States Are Toughening Up Privacy Laws for At-Home DNA Tests
By Emily Mullin,
Wired
| 10. 21. 2021
IF YOU’VE EVER spit into a plastic tube or swabbed your cheek and mailed your saliva away to learn about your ancestry or health risks, you might have assumed that the company analyzing your DNA is legally required to keep your genetic data private. But you’d be wrong.
The Health Insurance Portability and Accountability Act, known as HIPAA, protects individuals’ medical information when it's handled by doctors, hospitals, and health insurance companies. This applies to genetic tests ordered by your doctor but not to those you can buy online directly from companies like 23andMe and Ancestry because these kits aren’t considered medical tests. As a result, the companies have largely operated in a legal gray area. Firms write their own privacy policies that customers agree to when they purchase a kit, but the companies can change these policies at any time.
That’s a problem, since genetic data can reveal all sorts of sensitive information about you—your ethnicity, your family connections, and even your likelihood of developing Alzheimer’s disease or certain cancers. Law enforcement officers are increasingly using consumer...
Related Articles
By Margaux MacColl, The San Francisco Standard | 09.17.2025
Designer babies are coming soon to an IVF clinic near you.
Nucleus Genomics, founded by Kian Sadeghi in 2020, when he was just 20, got its start analyzing genomes to weigh a person’s risk of everything from cancer to ADHD...
By Johana Bhuiyan, The Guardian | 09.23.2025
In March 2021, a 25-year-old US citizen was traveling through Chicago’s Midway airport when they were stopped by US border patrol agents. Though charged with no crime, the 25-year-old was subjected to a cheek swab to collect their DNA, which...
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...