Tel Aviv University researcher: Kids’ right-to-privacy for their genetic material needs better protection
Tel Aviv University announces a researcher’s recent article in Science (Children and Population Biobanks, which is behind a pay wall) concerning the privacy of children’s DNA. (In July, the Washington Post had a story on the privacy of newborn children’s DNA, noting that sometimes the medical data is collected and retained without parents’ knowledge or consent. The data collection is done when children are born in hospitals. I’ve written before about how quickly a database, full of information originally collected for medical and research purposes, could be morphed into a national DNA system that law enforcement officials could tap without needing to get a warrant.)
With his co-authors [from The Netherlands and Canada], 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. […]
“There are many new initiatives for children’s biobanks taking place all around the world now, from the U.S. to China, yet we feel that not enough attention is being paid to addressing what could be serious concerns for the future privacy of participating children,” he adds.