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

Kyle B Brothers¹, Ingrid A Holm², Janet E Childerhose³, Armand H M Antommaria⁴, Barbara A Bernhardt⁵, Ellen Wright Clayton⁶, Bruce D Gelb⁷, Steven Joffe⁸, John A Lynch⁹, Jennifer B McCormick¹⁰, Laurence B McCullough¹¹, D Williams Parsons¹², Agnes S Sundaresan¹³, Wendy A Wolf¹⁴, Joon-Ho Yu¹⁵, Benjamin S Wilfond¹⁶; Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium

Collaborators, Affiliations

Collaborators

Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium:
Benjamin E Berkman, Leslie G Biesecker, Sara C Hull, Sawona Biswas, Wendy 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

Affiliations

¹ Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY. Electronic address: kyle.brothers@louisville.edu.
² Division of Genetics and Genomics, Boston Children's Hospital; The Manton Center for Orphan Disease Research, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, MA.
³ Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI.
⁴ Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
⁵ Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
⁶ Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN.
⁷ Mindich Child Health and Development Institute, Departments of Pediatrics and Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY.
⁸ Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
⁹ Department of Communication, University of Cincinnati, Cincinnati, OH.
¹⁰ Divisions of General Internal Medicine and Health Care and Policy Research, and the Mayo Biomedical Ethics Program, Mayo Clinic, Rochester, MN.
¹¹ Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
¹² Texas Children's Cancer Center and Department of Pediatrics, Baylor College of Medicine, Houston, TX.
¹³ Henry Hood Center for Health Research, Geisinger Health System, Danville, PA.
¹⁴ Division of Genetics and Genomics, Boston Children's Hospital.
¹⁵ Department of Pediatrics, University of Washington.
¹⁶ Treuman Katz Center for Pediatric Ethics, Seattle Children's Hospital, Seattle, WA.

PMID: 26477867
PMCID: PMC4824174
DOI: 10.1016/j.jpeds.2015.09.020

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

Kyle B Brothers et al. J Pediatr. 2016 Jan.

. 2016 Jan:168:226-231.e1.

doi: 10.1016/j.jpeds.2015.09.020. Epub 2015 Oct 23.

Authors

Collaborators

Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium:
Benjamin E Berkman, Leslie G Biesecker, Sara C Hull, Sawona Biswas, Wendy 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

Affiliations

¹ Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY. Electronic address: kyle.brothers@louisville.edu.
² Division of Genetics and Genomics, Boston Children's Hospital; The Manton Center for Orphan Disease Research, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, MA.
³ Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI.
⁴ Ethics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
⁵ Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
⁶ Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN.
⁷ Mindich Child Health and Development Institute, Departments of Pediatrics and Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY.
⁸ Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
⁹ Department of Communication, University of Cincinnati, Cincinnati, OH.
¹⁰ Divisions of General Internal Medicine and Health Care and Policy Research, and the Mayo Biomedical Ethics Program, Mayo Clinic, Rochester, MN.
¹¹ Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
¹² Texas Children's Cancer Center and Department of Pediatrics, Baylor College of Medicine, Houston, TX.
¹³ Henry Hood Center for Health Research, Geisinger Health System, Danville, PA.
¹⁴ Division of Genetics and Genomics, Boston Children's Hospital.
¹⁵ Department of Pediatrics, University of Washington.
¹⁶ Treuman Katz Center for Pediatric Ethics, Seattle Children's Hospital, Seattle, WA.

PMID: 26477867
PMCID: PMC4824174
DOI: 10.1016/j.jpeds.2015.09.020

No abstract available

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Conflict of interest statement

The authors declare no conflicts of interest.

References

1. Clinical Sequencing Exploratory Research (CSER): National Human Genome Research Institute, National Institutes of Health. [cited 2013 July 25];2013 updated April 16, 2013. Available from: http://www.genome.gov/27546194.
1. Bethesda MD: U.S. National Library of Medicine; 2014. [cited 2014 October 1]. dbGaP. Available from: http://www.ncbi.nlm.nih.gov/gap.
1. ClinVar. Bethesda MD: U.S. National Library of Medicine; 2014. [cited 2014 October 1]. Available from: http://www.ncbi.nlm.nih.gov/clinvar/
1. Lam RW, Bloch M, Jones BD, Marcus AM, Fox S, Amman W, et al. Psychiatric morbidity associated with early clinical diagnosis of Huntington disease in a predictive testing program. Journal of Clinical Psychiatry. 1988;49:444–7. - PubMed
1. Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, et al. Disclosure of APOE Genotype for Risk of Alzheimer's Disease. New England Journal of Medicine. 2009;361:245–54. - PMC - PubMed

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

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Molecular Biology Databases