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 Grace Won, KQED [with CGS' Katie Hasson] | 12.02.2025
In the U.S., it’s illegal to edit genes in human embryos with the intention of creating a genetically engineered baby. But according to the Wall Street Journal, Bay Area startups are focused on just that. It wouldn’t be the first...
By Emma Cieslik, Ms. Magazine | 11.20.2025
Several recent Biopolitical Times posts (1, 2, 3, 4) have called attention to the alarmingly rapid commercialization of “designer baby” technologies: polygenic embryo screening (especially its use to purportedly screen for traits like intelligence), in vitro gametogenesis (lab-made eggs and sperm), and heritable genome editing (also termed embryo editing or reproductive gene editing). Those three, together with artificial wombs, have been dubbed the “Gattaca stack” by Brian Armstrong, CEO of the cryptocurrency company...
By Adam Feuerstein, Stat | 11.20.2025
The Food and Drug Administration was more than likely correct to reject Biohaven Pharmaceuticals’ treatment for spinocerebellar ataxia, a rare and debilitating neurodegenerative disease. At the very least, the decision announced Tuesday night was not a surprise to anyone paying attention. Approval...
