When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority

Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium; Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network

doi:10.1016/j.jpeds.2015.09.020

When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority

Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium, Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network

Research output: Contribution to journal › Comment/debate

12 Scopus citations

Original language	English
Pages (from-to)	226-231.e1
Journal	Journal of Pediatrics
Volume	168
DOIs	https://doi.org/10.1016/j.jpeds.2015.09.020
State	Published - 1 Jan 2016

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10.1016/j.jpeds.2015.09.020

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Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium, & Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network (2016). When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority. Journal of Pediatrics, 168, 226-231.e1. https://doi.org/10.1016/j.jpeds.2015.09.020

@article{18ea6105d3d840edb34f9204d6fce832,

title = "When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority",

author = "{Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium} and {Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network} and Brothers, {Kyle B.} and Holm, {Ingrid A.} and Childerhose, {Janet E.} and Antommaria, {Armand H.M.} and Bernhardt, {Barbara A.} and Clayton, {Ellen Wright} and Gelb, {Bruce D.} and Steven Joffe and Lynch, {John A.} and McCormick, {Jennifer B.} and McCullough, {Laurence B.} and Parsons, {D. Williams} and Sundaresan, {Agnes S.} and Wolf, {Wendy A.} and Yu, {Joon Ho} and Wilfond, {Benjamin S.} and Berkman, {Benjamin E.} and Biesecker, {Leslie G.} and Hull, {Sara C.} and Sawona Biswas and Chung, {Wendy K.} and Barbara Koenig and Lehmann, {Lisa S.} and Michelle Lewis and McGuire, {Amy L.} and Slashinski, {Melody J.} and Ross, {Lainie F.} and Salama, {Joseph S.} and Debra Skinner and Tabor, {Holly K.} and Wolf, {Susan M.} and Cassandra Perry and Ariel Chandler and Beth Cobb and John Harley and Melanie Myers and Rosetta Chiavacci and John Connolly and Andy Faucett and Samantha Fetterolf and David Ledbetter and Janet Williams and Kelly Ehrlich and Malia Fullerton and Kelly Hansen and Andrea Hartzler and Aaron Scrol and Carol Horowitz and Saskia Sanderson and Randi Zinberg",

note = "Funding Information: The CSER Consortium is funded by National Human Genome Research Institute and National Cancer Institute (U01 HG006485 [Baylor College of Medicine], U01 HG006500 [Brigham and Women's Hospital], U01 HG006546 [Children's Hospital of Philadelphia], U01 HG006492 [Dana-Farber Cancer Institute], UM1 HG007301 [HudsonAlpha Institute], UM1 HG007292 [Kaiser Permanente], UM1 HG006508 [University of Michigan], U01 HG006487 [University of North Carolina], U01 HG006507 [University of Washington], R01 HG006615 [Boston Children's Hospital], R21 HG006596 [Columbia University], R01 HG006600 [Columbia University], R21 HG006613 [Children's Mercy Hospital], R21 HG006594 [Johns Hopkins University], R01 HG004500 [Mayo Clinic], R01 HG006618 [Seattle Children's Hospital], R01 CA154517 [UC - San Francisco, Mayo College of Medicine, and University of Minnesota], R21 HG006612 [Vanderbilt University and McGill University], U01 HG007307 [University of Washington serving as the Coordinating Center]). The eMERGE Network was initiated and funded by the National Human Genome Research Institute (U01HG006828 [Cincinnati Children's Hospital Medical Center/Boston Children's Hospital], U01HG006830 [Children's Hospital of Philadelphia], U01HG006389 [Essentia Institute of Rural Health], U01HG006382 [Geisinger Clinic], U01HG006375 [Group Health Cooperative/University of Washington], U01HG006379 [Mayo Clinic], U01HG006380 [Icahn School of Medicine at Mount Sinai], U01HG006388 [Northwestern University], U01HG006378 [Vanderbilt University Medical Center], and U01HG006385 [Vanderbilt University Medical Center serving as the Coordinating Center]). Funding Information: The authors would like to thank the coordinating centers of the CSER Consortium (University of Washington) and eMERGE Network (Vanderbilt University) for their support. We would like to thank Joseph Salama (University of Washington) and Mollie Bodin Claar (Vanderbilt University) who provided substantive support for this effort. Jean McEwen, JD, PhD, Joy Boyer, Nicole Lockhart, PhD, and Lucia Hindorff, PhD, MPH, all with the National Human Genome Research Institute (NHGRI), provided program staff support for this project.",

year = "2016",

month = jan,

day = "1",

doi = "10.1016/j.jpeds.2015.09.020",

language = "English",

volume = "168",

pages = "226--231.e1",

journal = "Journal of Pediatrics",

issn = "0022-3476",

publisher = "Mosby Inc.",

}

Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium & Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network 2016, 'When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority', Journal of Pediatrics, vol. 168, pp. 226-231.e1. https://doi.org/10.1016/j.jpeds.2015.09.020

When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority. / Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium; Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network.
In: Journal of Pediatrics, Vol. 168, 01.01.2016, p. 226-231.e1.

Research output: Contribution to journal › Comment/debate

TY - JOUR

T1 - When Participants in Genomic Research Grow Up

T2 - Contact and Consent at the Age of Majority

AU - Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium

AU - Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network

AU - Brothers, Kyle B.

AU - Holm, Ingrid A.

AU - Childerhose, Janet E.

AU - Antommaria, Armand H.M.

AU - Bernhardt, Barbara A.

AU - Clayton, Ellen Wright

AU - Gelb, Bruce D.

AU - Joffe, Steven

AU - Lynch, John A.

AU - McCormick, Jennifer B.

AU - McCullough, Laurence B.

AU - Parsons, D. Williams

AU - Sundaresan, Agnes S.

AU - Wolf, Wendy A.

AU - Yu, Joon Ho

AU - Wilfond, Benjamin S.

AU - Berkman, Benjamin E.

AU - Biesecker, Leslie G.

AU - Hull, Sara C.

AU - Biswas, Sawona

AU - Chung, Wendy K.

AU - Koenig, Barbara

AU - Lehmann, Lisa S.

AU - Lewis, Michelle

AU - McGuire, Amy L.

AU - Slashinski, Melody J.

AU - Ross, Lainie F.

AU - Salama, Joseph S.

AU - Skinner, Debra

AU - Tabor, Holly K.

AU - Wolf, Susan M.

AU - Perry, Cassandra

AU - Chandler, Ariel

AU - Cobb, Beth

AU - Harley, John

AU - Myers, Melanie

AU - Chiavacci, Rosetta

AU - Connolly, John

AU - Faucett, Andy

AU - Fetterolf, Samantha

AU - Ledbetter, David

AU - Williams, Janet

AU - Ehrlich, Kelly

AU - Fullerton, Malia

AU - Hansen, Kelly

AU - Hartzler, Andrea

AU - Scrol, Aaron

AU - Horowitz, Carol

AU - Sanderson, Saskia

AU - Zinberg, Randi

N1 - Funding Information: The CSER Consortium is funded by National Human Genome Research Institute and National Cancer Institute (U01 HG006485 [Baylor College of Medicine], U01 HG006500 [Brigham and Women's Hospital], U01 HG006546 [Children's Hospital of Philadelphia], U01 HG006492 [Dana-Farber Cancer Institute], UM1 HG007301 [HudsonAlpha Institute], UM1 HG007292 [Kaiser Permanente], UM1 HG006508 [University of Michigan], U01 HG006487 [University of North Carolina], U01 HG006507 [University of Washington], R01 HG006615 [Boston Children's Hospital], R21 HG006596 [Columbia University], R01 HG006600 [Columbia University], R21 HG006613 [Children's Mercy Hospital], R21 HG006594 [Johns Hopkins University], R01 HG004500 [Mayo Clinic], R01 HG006618 [Seattle Children's Hospital], R01 CA154517 [UC - San Francisco, Mayo College of Medicine, and University of Minnesota], R21 HG006612 [Vanderbilt University and McGill University], U01 HG007307 [University of Washington serving as the Coordinating Center]). The eMERGE Network was initiated and funded by the National Human Genome Research Institute (U01HG006828 [Cincinnati Children's Hospital Medical Center/Boston Children's Hospital], U01HG006830 [Children's Hospital of Philadelphia], U01HG006389 [Essentia Institute of Rural Health], U01HG006382 [Geisinger Clinic], U01HG006375 [Group Health Cooperative/University of Washington], U01HG006379 [Mayo Clinic], U01HG006380 [Icahn School of Medicine at Mount Sinai], U01HG006388 [Northwestern University], U01HG006378 [Vanderbilt University Medical Center], and U01HG006385 [Vanderbilt University Medical Center serving as the Coordinating Center]). Funding Information: The authors would like to thank the coordinating centers of the CSER Consortium (University of Washington) and eMERGE Network (Vanderbilt University) for their support. We would like to thank Joseph Salama (University of Washington) and Mollie Bodin Claar (Vanderbilt University) who provided substantive support for this effort. Jean McEwen, JD, PhD, Joy Boyer, Nicole Lockhart, PhD, and Lucia Hindorff, PhD, MPH, all with the National Human Genome Research Institute (NHGRI), provided program staff support for this project.

PY - 2016/1/1

Y1 - 2016/1/1

UR - http://www.scopus.com/inward/record.url?scp=84955636933&partnerID=8YFLogxK

U2 - 10.1016/j.jpeds.2015.09.020

DO - 10.1016/j.jpeds.2015.09.020

M3 - Comment/debate

C2 - 26477867

AN - SCOPUS:84955636933

SN - 0022-3476

VL - 168

SP - 226-231.e1

JO - Journal of Pediatrics

JF - Journal of Pediatrics

ER -

Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium, Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network. When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority. Journal of Pediatrics. 2016 Jan 1;168:226-231.e1. doi: 10.1016/j.jpeds.2015.09.020