The risks of sharing your DNA with online companies aren’t a future concern. They’re here now
By Nila Bala,
Los Angeles Times
| 10. 21. 2024
Turmoil at 23andMe, a company offering popular at-home DNA testing, has upset the industry. Following the resignation of every independent member of the company’s board of directors, its chief executive, Anne Wojcicki, expressed openness to selling the company and its database of around 15 million customers, raising concerns about the misuse of genetic data.
Although Wojcicki has since said she is focused on taking 23andMe private, the data-sharing risks raised by DNA testing and matching companies are already here. A class-action lawsuit filed in August alleges that the operator of GEDmatch.com, a genealogy site that claims to have a database of more than 1 million members, has been sharing users’ information with Facebook. This revelation should alarm us all.
GEDmatch stands apart from companies such as 23andMe. It’s an open, crowdsourced database that anyone can search. Founded in 2010, it emerged as a tool for genealogy enthusiasts to upload DNA results and connect with relatives. It gained notoriety when law enforcement officials announced in 2018 that they had used the service to identify the Golden State...
Related Articles
By Annika Inampudi, Science | 08.01.2025
In June, Sara* received a message asking whether she wanted to continue to participate in a massive, multicenter research project led by scientists at Aarhus University in Denmark. The iPsych study, the message said, had sequenced her genetic data from...
The Center for Genetics and Society is delighted to recommend the current edition of GMWatch Review – Number 589. UK-based GMWatch, a long-standing ally, was founded in 1998 by Jonathan Matthews as an independent organization seeking to counter the enormous corporate political power and propaganda of the GMO industry and its supporters. Matthews and Claire Robinson are its directors and managing editors.
CGS works to ensure that social justice, equity, human rights, and democratic governance are front...
By Katherine Drabiak, Journal of Medical Ethics Forum | 08.07.2025
Adapted from Mitochondrial DNA at
National Human Genome Research Institute
Recently, media outlets around the world have been reporting on children born from pronuclear genome transfer (sometimes called “3-parent IVF,” “mitochondrial donation” or “mitochondrial replacement therapy”) at Newcastle Fertility Center...
By Annika Inampudi, Science | 07.10.2025
Before a baby in the United States reaches a few days old, doctors will run biochemical tests on a few drops of their blood to catch certain genetic diseases that need immediate care to prevent brain damage or other serious...