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.
Read more in Nature.
So critics think that their judgment on the importance of some research outweighs the individual’s right to privacy and to control access to their data? I think not.