Why I regret using 23andMe: I gave up my DNA just to find out I’m British; The Guardian, November 30, 2024

 Kari Paul, The Guardian; Why I regret using 23andMe: I gave up my DNA just to find out I’m British

"With the future of 23andMe in peril, the overarching question among previous customers now is what will happen to the data that has already been collected. Leuenberger noted that by entering DNA into a database, users sacrifice not only their own privacy but that of blood relatives. Because an individual’s DNA is similar in structure to that of their relatives, information about others can be gleaned from one person’s sample. This is especially pronounced with the rise of open-access DNA sites like GEDMatch, on which users can upload genetic data that can be compared to other samples. A consumer genealogy test contributed to the identification of serial killer Joseph James DeAngelo.

“What is ethically tricky with genetic data is that it’s not just about self-knowledge – it’s also knowledge about all of your relatives,” Leuenberger said. “Morally speaking, it is not necessarily information that is yours to give – and this risk is exacerbated if this company goes down and the fate of the data becomes more perilous.”"

What 23andMe Owes its Users; The Hastings Center, November 18, 2024

 Jonathan LoTempio, Jr,, The Hastings Center; What 23andMe Owes its Users

"In the intervening years, 23andMe has sent you new findings related to your health status. You wonder: Is my data protected? Can I get it back?

There are protections for users of 23andMe and other direct-to-consumer genetic testing companies. Federal laws, including the Genetic Information Nondiscrimination Act (GINA) and the Affordable Care Act, protect users from employment and insurance discrimination. Residents of certain states including California have agencies where they can register complaints. 23andMe, which is based in California, has a policy in line with California citizens’ new right to access and delete their data. European residents have even more extensive rights over their digital data.

American users can rest assured that there are strong legal mechanisms under the Committee on Foreign Investment in the U.S. that can block foreign acquisition of U.S. firms on national security grounds. For certain critical sectors like biotech, the committee may consider, among other factors, whether a proposed transaction would result in the U.S. losing its place as a global industry leader as part of its review.

Any attempt by a foreign company to acquire 23andMe would be subject to a CFIUS review and could be blocked on national security grounds, particularly if the foreign company is headquartered in a “country of special concern” such as China, Russia, or Iran. As for acquisitions by U.S. companies, the legal landscape is a bit more Wild West. Buyers based in the U.S. could change policies to which users agreed long ago, in a world rather different than ours.

November 2024: With a new board the immediate crisis at 23andMe has been averted. However, long-term concerns remain regarding potential buyers and how they might respond to 23andMe’s layoffs and shuttering of its drug development arm, both of which suggest instability of the company. 23andMe and other DTC genetic testing companies should consider what they owe their users.

One thing they owe users is to implement a policy that, in the case of a sale, the companies will notify users multiple times and in multiple ways and give them the option of deleting their data."

23andMe is on the brink. What happens to all its DNA data?; NPR, October 3, 2024

 Bobby Allyn, NPR; 23andMe is on the brink. What happens to all its DNA data?

"As 23andMe struggles for survival, customers like Wiles have one pressing question: What is the company’s plan for all the data it has collected since it was founded in 2006?

“I absolutely think this needs to be clarified,” Wiles said. “The company has undergone so many changes and so much turmoil that they need to figure out what they’re doing as a company. But when it comes to my genetic data, I really want to know what they plan on doing.”

Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World; Undark, February 24, 2022

DYNA ROCHMYANINGSIH, Undark; Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World

"Various ethics guidelines on health-related research — including UNESCO’s International Declaration on Human Genetic Data and international ethical guidelines published by the Council for International Organizations of Medical Sciences, or CIOMS, in collaboration with the World Health Organization — advise researchers to seek approval from an ethics committee in the host country. Such reviews are critical, bioethicists say, because cultural and social considerations of research ethics might vary between countries. In low-resource countries especially, ethics reviews are essential to protect the interests of participants and ensure that data are used in ways that benefit local communities.

Nowhere in Larena and Jakobsson’s paper, or in any of the subsequent publications based on the Philippines study, does the Uppsala team mention obtaining such an ethics approval in the Philippines — and Philippines officials say they never granted the team such an approval."

You Discovered Your Genetic History. Is It Worth the Privacy Risk?; Fortune, September 10, 2018

Monica Rodriguez, Fortune; You Discovered Your Genetic History. Is It Worth the Privacy Risk?

"Direct-to-consumer genetic testing companies like 23andMe must win FDA approval to send individuals medical risk findings, while companies that involve physicians in the process do not. But unlike healthcare providers, direct-to-consumer genetic testing companies are not bound by HIPPA, the law that protects the privacy of personal medical information, and there are few laws in place to regulate the privacy of genetic information obtained by these companies.

“One of the big distinctions between medical research and data in Silicon Valley is the ethical framework that requires informed consent,” said Charles Seife, a professor of journalism at New York University who writes extensively on the genetic testing industry. “It is a difference of making sure that [privacy] rights are being preserved.”"