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International Team Proposes New Policies for Population Biobanks Involving Children

NEW YORK (GenomeWeb News) – An international team is calling for new policies for — and a cautious approach to — using genetic samples and information collected from children in population biobanks.

In a perspectives paper appearing online today in Science, researchers and bioethicists from Israel, the Netherlands, and Canada argued that population biobanks should be able to continue collecting and analyzing DNA samples and other data from children. But they recommended implementing policies that would prevent these biobanks from sharing DNA samples or genetic information with groups outside of the biobank — at least until the individuals involved are old enough to give their own consent as adults.

The team advocates this conservative approach to population biobanks involving children because it's unclear what effects these resources could have on child participants in the future and whether such research will conflict with their beliefs as adults, senior author Bartha Maria Knoppers, director of McGill University's Centre of Genomics and Policy, told GenomeWeb Daily News.

In general, population biobanks accumulate human DNA, tissue samples, cell lines, and other types of data into a resource that can be used for biomedical research. Several very large biobanks have been developed or proposed, including the UK Biobank — which aims at collecting information on half a million British adults — as well as biobanks in the US, Canada, Ireland, Norway, the Netherlands, Denmark, and China.

But with some biobanks collecting information on both parents and their children and/or turning their focus to longitudinal databases that involve samples collected during childhood, Knoppers and her co-authors decided to address ethical issues that could stem from biobanking with children.

Such issues were of particular interest because some of the authors have been involved in the not-for-profit Public Population Project in Genomics, Knoppers explained, and have been working towards harmonizing various population biobanks.

"Children are a vulnerable research population in the sense that they lack the capacity for consenting to their participation," Knoppers and her co-authors wrote. This is particularly true when it comes to DNA samples, they explained, because each person's genetic code "remains unique as a permanent identifier throughout life" — meaning samples collected from children could have unforeseen consequences for the individuals when they are older.

"As sequencing of entire genomes becomes a routine procedure, DNA donors' privacy can never be completely ensured within biobanks," the authors continued. "As a consequence, there is not true 'opting out' from biobanks once DNA sequences have been published and deposited with public databases."

That has the team calling for safeguards both for collecting and sharing children's DNA samples and genetic information, to protect children from future hurdles, including types of discrimination not covered by legislation such as the US Genetic Information Nondiscrimination Act, passed last year.

The group suggests implementing biobank policies that would limit the use of samples collected in childhood. In particular, they propose measures by which population biobanks would be able to continue collecting and assessing DNA and phenotypic data from children but would not be allowed to share genetic samples or data with groups outside the biobank itself until the individuals concerned are old enough to give their own consent. "It's not restrictive, it's cautious," Knoppers said.

Though the authors conceded that such policies may not be feasible under all circumstances or may be viewed by some as restrictive to research, they contend that the approach would not hinder research in the long run. Instead, they noted that "[t]he long-term benefits of maintaining public trust in biomedical research by waiting for participating children to consent as adults justify extra governance efforts and added costs."

Nevertheless, Knoppers and her co-authors drew a clear distinction between population biobanks and disease-specific biobanks or studies involving children. Because the latter could potentially contribute to a child's treatment or diagnosis, or may affect other family members, they suggest that sample and data sharing remain more open for disease-related research than for population biobanks in general.

"We propose that disease-specific biobanks — in particular, when dedicated to childhood diseases and disabilities — should continue to collect and share children's DNA samples and data within the limits authorized by parents and bound by continuous oversight, including ethics review."

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