Returning a Genomic Result for an Adult-Onset Condition to the Parents of a Newborn: Insights From the BabySeq Project
Ingrid A Holm, Amy McGuire, Stacey Pereira, Heidi Rehm, Robert C Green, Alan H Beggs, BabySeq Project Team, Pankaj B Agrawal, Alan H Beggs, Wendi N Betting, Ozge Ceyhan-Birsoy, Kurt D Christensen, Dmitry Dukhovny, Shawn Fayer, Leslie A Frankel, Casie A Genetti, Chet Graham, Robert C Green, Amanda M Gutierrez, Maegan Harden, Ingrid A Holm, Joel B Krier, Matthew S Lebo, Harvey L Levy, Xingquan Lu, Kalotina Machini, Amy L McGuire, Jaclyn B Murry, Medha Naik, Tiffany Nguyen, Richard B Parad, Hayley A Peoples, Stacey Pereira, Devan Petersen, Uma Ramamurthy, Vivek Ramanathan, Heidi L Rehm, Amy Roberts, Jill O Robinson, Serguei Roumiantsev, Talia S Schwartz, Tina K Truong, Grace E VanNoy, Susan E Waisbren, Timothy W Yu, Ingrid A Holm, Amy McGuire, Stacey Pereira, Heidi Rehm, Robert C Green, Alan H Beggs, BabySeq Project Team, Pankaj B Agrawal, Alan H Beggs, Wendi N Betting, Ozge Ceyhan-Birsoy, Kurt D Christensen, Dmitry Dukhovny, Shawn Fayer, Leslie A Frankel, Casie A Genetti, Chet Graham, Robert C Green, Amanda M Gutierrez, Maegan Harden, Ingrid A Holm, Joel B Krier, Matthew S Lebo, Harvey L Levy, Xingquan Lu, Kalotina Machini, Amy L McGuire, Jaclyn B Murry, Medha Naik, Tiffany Nguyen, Richard B Parad, Hayley A Peoples, Stacey Pereira, Devan Petersen, Uma Ramamurthy, Vivek Ramanathan, Heidi L Rehm, Amy Roberts, Jill O Robinson, Serguei Roumiantsev, Talia S Schwartz, Tina K Truong, Grace E VanNoy, Susan E Waisbren, Timothy W Yu
Abstract
The return of information from genomic sequencing in children, especially in early life, brings up complex issues around parental autonomy, the child's future autonomy, the best interest standard, and the best interests of the family. These issues are particularly important in considering the return of genomic results for adult-onset-only conditions in children. The BabySeq Project is a randomized trial used to explore the medical, behavioral, and economic impacts of integrating genomic sequencing into the care of newborns who are healthy or sick. We discuss a case in which a variant in a gene for an actionable, adult-onset-only condition was detected, highlighting the ethical issues surrounding the return of such finding in a newborn to the newborn's parents.
Conflict of interest statement
POTENTIAL CONFLICT OF INTEREST: Dr Green is co-founder, advisor, and equity holder in Genome Medical, Inc; the other authors have indicated they have no conflicts of interest to disclose.
Copyright © 2019 by the American Academy of Pediatrics.
Source: PubMed