Biobanks should revamp how they handle DNA from healthy children, says an international team of bioethics experts. Children whose parents have signed them up for long-term studies should not have their genetic data distributed or made public until the donors consent at an older age, says the team, which publishes its recommendations today in Science.
"Children should be able to decide, when they're mature enough, about their full or fuller involvement," says Bartha Maria Knoppers, director of the Centre of Genomics and Policy at McGill University in Montreal, Canada, and an author of the paper. If implemented, the recommendation could help protect young participants' privacy, but critics say that it is arbitrary and will hamper research into children's health.
Many large biobank projects, including the US National Children's Study and the Norwegian Mother and Child Cohort Study, are now routinely collecting biological samples from healthy newborns and children. These young participants present a unique ethical challenge. They are too young to give informed consent, so authorization is needed from parents or guardians. But they will eventually become adults who may not wish to share their DNA.
David Gurwitz, director of the National Laboratory for the Genetics of Israeli Populations at Tel-Aviv University in Israel, and lead author of the study, says that the recommendations are needed to safeguard child donors from the risks associated with revealing personal genetic data. "Don't rush into distributing the DNA samples to external researchers, because DNA is a strong, unique identifier," he says. To avoid delays in paediatric research, in-house research facilities should be built so that analyses can continue without samples leaving the biobank until adult consent is obtained, Gurwitz adds.
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