Newborn genomic sequencing (nGS) has great potential to improve pediatric care. Parental interest and concerns about genomics are relatively unexplored. Understanding why parents decline research consent for nGS may reveal implementation barriers.


We evaluated parental interest in a randomized trial of nGS in well-baby and intensive care unit nursery settings. Interested families attended an informational enrollment session (ES) with a genetic counselor prior to consenting. Reason(s) for declining participation and sociodemographic associations were analyzed.


Of 3860 eligible approached families, 10% attended ES, 67% of whom enrolled. Of 1760 families queried for decline reasons, 58% were uninterested in research. Among 499 families considering research, principal reasons for decline prior to ES included burdensome study logistics (48%), feeling overwhelmed postpartum (17%), and lack of interest/discomfort with genetic testing (17%). Decliners after ES more often cited concerns about privacy/insurability (41%) and uncertain/unfavorable results (23%).


Low interest in research and study logistics were major initial barriers to postpartum enrollment and are likely generic to many postpartum research efforts. Concerns over privacy and result implications were most commonly cited in decliners after ES. Understanding parental concerns around research nGS may inform future integration of nGS into newborn screening, predictive testing, and pediatric diagnostics.

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The authors thank the families and clinicians for their participation in the BabySeq Project. Special thanks to the current and former research assistants, genetic counselors, and research nurses involved in the BabySeq Project recruitment at Brigham and Women's Hospital, Boston Children’s Hospital, and Massachusetts General Hospital. This work was supported by grants U19 HD077671 and R01 HD075802 from the National Institute of Child Health and Human Development and National Human Genome Research Institute of the National Institutes of Health, as well as by the Manton Center for Orphan Disease Research of Boston Children’s Hospital.

Author information


  1. Division of Genetics and Genomics and The Manton Center for Orphan Disease Research, Boston Children’s Hospital, Boston, Massachusetts, USA

    • Casie A. Genetti MS
    • , Talia S. Schwartz BA
    • , Grace E. VanNoy MS
    • , Pankaj B. Agrawal MD, MMSc
    • , Ingrid A. Holm MD, MPH
    • , Susan E. Waisbren PhD
    • , Timothy W. Yu MD, PhD
    •  & Alan H. Beggs PhD
  2. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA

    • Jill O. Robinson MA
    • , Devan Petersen MPH
    • , Stacey Pereira PhD
    • , Hayley A. Peoples MPH
    •  & Amy L. McGuire JD, PhD
  3. Department of Medicine, Division of Genetics, Brigham and Women’s Hospital, Boston, Massachusetts, USA

    • Shawn Fayer MSc, MS
    • , Wendi N. Betting BS
    • , Robert C. Green MD, MPH
    •  & Richard B. Parad MD, MPH
  4. Harvard Medical School, Boston, Massachusetts, USA

    • Pankaj B. Agrawal MD, MMSc
    • , Ingrid A. Holm MD, MPH
    • , Susan E. Waisbren PhD
    • , Timothy W. Yu MD, PhD
    • , Robert C. Green MD, MPH
    • , Alan H. Beggs PhD
    •  & Richard B. Parad MD, MPH
  5. Division of Newborn Medicine, Boston Children’s Hospital, Boston, Massachusetts, USA

    • Pankaj B. Agrawal MD, MMSc
  6. The Broad Institute of MIT and Harvard, Cambridge, Massachusetts, USA

    • Timothy W. Yu MD, PhD
    •  & Robert C. Green MD, MPH
  7. Department of Pediatric Newborn Medicine, Brigham and Women’s Hospital, Boston, MA, USA

    • Richard B. Parad MD, MPH


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  1. The BabySeq Project Team

Conflict of interest

Dr. Green receives compensation for speaking or consultation from AIA, Helix, and Veritas; and is cofounder, advisor, and equity holder in Genome Medical, Inc. The other authors declare no conflict of interest.

Corresponding author

Correspondence to Richard B. Parad MD, MPH.

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