DNA donors must demand stronger protection for genetic privacy
By Mason Marks and Tiffany Li,
Stat News
| 05. 30. 2018
The National Institutes of Health wants your DNA, and the DNA of 1 million other Americans, for an ambitious project called All of Us. Its goal — to “uncover paths toward delivering precision medicine” — is a good one. But until it can safeguard participants’ genetic privacy, you should decline the invitation to join unless you fully understand and accept the risks.
DNA databases like All of Us could provide valuable medical breakthroughs such as identifying new disease risk factors and potential drug targets. But these benefits could come with a high price: increased risk to individuals’ genetic data privacy, something that current U.S. laws do not adequately protect.
This month, the NIH announced it was throwing open the doors to enrollment in All of Us. This comes at a time when genetic and data privacy is in the public eye. In late April, California police caught the alleged “Golden State Killer” by using an online DNA database called GEDmatch. In mid-May, the same database was used to help solve a double homicide committed in...
Related Articles
By Diaa Hadid and Shweta Desai, NPR | 01.29.2026
MUMBRA, India — The afternoon sun shines on the woman in a commuter-town café, highlighting her almond-shaped eyes and pale skin, a look often sought after by couples who need an egg to have a baby.
"I have good eggs,"...
By Roni Caryn Rabin, The New York Times | 01.22.2026
The National Institutes of Health said on Thursday it is ending support for all research that makes use of human fetal tissue, eliminating funding for projects both within and outside of the agency.
A ban instituted in June 2019 by...
By Mike McIntire, The New York Times | 01.24.2026
Genetic researchers were seeking children for an ambitious, federally funded project to track brain development — a study that they told families could yield invaluable discoveries about DNA’s impact on behavior and disease.
They also promised that the children’s sensitive...
By Phil Galewitz, NPR | 01.20.2026
Serenity Cole enjoyed Christmas last month relaxing with her family near her St. Louis home, making crafts and visiting friends.
It was a contrast to how Cole, 18, spent part of the 2024 holiday season. She was in the hospital...