Latest news with #GeneticInformationPrivacyAct
Yahoo
02-04-2025
- Business
- Yahoo
How to protect (and delete) your DNA data after 23andMe bankruptcy filing
SALT LAKE CITY () — The genetic testing company and announced it was looking to sell 'substantially all of its assets.' Here's what experts say that could mean for Utahns. 'Utah's protections for genetic information are more robust than what is available at the federal level,' Clark Asay, Associate Dean and professor of law at BYU Law School, told 'Utah law includes both the Utah Consumer Privacy Act and the Genetic Information Privacy Act.' The (UCPA) and the (GIPA) give Utahns the right to rescind a company's access to their genetic data, request the destruction of their genetic sample, and delete their account, according to the (DCP). LEARN MORE: 23andMe files for Chapter 11 bankruptcy as co-founder and CEO resigns 'If you previously submitted a test sample to 23andMe and wish to ensure that it is no longer stored or used, you have the right to make this request,' the DCP explained in a consumer advisory. It's also possible to delete your 23andMe account directly through your account settings on the company's website. The DCP says 23andMe should automatically discard your sample and opt you out of any research after your account is deleted. 'Under Utah law, you have a right to control your personal data — like the kind that 23andMe has,' Utah Attorney General Derek Brown said. In a , 23andMe said there will be 'no changes to the way the Company stores, manages, or protects customer data' throughout the sale process. However, experts warn that . Sameer Patil is an associate professor at the University of Utah's . He told that it is unclear who may buy 23andMe next, which means it is also unclear what may happen with people's data stored by the company. 'Perhaps you trusted 23andMe, and you shared the data with 23andMe — that same level of trust, whether that's warranted with the next buyer, you don't know that because you don't even know who that next buyer is going to be,' Patil explained. He also said the new buyer's privacy policies and data handling policies may not offer the same protections as 23andMe's policies. 'The whole manner in which this data is stored, shared, used, sold, handled could be completely different from how it is now,' Patil said. 'The big point here is, because there's no guarantee who the next buyer is going to be, you have no idea of evaluating that until you know who the next buyer is going to be.' 'This is a new frontier in terms of bankruptcies,' Brown said. 'This time, the assets are the most sensitive, confidential types of information you can have, which is your genetic fingerprint. And so, it's critical that people understand that, and are aware of their rights as it pertains to this issue.' The Utah Attorney General's Office and the DCP have provided steps you can take to remove your information from the company's databases. The steps to delete your data (as provided in the ) are as follows: 'Sign in to your 23andMe account at 'Navigate to your profile's 'Settings' section. 'Scroll down to the '23andMe Data' section at the bottom of the page. 'Click 'View' next to the '23andMe Data' heading. 'If you would like to keep a copy of your genetic data, download your data before continuing. 'Locate the delete data option. 'Select 'Permanently Delete Data'. 'Check your email for a confirmation link and follow it to complete the deletion process.' It is also possible to change your settings to opt out of allowing 23andMe to store your saliva sample and DNA through the 'Preferences' on your 23andMe account page. You can also withdraw consent to have your genetic information be used by third-party researchers under 'Research and Product Consents,' the DPC said. Asay warned that the company may have 'already secured consent for transferring data to third parties as part of their standard business practices.' That means that it's possible your information or sample has already been shared — but you can still delete your account and samples to keep it from happening after the company is sold. 'As long as 23andMe is complying with their own privacy policies and with the law, they're obligated to delete that information,' Patil said. 'As long as that happens before any sale, merger, acquisition even takes place, then you don't even have to worry about who the new buyer is going to be because your data no longer exists for it to be transferred or sold.' No, genetic data is not protected by the Health Insurance Portability and Accountability Act (HIPAA). Patil said genetic information is not considered health information or a healthcare record. He also said 23andMe is not considered a healthcare provider, so HIPAA doesn't apply. Asay confirmed that HIPAA does not cover genetic data. 'HIPAA applies to entities that transmit 'protected health information' in standard HHS formats (i.e., basically entities that take payment in the form of insurance or government benefits),' Asay told Asay explained that, while Utah has UCPA and GIPA, private citizens cannot enforce those laws — they have to be enforced by the state attorney general. Additionally, the DCP said that the UCPA gives Utahns the right to opt out of allowing companies to sell their data, and the right to obtain a copy of the data you may have previously provided. More information about rights under the UCPA and GIPA is . The Associated Press, Renisha Mall, and Matthew Drachman contributed to this report. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
29-03-2025
- Business
- Yahoo
Attorney General Jonathan Skrmetti reminds Tennesseans of their right to delete genetic data amid 23AndMe bankruptcy filing
NASHVILLE, Tenn. (WKRN) — The message from Tennessee Attorney General Jonathan Skrmetti is that you have a right to delete your genetic testing results from 23andMe's database. The genetic testing company has filed for bankruptcy. In a Friday press release, Skrmetti's office said that 23andMe intends to substantially sell its assets as part of the bankruptcy process. Those assets, Skrmetti's office said, include personal data and genetic testing results from customers. RELATED: Consider deleting your 23andMe data now, California AG urges 'Our genetic information is some of our most personal data, giving insight about not just us but our families,' Skrmetti said. 'People trusted 23andMe with their DNA to learn more about who they are, and now the company appears poised to sell that incredibly sensitive data to unknown buyers. Any Tennessee consumer who wants to delete their data and ensure their sample is destroyed should follow the step-by-step instructions provided on our website.' In July 2023, the state's Genetic Information Privacy Act went into effect. That law requires companies to protect consumers' private information and provide consumers with the ability to access their data and destroy their biological sample, if they want. ⏩ If you're a 23andMe customer in Tennessee and you want to learn more about how to download a copy of your genetic data and delete it, follow this link. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
27-03-2025
- Business
- Yahoo
Officials think you should delete your 23andMe data. Here's how
Genetic testing company 23andMe (ME) filed for bankruptcy protection Sunday in the latest stage of a rocky road that included weak consumer demand and a 2023 data breach that jeopardized the genetic data of millions of customers. Now, the company might get sold. To facilitate a sale, the company has entered Chapter 11 proceedings in the U.S. Bankruptcy Court for the Eastern District of Missouri, and CEO (and co-founder) Anne Wojcicki has resigned. Her bid to buy the company and take it private at 41 cents per share was rejected. 23andMe holds the genetic information of more than 15 million people worldwide. Ahead of the sale, some officials have started ringing the alarm for customers. Although 23andMe has said there will be no changes to how it stores, manages, or protects customer data, California Attorney General Rob Bonta issued a consumer alert Friday, reminding Californians of 'their right to direct the deletion of their genetic data under the Genetic Information Privacy Act (GIPA) and California Consumer Privacy Act (CCPA).' Your DNA is considered sensitive data but is less protected than you might think. There have been instances where it has been used to determine life or disability insurance rates based on risks in your genetic makeup. The company does offer an option to permanently delete your account — 23andMe will stop using your DNA for research purposes, get rid of your genetic sample, and delete most of your genetic information from its databases. 'Most' is the caveat here. The company says it is 'required to retain some information to comply with our legal obligations.' That means 23andMe can retain some genetic information, your date of birth and sex, and information related to your account (such as your email address) for a limited time. It's uncertain how long that entails. Deleting your account is irreversible. If you still want to go through with the process, here's a step-by-step look at how to do it. 1. Log in to your 23andMe account, click on your account profile on the upper right corner of the website, and go to 'account settings.' 2. Scroll down to the '23andMe data' section and click 'view.' 3. Here, 23andMe will give you the option to download your data in machine-readable formats (.txt and .csv) before you delete it — this data includes things such as your ancestry composition raw data, health report summaries, DNA segments, and profile data of your DNA relatives. Downloading your data is optional and separate from the account deletion process, but it's recommended by the company. 4. At the bottom of the page, click 'permanently delete data.' 5. Check your inbox for an email from the company asking you to confirm your account deletion request. Once you confirm, 23andMe will begin the deletion process, and you will lose all access to your account. 6. If you face any difficulty throughout the deletion process, contact customercare@ for assistance. For the latest news, Facebook, Twitter and Instagram. Sign in to access your portfolio
Yahoo
26-03-2025
- Yahoo
Why I'm Not Deleting My 23andMe Genetic Data
Various corners of the media and internet are hyperventilating over the alleged genetic privacy implications of the imminent Chapter 11 bankruptcy of the direct-to-consumer genetic testing company 23andMe. "Delete your DNA from 23andMe right now," yelps a headline over at The Washington Post. Why? "Unless you take action, there is a risk your genetic information could end up in someone else's hands—and used in ways you had never considered," ominously warns Post journalist Geoffrey Fowler. NPR reports that Suzanne Bernstein, counsel at the nonprofit Electronic Privacy Information Center, advises that any concerned 23andMe customers should delete their data, request that their saliva sample be destroyed, and revoke any permissions they may have given to use their genetic information for research. "This is just the first example of a company like this with tremendous amounts of sensitive data being bought or sold," she added. California Attorney General Rob Bonta urgently issued a consumer alert reminding "Californians of their right to direct the deletion of their genetic data under the Genetic Information Privacy Act (GIPA) and California Consumer Privacy Act (CCPA)." Calm down people. Genetic data are not especially toxic or extraordinarily dangerous. Nor are the privacy implications all that dire, especially compared to other widely available and easily deployed surveillance tools. It is true that your genome is a permanent and immutable marker of your personal identity, but so too are your fingerprints and your face. The FBI's Next Generation Identification system contains the fingerprints of more than 186 million criminal, civil, and military individuals. (As a twenty-something, I worked briefly as a federal bureaucrat so my fingerprints are definitely in the system.) While fingerprints have to be collected onsite and compared using offsite databases, facial recognition cameras with real-time database matching can become ubiquitous, able to track you nearly everywhere you go in public. Your face may be your passport but it's also your snitch. Another often-expressed concern is that your genetic data could be used to identify relatives who have committed crimes. Police are now regularly using forensic genetic genealogy to identify suspects. They compare a DNA sample from a crime scene with commercial DNA databases, searching for genetic similarities among customers who may be relatives. Genealogists then identify likely suspects by cross-referencing the genetic data with traditional genealogical sources, such as census records, birth and death certificates, and so forth. It is worth noting that 23andMe requires a warrant to release customer data to the police, unlike some other direct-to-consumer genetic testing companies. In addition, the FBI's National DNA Index contains over 18,135,382 offender profiles, 5,774,055 arrestee profiles, and 1,391,726 forensic profiles as of January 2025. Data deletion alarmists point out that 23andMe suffered a data breach in 2023 in which the records of nearly 7 million of its customers were stolen by a hacker. Sounds bad, but do you know who else suffered recent data breaches? Hospital and medical records companies: some 2.7 million patient records held by ESO Solutions; 9 million held by medical transcription firm Perry Johnson & Associates; 8.5 million at Welltok; and 11 million at HCA Healthcare. All of these were just in 2023. Overall, healthcare breaches exposed 385 million patient records between 2010 to 2022. Hackers typically demand a ransom to unencrypt pilfered files, but also often engage in double extortion by also threatening to publicly release them. Medical records companies pay because they fear that data exposure can lead to legal consequences, regulatory fines, and reputational damage. Much less commonly, hackers try to blackmail individual patients. A couple of such instances involved attempts to blackmail patients at a Finnish mental health clinic and a Florida plastic surgery practice. Compare the consequences of these non-genetic database breaches to how information from the 23andMe data breach could supposedly be misused. One suggestion is that your genetic data might be used to blackmail you. If you've committed an unsolved murder or a rape or have produced stray progeny, you might worry about the prospect of blackmail. Data such as names, addresses, and birth dates stored by 23andMe might be used to impersonate you, but that is not a risk particular to the genetic information collected by 23andMe. More far-fetched is the notion that your genetic data might somehow contribute to the creation of a bioweapon. But what about genetic discrimination? The Genetic Information Nondiscrimination Act of 2008 (GINA) forbids employers and health insurers from requiring genetic data from you or using it to discriminate against you. For example, health insurers may not use genetic information to determine if someone is eligible for insurance or to make coverage, underwriting, or premium-setting decisions. However, GINA does not cover life, disability, or long-term care insurance. So far, Florida is the only state that forbids life and long-term insurance providers to cancel, limit, or deny coverage or establish differentials in insurance rates based on genetic information. In any case, no life insurance companies so far require any genetic testing or access to direct-to-consumer genetic data when issuing policies. They can, however, consider any genetic data that is included as a matter of course in a person's medical records, which somewhat paradoxically can lead to insights about a patient's genetics. Let me use myself as an example. A few years back I was seeking to purchase some additional life insurance, which involved disclosing my medical records, a physical exam, and some blood tests. Based on a specific blood test revealing slightly elevated NT-ProBNP levels, the company doubled its offered premium. I turned down the insurance, but I was intrigued by the data suggesting possible heart failure. To make a long story short, MRIs found that I did have a touch of hypertrophic cardiomyopathy (HCM) that has very slightly thickened the walls of my left ventricle. Initial genetic testing by Invitae reported an inconclusive test result showing a change in the TNNC1 gene that may or may not cause or contribute to HCM. Subsequent evaluation eventually concluded that the variant does contribute to HCM. Hopefully, the information about my TNNC1 variant will be of use to others in the future. The good news is that the interaction of that genetic variant with my environment has resulted in a very mild version of the malady, such that my cardiologist assures me my HCM genetics is not what is going to kill me. More cases of non-genetic medical tests uncovering genetic contributions to ailments are already on the way. For example, recent very accurate blood tests can diagnose the development of Alzheimer's disease years in advance. Whereas tests for gene variants associated with late-onset Alzheimer's identify increased risk of the malady. For what it's worth, my 23andMe test results tell me that I do not carry the Alzheimer's high-risk APOE4 variant. So far as I can tell, no life or long-term care insurance companies are requiring such blood tests yet, but given my NT-ProBNP experience, they will likely include them soon. And insurers doubtlessly will now take Alzheimer's blood test results into account if they turn up in your medical records. Let's consider privacy with respect to medical versus genetic data. All of us experience some self-consciousness about the infirmities and illnesses that inevitably afflict us. That self-consciousness stems partially from the fact that none of us wants to be regarded by others as weak and incompetent, unable to pull our own weight. Our medical records document the toll that time takes on our bodies. So privacy protections (the damnable Health Insurance Portability and Accountability Act—a topic for another time) are supposed to provide us with some measure of control over what we reveal to others as we curate our public images as independent and capable agents. But how self-conscious should a person be about their genetic information? I interviewed Michael Cariaso, developer of the online genetic analysis tool Promethease, for my 2011 article on the early days of direct-to-consumer genetic testing. Asked why he had not publicly posted his genetic testing results, he responded, "someone later might discover that I have genes for a short penis and low intelligence." Undeterred by similar concerns, I posted online my 23andMe genetic screening results at SNPedia, where I invite anyone to review my numerous genetic flaws. My 23andMe health predisposition reports suggest that I have gene variants that put me at higher risk for coronary artery disease, gallstones, non-alcoholic fatty liver disease, atrial fibrillation, and severe acne. I list those specifically because I have recently had medical tests that show no coronary artery blockages, no gallstones, a normal liver, and a regularly beating heart. I confess that I had a morbidly bad case of acne back in high school. With respect to the other high-risk variants identified by my genetic screening tests, none have resulted in any noticeable illnesses as yet. Other genes (certainly not my clean living) not sequenced or identified yet by 23andMe are likely counteracting the deleterious effects of the higher-risk variants. Clearly, I think that the deletists' claim that the genetic information held by 23andMe is especially "sensitive" is wrong. I invite my fellow 23andMe customers to consider why nearly 80 percent of you agreed to participate in 23andMe research efforts. Besides hoping to gain some insights about yourself, you also want to help advance medical science. The company may or may not survive, but its stored genetic data remains a scientifically and medically valuable resource that some other research firm or institution may use to help develop new treatments and cures. Keep that in mind and resist being panicked into deleting your data for some speculative gain in privacy. The post Why I'm Not Deleting My 23andMe Genetic Data appeared first on
Yahoo
25-03-2025
- Business
- Yahoo
23andMe users told to consider deleting their data by California attorney general as the company files for bankruptcy
23andMe users are being advised to delete their data as the company files for bankruptcy. The California attorney general issued a consumer alert urging users of the biotech company to consider asking the company to delete their data and destroy any samples of genetic material. California attorney general Rob Bonta is urging 23andMe users to ask the company to delete their data and destroy any samples of genetic material as it files for bankruptcy. The biotech company said on Sunday it had started voluntary Chapter 11 proceedings in the US Bankruptcy Court for the Eastern District of Missouri. It is operating as usual throughout the sale process. On Friday, when rumors of 23andMe's plans started to circulate, Bonta issued a consumer alert reminding users of their right to request the biotech company to delete their genetic information under the Genetic Information Privacy Act (GIPA) and California Consumer Protection Act (CCPA). 'California has robust privacy laws that allow consumers to take control and request that a company delete their genetic data,' Bonta said in a statement. 'Given 23andMe's reported financial distress, I remind Californians to consider invoking their rights and directing 23andMe to delete their data and destroy any samples of genetic material held by the company.' Users can request that 23andMe delete their genetic data in the "settings" section of their profile under "23andMe Data" at the bottom of the page. Users can also download a copy of their genetic data for personal storage. If users previously opted to have a saliva sample and DNA stored by 23andMe, they can change that under the "Preferences" section. Representatives for 23andMe said in an open letter to customers that their data remains protected. "The Chapter 11 filing does not change how we store, manage, or protect customer data," the company said. "Any buyer of 23andMe will be required to comply with applicable law with respect to the treatment of customer data." 23andMe has had a tumultuous few years. The company is still grappling with the aftermath of a massive 2023 data breach that compromised the information of nearly 7 million people—around half of its customer base. As many of its 15 million users rush to remove their genetic data from company records, revenue has continued to decline. In November, the company laid off 200 employees—around 40% of its workforce—and halted the development of all its therapies. The company's CEO and cofounder, Anne Wojcicki, also announced she was stepping down over the weekend. She will be temporarily replaced by the company's chief financial officer, Joe Selsavage, but will remain on the 23andMe board. Wojcicki had been advocating for a buyout since April of last year, but the company's board rejected the proposal. In late February, Wojcicki teamed up with New Mountain Capital, a venture capital firm, to propose buying out the struggling company's shareholders at $2.53 per share, valuing the company at $74.7 million. Just four years ago, the biotech firm was worth $6 billion. In a post on X, Wojcicki said she was "disappointed" the company had filed for bankruptcy. "While I am disappointed that we have come to this conclusion and my bid was rejected, I am supportive of the company and I intend to be a bidder. I have resigned as CEO of the company so I can be in the best position to pursue the company as an independent bidder," she wrote. 'If I am fortunate enough to secure the company's assets through the restructuring process, I remain committed to our long-term vision of being a global leader in genetics," she added. This story was originally featured on
