Parental interest in genomic sequencing of newborns

enrollment experience from the BabySeq Project

The BabySeq Project Team

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Purpose: 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. Methods: 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. Results: 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%). Conclusion: 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.

Original languageEnglish (US)
JournalGenetics in Medicine
DOIs
StateAccepted/In press - Jan 1 2018

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Newborn Infant
Postpartum Period
Research
Privacy
Pediatrics
Nurseries
Genetic Testing
Genomics
Intensive Care Units
Emotions
Parents

Keywords

  • Consent for genomic testing
  • Genomic sequencing
  • Newborn
  • Newborn screening
  • Parental concerns

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Parental interest in genomic sequencing of newborns : enrollment experience from the BabySeq Project. / The BabySeq Project Team.

In: Genetics in Medicine, 01.01.2018.

Research output: Contribution to journalArticle

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title = "Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project",
abstract = "Purpose: 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. Methods: 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. Results: 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{\%}). Conclusion: 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.",
keywords = "Consent for genomic testing, Genomic sequencing, Newborn, Newborn screening, Parental concerns",
author = "{The BabySeq Project Team} and Genetti, {Casie A.} and Schwartz, {Talia S.} and Robinson, {Jill O.} and VanNoy, {Grace E.} and Devan Petersen and Stacey Pereira and Shawn Fayer and Peoples, {Hayley A.} and Agrawal, {Pankaj B.} and Betting, {Wendi N.} and Holm, {Ingrid A.} and McGuire, {Amy L.} and Waisbren, {Susan E.} and Yu, {Timothy W.} and Green, {Robert C.} and Beggs, {Alan H.} and Parad, {Richard B.} and Agrawal, {Pankaj B.} and Beggs, {Alan H.} and Betting, {Wendi N.} and Ozge Ceyhan-Birsoy and Christensen, {Kurt D.} and Dmitry Dukhovny and Shawn Fayer and Frankel, {Leslie A.} and Genetti, {Casie A.} and Chet Graham and Green, {Robert C.} and Gutierrez, {Amanda M.} and Maegan Harden and Holm, {Ingrid A.} and Krier, {Joel B.} and Lebo, {Matthew S.} and Levy, {Harvey L.} and Xingquan Lu and Kalotina Machini and McGuire, {Amy L.} and Murry, {Jaclyn B.} and Medha Naik and Nguyen, {Tiffany T.} and Parad, {Richard B.} and Peoples, {Hayley A.} and Stacey Pereira and Devan Petersen and Uma Ramamurthy and Vivek Ramanathan and Rehm, {Heidi L.} and Amy Roberts and Robinson, {Jill O.} and Serguei Roumiantsev",
year = "2018",
month = "1",
day = "1",
doi = "10.1038/s41436-018-0105-6",
language = "English (US)",
journal = "Genetics in Medicine",
issn = "1098-3600",
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T1 - Parental interest in genomic sequencing of newborns

T2 - enrollment experience from the BabySeq Project

AU - The BabySeq Project Team

AU - Genetti, Casie A.

AU - Schwartz, Talia S.

AU - Robinson, Jill O.

AU - VanNoy, Grace E.

AU - Petersen, Devan

AU - Pereira, Stacey

AU - Fayer, Shawn

AU - Peoples, Hayley A.

AU - Agrawal, Pankaj B.

AU - Betting, Wendi N.

AU - Holm, Ingrid A.

AU - McGuire, Amy L.

AU - Waisbren, Susan E.

AU - Yu, Timothy W.

AU - Green, Robert C.

AU - Beggs, Alan H.

AU - Parad, Richard B.

AU - Agrawal, Pankaj B.

AU - Beggs, Alan H.

AU - Betting, Wendi N.

AU - Ceyhan-Birsoy, Ozge

AU - Christensen, Kurt D.

AU - Dukhovny, Dmitry

AU - Fayer, Shawn

AU - Frankel, Leslie A.

AU - Genetti, Casie A.

AU - Graham, Chet

AU - Green, Robert C.

AU - Gutierrez, Amanda M.

AU - Harden, Maegan

AU - Holm, Ingrid A.

AU - Krier, Joel B.

AU - Lebo, Matthew S.

AU - Levy, Harvey L.

AU - Lu, Xingquan

AU - Machini, Kalotina

AU - McGuire, Amy L.

AU - Murry, Jaclyn B.

AU - Naik, Medha

AU - Nguyen, Tiffany T.

AU - Parad, Richard B.

AU - Peoples, Hayley A.

AU - Pereira, Stacey

AU - Petersen, Devan

AU - Ramamurthy, Uma

AU - Ramanathan, Vivek

AU - Rehm, Heidi L.

AU - Roberts, Amy

AU - Robinson, Jill O.

AU - Roumiantsev, Serguei

PY - 2018/1/1

Y1 - 2018/1/1

N2 - Purpose: 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. Methods: 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. Results: 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%). Conclusion: 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.

AB - Purpose: 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. Methods: 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. Results: 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%). Conclusion: 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.

KW - Consent for genomic testing

KW - Genomic sequencing

KW - Newborn

KW - Newborn screening

KW - Parental concerns

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U2 - 10.1038/s41436-018-0105-6

DO - 10.1038/s41436-018-0105-6

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SN - 1098-3600

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