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

Kyle B. Brothers, Ingrid A. Holm, Janet E. Childerhose, Armand H M Antommaria, Barbara A. Bernhardt, Ellen Wright Clayton, Bruce D. Gelb, Steven Joffe, John A. Lynch, Jennifer B. McCormick, Laurence B. McCullough, D. Williams Parsons, Agnes S. Sundaresan, Wendy A. Wolf, Joon Ho Yu, Benjamin S. Wilfond, Benjamin E. Berkman, Leslie G. Biesecker, Sara C. Hull, Sawona BiswasWendy K. Chung, Barbara Koenig, Lisa S. Lehmann, Michelle Lewis, Amy L. McGuire, Melody J. Slashinski, Lainie F. Ross, Joseph S. Salama, Debra Skinner, Holly K. Tabor, Susan M. Wolf, Cassandra Perry, Ariel Chandler, Beth Cobb, John Harley, Melanie Myers, Rosetta Chiavacci, John Connolly, Andy Faucett, Samantha Fetterolf, David Ledbetter, Janet Williams, Kelly Ehrlich, Malia Fullerton, Kelly Hansen, Andrea Hartzler, Aaron Scrol, Lucy Carruth, Elizabeth Chau, Chris Chute, Iftikhar Kullo, Richard Sharp, Murray Brilliant, Norm Frost, Terrie Kitchner, Cathy McCarty, Kadija Ferryman, Carol Horowitz, Yolanda Keppel, Rosamond Rhodes, Saskia Sanderson, Randi Zinberg, Sharon Aufox, Michael Heathcote, Vivian Pan, Maureen Smith, Nanibaa' Garrison, Melissa Basford, Jacqueline Kirby, Mollie Bodin Claar, Lauren Melancon, Sarah Stallings

Research output: Contribution to journalComment/debatepeer-review

9 Scopus citations
Original languageEnglish (US)
Pages (from-to)226-231.e1
JournalJournal of Pediatrics
Volume168
DOIs
StatePublished - Jan 1 2016

Bibliographical 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.

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