23 and me It’s not going well. The company’s stock is at risk of being delisted. The company closed its in-house drug development division last month, just the latest in a series of job cuts. last week, Entire board of directors All but co-founder and company CEO Anne Wojcicki are leaving. In this downward spiral, Wojcicki said She will consider selling 23andMe. That means the DNA of 23andMe’s 15 million customers will also be up for sale.
23andMe’s trove of genetic data may be its most valuable asset. In the nearly 20 years since human genome analysis became rapid and commonplace, DNA A’s, C’s, G’s, and T’s have linked estranged relatives, uncovered family secrets, and helped police catch serial killers. It has been helpful. Some people’s genomes may also contain clues to what is making them sick. sometimeshow their illnesses should be treated. But for most of us, consumer testing doesn’t have much to offer beyond a snapshot of our ancestral roots and confirmation of traits we already know. (Yes, 23andMe, my eyes teeth Blue. ) 23andMe is in trouble, in part because it hasn’t been able to prove the value of collecting all sensitive personal information. Potential buyers may also have very different ideas about how to use your company’s DNA data to make your company more profitable. This should be of concern to anyone who has used the service.
DNA may contain health information, but unlike a doctor’s office, 23andMe is not bound by the health privacy law HIPAA. and the company’s Privacy policy In the event of a merger or acquisition, we make it clear that customer information is a salable asset. 23andMe has promised to ask customers’ permission before using their data for research and targeted advertising, but that doesn’t mean the next owner will do the same. It says so in the fine print. We reserve the right to update our policy at any time. A spokesperson acknowledged to me this week that the company cannot fully guarantee the security of customer data, but said in a statement that “any scenario that impacts customer data must be carefully considered.” said. We take your privacy and trust very seriously and are committed to upholding the commitments set forth in our Privacy Statement. ”
specific party There may be obvious interest in the secrets of the American genome. For example, your insurance company will probably want to know about any genetic predispositions that might make your premiums higher. In the United States, 2008 Act A law called the Genetic Information Nondiscrimination Act prevents discrimination by employers and health insurance companies based on genetic data; the gap in it Exempts providers of life, disability, and long-term care insurance from such limitations. That means, for example, if you have a genetic marker that can be correlated with heart disease, your life insurance company will find out and legally deny you a policy, even if you don’t actually develop heart disease. That means there is a possibility. Law enforcement relies on DNA data to solve many difficult cases, and 23andMe says it requires a warrant to share the data. some other companies allowed Broader access to police. You don’t have to commit a crime to be affected. Because we share a large portion of our genome with our relatives, your DNA could be used to implicate your next of kin and even third cousins you’ve never met. Information about your ethnicity is also highly sensitive, and it too is encoded in your genome. That is, in 2020, the US military advised Employees oppose the use of consumer tests.
It is impossible to detail all the possible consequences if an unknown person gains access to your DNA. This is because scientists’ understanding of the genome is still evolving. Imagine a pharmaceutical company trawling your genome to see what diseases you’re at risk for and then targeting you with ads for drugs to treat it. “There are many possibilities for this data to be misused and used in ways that consumers could not have anticipated when they first purchased 23andMe,” said Suzanne Bernstein, general counsel at the Electronic Privacy Information Center. told me. And unlike passwords, which can be changed after a breach, DNA remains forever once it’s out there.
In some states, California, etc. It could give consumers additional genetic privacy rights and allow them to delete their DNA data before it is sold. “Customers can download their data or delete their personal accounts,” a 23andMe spokesperson said. Companies are also required to notify customers of changes to their terms of service and give them an opportunity to opt-out, but such changes typically occur within a certain amount of time, regardless of whether they read the fine print or not. It will be automatically enabled after .
Consumers have assumed this risk without receiving much in return. When the first draft of the human genome was released, it was touted as a panacea, and hidden within its coded secrets was a panacea that would help each of us unlock our individual health plans. but most diseasesIt turns out that it cannot be pinned down to a single gene. And most people have boring genomes with no red flag mutations. So DNA data is just that: DNA data. Isn’t that helpful? For them, at least in this form. Also, if your DNA test shows you’re at higher risk for more common health conditions, such as diabetes or heart disease, you’ll probably want to take steps to help you eat better, exercise more often, and get a good eight hours of sleep. You probably already know that. (For insurance companies, however, even the slightest risk can make a person an unattractive candidate for insurance.) That’s probably a big reason why 23andMe’s sales have fallen. Few people want to know about their Swedish ancestry, and that turns out to be the biggest selling point of consumer DNA testing.
Wojcicki previously pulled 23andMe from the brink after the Food and Drug Administration ordered the company to do so. stop selling Health tests were conducted in 2013 until safety and effectiveness were proven. In recent months, Mr. Wojcicki has explored various options to save the company, including a spin-off that would separate the cash-intensive pharmaceutical business from the consumer side. Wojcicki is still showing interest She herself tried to take the company private, but the board rejected her initial offer. 23andMe will be delisted if it does not raise its stock price to at least $1 by November 4th. As that date approaches, a sale, whether by Wojcicki or someone else, is looking increasingly likely.
The risk of DNA data being misused has existed since DNA testing first became available. When a customer opts in to participate in a drug development study, third parties can access their already anonymized DNA data. tied to people’s identity in the end. Additionally, 23andMe has failed to protect customer information in the past and just agreed to pay up. $30 million To resolve litigation arising from the October 2023 data breach. But the company has had an incentive to keep customer data private for nearly two decades. 23andMe is a consumer-facing business, and they also needed to earn trust in order to sell the kits. Not everyone who buys a company’s data operates under the same constraints.
