Returning raw genomic data to research participants in a pediatric cancer precision medicine trial

In pediatric cancer precision medicine clinical trials settings, parents proactively seeking treatment and answers to causation may request return of their child's raw data and/or biospecimen. To satisfy such requests, the ZERO Childhood Cancer Program required a guidance document.

Citation:
Barlow-Stewart K, Courtney E, Cowley M, …….. Kotecha RS, Mateos MK, et al. Returning raw genomic data to research participants in a pediatric cancer precision medicine trial. npj Genom Med. 2025;10(1).

Keywords:
Children's cancers; genomics; clinical trials

Abstract:
In pediatric cancer precision medicine clinical trials settings, parents proactively seeking treatment and answers to causation may request return of their child's raw data and/or biospecimen. To satisfy such requests, the ZERO Childhood Cancer Program required a guidance document.