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 Katherine Long, Ben Foldy, and Lingling Wei, The Wall Street Journal | 12.13.2025
Inside a closed Los Angeles courtroom, something wasn’t right.
Clerks working for family court Judge Amy Pellman were reviewing routine surrogacy petitions when they spotted an unusual pattern: the same name, again and again.
A Chinese billionaire was seeking parental...
By Sarah Kliff, The New York Times | 12.10.2025
Micah Nerio had known since his early 30s that he wanted to be a father, even if he did not have a partner. He spent a decade saving up to pursue surrogacy, an expensive process where he would create embryos...
By Carter Sherman, The Guardian | 12.08.2025
A huge defense policy bill, revealed by US lawmakers on Sunday, does not include a provision that would have provided broad healthcare coverage for in vitro fertilization (IVF) for active-duty members of the military, despite Donald Trump’s pledge...
By Vardit Ravitsky, The Hastings Center | 12.04.2025
Embryo testing is advancing fast—but how far is too far? How and where do we draw the line between preventing disease and selecting for “desirable” traits? What are the ethical implications for parents, children, clinicians, and society at large? These...
