Experts say that young ones should give their consent

Aug 14, 2009 08:45 GMT  ·  By
Experts argue that ethics rules are required for DNA data harvested from young and newborn children
   Experts argue that ethics rules are required for DNA data harvested from young and newborn children

The regulations should specifically refer to DNA samples collected from healthy children, whose parents have signed them up for long-term studies, leading ethics experts say. The data should not be made public, and released in the scientific community until the children reach an age when they can give their consent for this to happen. The recommendations appear in yesterday's (August 13th) issue of the respected journal Science, Nature News informs.

“Children should be able to decide, when they're mature enough, about their full or fuller involvement,” explains the McGill University Center of Genomics and Policy director Bartha Maria Knoppers, from Montreal, Canada. She is also one of the authors of the new paper.

The expert believes that the new set of measures would help protect the privacy of children around the world who are involved in long-term studies. However, not everyone is pleased with the new proposals. Some say that the method is arbitrary, and that it could compromise the results of many long-term studies. And, because a lot of resources are invested in such research, that's a measure that experts cannot afford to take.

According to Knoppers, some of the largest biobanks in the world today, including the National Children's Study in the United States and the Mother and Child Cohort Study, in Norway, have been created, and are now growing thanks to biological samples collected from newborn babies and children in hospitals. But the ethical challenge is unlike any other. While parents and guardians may give their consent for the collection of samples, the children are too small to do the same thing, and, as adults, they may not be that willing to share their DNA data with the world.

“Don't rush into distributing the DNA samples to external researchers, because DNA is a strong, unique identifier,” says David Gurwitz, who is the director of the National Laboratory for the Genetics of Israeli Populations, with the Tel-Aviv University. He says that the risks associated with revealing personal genetic data have to far reaching implications for children to be distributed freely even among scientists. “It can be expensive to put these safeguards in place, but I think we really need to look at them if we're going to enroll children,” adds Joan Scott, the deputy director of the Washington, DC-based Genetics and Public Policy Center.

“The reality is we're going into a world where that DNA is going to be available, and the protections we need are the legal protections,” argues the director of the Dartmouth College Ethics Institute, in Hanover, New Hampshire, Ronald Green. According to a recent survey, almost 67 percent of all people who have had their DNA records inserted into large data banks wouldn't mind experts using them when they become adults, even if they are not contacted for permission.