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 Anna Collinson and Jo Adnitt, BBC | 08.18.2026
At least 30 children, most of them British, are feared to have been conceived by IVF treatment in northern Cyprus using the wrong sperm or egg donors.
In each case, the parents suspect they did not get the donors they...
What We Inherit by Sam Trejo and Daphne O. Martschenko; and Original Sin by Kathryn Paige Harden have a great deal in common, with substantial differences in style and emphasis. Both books attempt, in different ways, to show the reader just where current research into human genomics stands, where that might be going, and why the authors are interested. In short, the influence of genomic research on our societies is already large and seems likely to change them in ways...
By Dan Falk, Nautilus | 08.20.2026
The pseudoscience of eugenics, founded on the mistaken notion that nature envisions some “right” combination of genes, and that selective breeding can improve the human race, is making a comeback. While the heyday of eugenics was a century ago, the...
By Emily Packard Dawson and Lainie Friedman Ross, MedPage Today | 08.18.2026
Few things evoke a greater sense of desperation than a parent seeking an experimental treatment for their child. That desperation can make even extraordinary risks seem worth taking. This dynamic has come into stark relief after Mei, a 6-year-old girl...