever was an era of magnanimous politics, but even with cellphones being banned from classrooms the rising generations of students have more information on current events than ever before. Those students aren’t just learning the curriculum; they are learning what the adults — teachers, parents, government officials, administrators — really think about them and their place in the education and political machines that drive America. And they are going to believe us.

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West Virginia Watch is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. West Virginia Watch maintains editorial independence. Contact Editor Leann Ray for questions: info@westvirginiawatch.com.

The post Students go back to school in West Virginia, but same education debates rage appeared first on westvirginiawatch.com



Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

The content presents a critical view of the current education system, highlighting systemic issues such as underfunding, politicization, and the impact of COVID-19 on schooling. It emphasizes the struggles of teachers and students within a politicized environment and calls for broader perspective and reform. While it critiques both political sides and the media’s role, the focus on social challenges and institutional shortcomings aligns more closely with center-left perspectives that advocate for systemic improvements and greater support for public education.

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