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.”

Your DNA is a valuable asset, so why give it to ancestry websites for free?; The Guardian, February 16, 2020

Laura Spinney, The Guardian; Your DNA is a valuable asset, so why give it to ancestry websites for free?

"The announcement by 23andMe, a company that sells home DNA testing kits, that it has sold the rights to a promising new anti-inflammatory drug to a Spanish pharmaceutical company is cause for celebration. The collected health data of 23andMe’s millions of customers have potentially produced a medical advance – the first of its kind. But a few weeks later the same company announced that it was laying off workers amid a shrinking market that its CEO put down to the public’s concerns about privacy.

These two developments are linked, because the most intimate data we can provide about ourselves – our genetic make-up – is already being harvested for ends we aren’t aware of and can’t always control. Some of them, such as better medicines, are desirable, but some of them should worry us...

These are the privacy concerns that may be behind layoffs, not only at 23andMe, but also at other DTC companies, and that we need to resolve urgently to avoid the pitfalls of genetic testingwhile [sic] realising its undoubted promise. In the meantime, we should all start reading the small print."

Maths and tech specialists need Hippocratic oath, says academic; The Guardian, August 16, 2019

Ian Sample, The Guardian; Maths and tech specialists need Hippocratic oath, says academic

"“We need a Hippocratic oath in the same way it exists for medicine,” Fry said. “In medicine, you learn about ethics from day one. In mathematics, it’s a bolt-on at best. It has to be there from day one and at the forefront of your mind in every step you take.”...

The genetics testing firm 23andMe was a case in point, she said.

“We literally hand over our most private data, our DNA, but we’re not just consenting for ourselves, we are consenting for our children, and our children’s children. Maybe we don’t live in a world where people are genetically discriminated against now, but who’s to say in 100 years that we won’t? And we are are paying to add our DNA to that dataset.”"

Your DNA Is Not Your Culture; The Atlantic, September 25, 2018

Sarah Zhang, The Atlantic; Your DNA Is Not Your Culture

"DNA, these marketing campaigns imply, reveals something essential about you. And it’s working. Thanks to television-ad blitzes and frequent holiday sales, genetic-ancestry tests have soared in popularity in the past two years. More than 15 million people have now traded their spit for insights into their family history.

If this were simply about wearing kilts or liking Ed Sheeran, these ads could be dismissed as, well, ads. They’re just trying to sell stuff, shrug. But marketing campaigns for genetic-ancestry tests also tap into the idea that DNA is deterministic, that genetic differences are meaningful. They trade in the prestige of genomic science, making DNA out to be far more important in our cultural identities than it is, in order to sell more stuff.

First, the accuracy of these tests is unproven (as detailed here and here). But putting that aside, consider simply what it means to get a surprise result of, say, 15 percent German. If you speak no German, celebrate no German traditions, have never cooked German food, and know no Germans, what connection is there, really? Cultural identity is the sum total of all of these experiences. DNA alone does not supersede it."

Open Access: On Learning I Won’t Die Of My Grandmother’s Disease; The Georgetown Voice, April 7, 2018

Rebecca Zaritsky, The Georgetown Voice; Open Access: On Learning I Won’t Die Of My Grandmother’s Disease

[Kip Currier: This past week's Information Ethics course module explored and reflected on the pluses and minuses of DNA testing. This article is a thought-provoking first-person account of one person's 23andMe DNA test results.

The author raises some positive aspects of genetic testing, as well as some potential downsides. She offers a "go-between" strategy for mitigating those possible impacts, concluding that "It’s not fair to the patients to expose them to information without an explanation."

Lots of practical challenges and legal and ethical questions are raised by the writer's suggested remedy though, regarding who, when, and how someone would make the grey decisions about what constitutes "serious medical information that affects the individual’s life" and what constitutes "non-medical or “trivia” information". Who would bear responsibility for making these "tough calls"? Who or what entities would be charged with oversight and enforcement?

No easy answers. But the author raises important questions for  law- and policymakers, ethicists, and consumers about the implications of this increasingly touted technology and information tool.]

"The results were, generally speaking, good news. A gene for hypertension doesn’t scare me, and if I die of heart disease, at least I’ll still die as me. I was excited, intrigued, and overall relaxed by what I found. In hindsight, I’m only sorry I waited so long.

Still, what if that hadn’t been my experience? What if I did have copies of APOE4, or a mutation in a familial Alzheimer’s gene, or another disorder that nothing could be done about? I could have found out some serious, life-changing information for only $10 and a couple of clicks. Would I have been able to deal with that? I can’t say for certain. Not everyone who does these tests will have the same outcome as I will, and some will undoubtedly find information they weren’t prepared for and didn’t want. If I found out I had a mutation in BRCA, a gene conferring a high-risk for breast cancer, would I have spent my whole life worrying?

More commonly, there’s the potential for misinterpretation."

An Ethics for the Future of Genetic Testing; Atlantic, 12/30/13

Sara Hendren, Atlantic; An Ethics for the Future of Genetic Testing: "The available prenatal testing technologies for expectant parents are constantly changing in dramatic and subtle ways, and 2013 saw its share of those changes. These tests are tricky territory, especially when it comes to genetic screening. What can these technologies reliably offer to those anxiously hoping for news of a healthy, “normal” fetus? 23andMe caused an uproar this year when it patented a “designer baby” platform, even while it disavowed any intention to develop it. It’s still just an idea—by a company whose services have temporarily been suspended by the FDA—but it sparked plenty of bioethical hand-wringing about the lurking dystopian future it threatens... Bioethical debates have accompanied this technology, too: If genetic information is available at such an early point in a pregnancy, prospective parents can more privately choose to selectively abort a fetus based on genetic traits alone."