Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project
Stacey Pereira, Jill Oliver Robinson, Amanda M Gutierrez, Devan K Petersen, Rebecca L Hsu, Caroline H Lee, Talia S Schwartz, Ingrid A Holm, Alan H Beggs, Robert C Green, Amy L McGuire, BabySeq Project Group, 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 Guiterrez, 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 Schwarts, Tina K Truong, Grace E VanNoy, Susan E Waisbren, Timothy W Yu, Stacey Pereira, Jill Oliver Robinson, Amanda M Gutierrez, Devan K Petersen, Rebecca L Hsu, Caroline H Lee, Talia S Schwartz, Ingrid A Holm, Alan H Beggs, Robert C Green, Amy L McGuire, BabySeq Project Group, 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 Guiterrez, 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 Schwarts, Tina K Truong, Grace E VanNoy, Susan E Waisbren, Timothy W Yu
Abstract
Background and objectives: There is interest in applying genomic sequencing (GS) to newborns' clinical care. Here we explore parents' and clinicians' attitudes toward and perceptions of the risks, benefits, and utility of newborn GS compared with newborn screening (NBS) prior to receiving study results.
Methods: The BabySeq Project is a randomized controlled trial used to explore the impact of integrating GS into the clinical care of newborns. Parents (n = 493) of enrolled infants (n = 309) and clinicians (n = 144) completed a baseline survey at enrollment. We examined between-group differences in perceived utility and attitudes toward NBS and GS. Open-ended responses about risks and benefits of each technology were categorized by theme.
Results: The majority of parents (71%) and clinicians (51%) agreed that there are health benefits of GS, although parents and clinicians agreed more that there are risks associated with GS (35%, 70%) than with NBS (19%, 39%; all P < .05). Parents perceived more benefit and less risk of GS than did clinicians. Clinicians endorsed concerns about privacy and discrimination related to genomic information more strongly than did parents, and parents anticipated benefits of GS that clinicians did not.
Conclusions: Parents and clinicians are less confident in GS than NBS, but parents perceive a more favorable risk/benefit ratio of GS than do clinicians. Clinicians should be aware that parents' optimism may stem from their perceived benefits beyond clinical utility.
Trial registration: ClinicalTrials.gov NCT02422511.
Conflict of interest statement
POTENTIAL CONFLICT OF INTEREST: Dr Green is a cofounder, advisor, and equity holder in Genome Medical, Inc; the other authors have indicated they have no potential conflicts of interest to disclose.
Copyright © 2019 by the American Academy of Pediatrics.
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Source: PubMed