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 › peer-review

9 Scopus citations

Original language	English (US)
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 - Jan 1 2016

All Science Journal Classification (ASJC) codes

Pediatrics, Perinatology, and Child Health

Access to Document

10.1016/j.jpeds.2015.09.020

Cite this

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{af287b8cfdfd45f5a6abc194f1cc6c96,

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 Lucy Carruth and Elizabeth Chau and Chris Chute",

note = "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 (US)",

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 › peer-review

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 - Carruth, Lucy

AU - Chau, Elizabeth

AU - Chute, Chris

N1 - 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

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UR - http://www.scopus.com/inward/citedby.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

VL - 168

SP - 226-231.e1

JO - Journal of Pediatrics

JF - Journal of Pediatrics

SN - 0022-3476

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. https://doi.org/10.1016/j.jpeds.2015.09.020