Please give me a copy of my child’s raw genomic data

Abstract

In this work, we explore whether raw genetic data generated during sequencing ought to be returned to a pediatric patient and/or their parents/guardians. We identify the principles used by various professional societies in their guidelines on the return of secondary findings and apply them to this new context. We conclude that since each situation is unique, decisions should be made on a case-by-case basis according to the best interests of the child.

Returning raw genomic data: rights of research participants and obligations of health care professionals

“…The literature identifies increasing requests from patients and participants for their raw genomic data, 1,2 and we are aware of national and international genomic precision medicine studies where such requests have been made. Raw genomic data comprise genomic sequence data before annotation and interpretation (Box 1).…”