Scientists look for clues about therapies and cures for life-threatening childhood illnesses in children's DNA -- it seems only logical to do so. But the decision as to who should have access to DNA samples from children provides a unique ethical conundrum, says a Tel Aviv University researcher in a recent publication for the esteemed journal Science, co-authored by colleagues from The Netherlands and Canada. The recommendations, which call for new policies on access to biobanked children's DNA, could shape America's legislation on the issue in the coming years.
With his co-authors, Dr. David Gurwitz, director of the National Laboratory for the Genetics of Israeli Populations (NLGIP) in the Department of Human Molecular Genetics and Biochemistry at TAU, explains that we cannot be aware today of future implications of widely distributing personal genetic information. In the wrong hands it could lead to unforeseen privacy risks. And since children cannot give consent to research on their DNA, they argue, population biobanks (including the National Children's Study planned at the U.S. National Institutes of Health) should not distribute DNA samples from children to outside researchers not before certain fail-safe checks are in place.
In-house research can be performed at the biobanks, they suggest, and the data published with sufficient protections, so that pediatric research is not seriously impaired or delayed. This approach gives maximal protections against the misuse of individual genetic data from non-consenting children, they write in Science. Additional measures could include encoding the critical data sets of polymorphic genetic sequences an argument presented recently and one which Dr. Gurwitz agrees could be among the measures for protecting the privacy of DNA donors.
Weighing society against privacy
The recommendations are not written-in-stone, Dr. Gurwitz warns, but it's important that deci
|Contact: George Hunka|
American Friends of Tel Aviv University