When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority - 22/12/15
Doi : 10.1016/j.jpeds.2015.09.020
Kyle B. Brothers, MD, PhD 1, ⁎ 
, Ingrid A. Holm, MD, MPH 2, 3, 4, Janet E. Childerhose, PhD 5, Armand H.M. Antommaria, MD, PhD 6, Barbara A. Bernhardt, MS, CGC 7, Ellen Wright Clayton, MD, JD 8, Bruce D. Gelb, MD 9, Steven Joffe, MD, MPH 10, John A. Lynch, PhD 11, Jennifer B. McCormick, PhD 12, Laurence B. McCullough, PhD 13, D. Williams Parsons, MD, PhD 14, Agnes S. Sundaresan, MD 15, Wendy A. Wolf, PhD 2, Joon-Ho Yu, MPH, PhD 16, Benjamin S. Wilfond, MD 17
on behalf of the
, Ingrid A. Holm, MD, MPH 2, 3, 4, Janet E. Childerhose, PhD 5, Armand H.M. Antommaria, MD, PhD 6, Barbara A. Bernhardt, MS, CGC 7, Ellen Wright Clayton, MD, JD 8, Bruce D. Gelb, MD 9, Steven Joffe, MD, MPH 10, John A. Lynch, PhD 11, Jennifer B. McCormick, PhD 12, Laurence B. McCullough, PhD 13, D. Williams Parsons, MD, PhD 14, Agnes S. Sundaresan, MD 15, Wendy A. Wolf, PhD 2, Joon-Ho Yu, MPH, PhD 16, Benjamin S. Wilfond, MD 17on behalf of the
Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium
Benjamin E. Berkman, JD, MPH, Leslie G. Biesecker, MD, Sara C. Hull, PhD, Sawona Biswas, MSc, MS, CGC, Wendy K. Chung, MD, PhD, Barbara Koenig, PhD, Lisa S. Lehmann, MD, PhD, Michelle Lewis, MD, JD, Amy L. McGuire, JD, PhD, Melody J. Slashinski, PhD, MPH, Lainie F. Ross, MD, PhD, Joseph S. Salama, BS, Debra Skinner, PhD, Holly K. Tabor, PhD, Susan M. Wolf, JD, and the
Consent, Education, Regulation, and Consultation Workgroup of the Electronic Medical Records and Genomics (eMERGE) Network∗
Cassandra Perry, MS, Ariel Chandler, Beth Cobb, MBA, John Harley, MD, PhD, Melanie Myers, PhD, MS, LGC, Rosetta Chiavacci, BSN, CCRC, John Connolly, PhD, Andy Faucett, MS, Samantha Fetterolf, David Ledbetter, PhD, Janet Williams, MS, Kelly Ehrlich, MS, Malia Fullerton, DPhil, Kelly Hansen, Andrea Hartzler, PhD, Aaron Scrol, MA, Lucy Carruth, PhD, Elizabeth Chau, Chris Chute, MD, DrPH, FACMI, Iftikhar Kullo, MD, Richard Sharp, PhD, Murray Brilliant, PhD, Norm Frost, MD, MPH, Terrie Kitchner, Cathy McCarty, PhD, MPH, RD, Kadija Ferryman, MS, Carol Horowitz, MD, MPH, Yolanda Keppel, Rosamond Rhodes, PhD, Saskia Sanderson, PhD, Randi Zinberg, MS, CGC, Sharon Aufox, MS, CGC, Michael Heathcote, Vivian Pan, CGC, Maureen Smith, MS, CGC, Nanibaa' Garrison, PhD, Melissa Basford, MBA, Jacqueline Kirby, MS, Mollie Bodin Claar, MA, Lauren Melancon, Sarah Stallings, PhD 1 Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY
2 Division of Genetics and Genomics, Boston Children's Hospital
3 The Manton Center for Orphan Disease Research, Boston Children's Hospital
4 Department of Pediatrics, Harvard Medical School, Boston, MA
5 Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI
6 Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
7 Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA
8 Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN
9 Mindich Child Health and Development Institute, Departments of Pediatrics and Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY
10 Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA
11 Department of Communication, University of Cincinnati, Cincinnati, OH
12 Divisions of General Internal Medicine and Health Care and Policy Research, and the Mayo Biomedical Ethics Program, Mayo Clinic, Rochester, MN
13 Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX
14 Texas Children's Cancer Center and Department of Pediatrics, Baylor College of Medicine, Houston, TX
15 Henry Hood Center for Health Research, Geisinger Health System, Danville, PA
16 Department of Pediatrics, University of Washington
17 Treuman Katz Center for Pediatric Ethics, Seattle Children's Hospital, Seattle, WA
∗Reprint requests: Kyle B. Brothers, MD, PhD, Department of Pediatrics, University of Louisville School of Medicine, 231 E Chestnut St, N-97, Louisville, KY 40202.
Keyword : IRB, OHRP, SACHRP
Le texte complet de cet article est disponible en PDF.
Plan
| ∗ | List of members of the CSER Consortium and the eMERGE Network is available at www.jpeds.com/ (Appendix 1). |
| Funding information is available at www.jpeds.com/ (Appendix 2). The authors declare no conflicts of interest. |
© 2016
Elsevier Inc. Tous droits réservés.
Vol 168
P. 226 - janvier 2016 Retour au numéro
Article précédent
- Growth Asymmetry, Head Circumference, and Neurodevelopmental Outcomes in Infants with Single Ventricles
- Thomas A. Miller, Victor Zak, Peter Shrader, Chitra Ravishankar, Victoria L. Pemberton, Jane W. Newburger, Amanda J. Shillingford, Nicholas Dagincourt, James F. Cnota, Linda M. Lambert, Renee Sananes, Marc E. Richmond, Daphne T. Hsu, Stephen G. Miller, Sinai C. Zyblewski, Richard V. Williams, Pediatric Heart Network Investigators, Thomas A. Miller, Victor Zak, Peter Shrader, Chitra Ravishankar, Victoria L. Pemberton, Jane W. Newburger, Amanda J. Shillingford, Nicholas Dagincourt, James F. Cnota, Linda M. Lambert, Renee Sananes, Marc E. Richmond, Daphne T. Hsu, Stephen G. Miller, Sinai C. Zyblewski, Richard V. Williams
- Organ Transplant Tolerance for Children; in Sight for Some
- Stephen I. Alexander, Joren C. Madsen
Bienvenue sur EM-consulte, la référence des professionnels de santé.
L’accès au texte intégral de cet article nécessite un abonnement.
Déjà abonné à cette revue ?