Proposals for revised biobank policies on children

24 August 2009

A paper in Science has called for a revision of policy with respect to the use of biological samples and data from children in biobank projects. Some (though by no means all) biobanks include samples from children, often collected at the same time as their parents, as a resource for long-term studies on genetic and environmental factors affecting health and development. The authors of the paper argue that children are a vulnerable research population, lacking the capacity for consent to participation in such projects, but who will in time become adults able to understand them. Their concern is that biobank subjects enrolled as children will not have a genuine option to opt-out on adulthood, because ‘privacy can never be completely ensured within biobanks’ and that DNA samples could be used to identify subjects in later life [Gurwitz D et al. (2009) Science 325(5942):818-9].

They propose a more cautious approach to the use of samples from children, notably measures to prevent biobanks from sharing these samples or linked data with other researchers until the corresponding children attain adulthood and are able to grant or withhold suitably informed consent for the use of their samples. Before then, for example, some general information might be made available about genetic variants affecting health, but without disclosure of the specific DNA sequences involved, although the benefit of such limited information to other researchers would be questionable.

Importantly, these recommendations are directed solely towards population biobank resources; since disease-specific research projects and databases could offer potential benefits to participating children and their families, consent from parents is proposed to be adequate to authorise normal sharing of data in these cases.

The paper acknowledges that the proposed policy amendments ‘may negatively impact research’, but suggests that the additional expense and inconvenience would be justified by improved public trust in biomedical research. Senior author Dr Bartha Knoppers, newly appointed director of McGill University's Centre for Genomics and Policy in Canada, reportedly said of this approach: "It's not restrictive, it's cautious” (see GenomeWeb news). 

Comment: The authors seek to protect the rights of children by avoiding any risk of the effectively irreversible disclosure of potentially personally identifiable information (in the form of DNA samples or sequence information) before they are of an age to give consent; they note that ‘a child whose DNA sample is donated by her parents today and distributed over the next few decades for research projects around the world can potentially be in the public eye decades later’. Since concerns about privacy and security of data are very important for adult participants in biobanks, caution is certainly a laudable approach when considering the interests of children – although there is always the possibility that the proposed restrictions could in fact erode rather than maintain public trust in biomedical research, by implying that data is less secure than it actually is.

More from us