If we don’t own our genes, what protects study subjects in genetic research?
By Leslie E. Wolf, Erin Fuse Brown, and Laura Beskow,
The Conversation
| 03. 28. 2016
On February 25, the White House hosted a forum on the National Institute of Health’s Precision Medicine Initiative. This is an ambitious research study that aims to develop targeted drugs and treatments that would vary from individual to individual.
To reach the goal of eventually being able to make specific recommendations for patients based on their own combination of genes, environment and lifestyle, researchers plan to collect that kind of information from one million Americans. The study is so large so results can account for diversity among Americans with respect to factors such as ancestry, geography, and social and economic circumstances.
At the forum, President Obama remarked “I would like to think that if somebody does a test on me or my genes, that that’s mine.”
Lots of people would make that same assumption – it seems sensible that we would each “own” our genetic information. But the legal reality is quite different. And that could turn out to be a problem, because research projects like the Precision Medicine Initiative rely on research participants trusting that their...
Related Articles
By Hamed Aleaziz, The New York Times | 08.13.2026
Immigrants at Ellis Island undergoing a medical inspection | Photo by The New York Public Library on Unsplash
In 1924, Congress sent a message to the world: We are no longer ready to take “your tired, your poor, your huddled...
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...
