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 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

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, 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 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

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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10.1016/j.jpeds.2015.09.020

Cite this

Brothers, K. B., Holm, I. A., Childerhose, J. E., Antommaria, A. H. M., Bernhardt, B. A., Clayton, E. W., Gelb, B. D., Joffe, S., Lynch, J. A., McCormick, J. B., McCullough, L. B., Parsons, D. W., Sundaresan, A. S., Wolf, W. A., Yu, J. H., Wilfond, B. S., Berkman, B. E., Biesecker, L. G., Hull, S. C., ... Stallings, S. (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

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

In: Journal of Pediatrics, Vol. 168, 01.01.2016, p. 226-231.e1.

Research output: Contribution to journal › Comment/debate › peer-review

Brothers, KB, Holm, IA, Childerhose, JE, Antommaria, AHM, Bernhardt, BA, Clayton, EW, Gelb, BD, Joffe, S, Lynch, JA, McCormick, JB, McCullough, LB, Parsons, DW, Sundaresan, AS, Wolf, WA, Yu, JH, Wilfond, BS, Berkman, BE, Biesecker, LG, Hull, SC, Biswas, S, Chung, WK, Koenig, B, Lehmann, LS, Lewis, M, McGuire, AL, Slashinski, MJ, Ross, LF, Salama, JS, Skinner, D, Tabor, HK, Wolf, SM, Perry, C, Chandler, A, Cobb, B, Harley, J, Myers, M, Chiavacci, R, Connolly, J, Faucett, A, Fetterolf, S, Ledbetter, D, Williams, J, Ehrlich, K, Fullerton, M, Hansen, K, Hartzler, A, Scrol, A, Carruth, L, Chau, E, Chute, C, Kullo, I, Sharp, R, Brilliant, M, Frost, N, Kitchner, T, McCarty, C, Ferryman, K, Horowitz, C, Keppel, Y, Rhodes, R, Sanderson, S, Zinberg, R, Aufox, S, Heathcote, M, Pan, V, Smith, M, Garrison, N, Basford, M, Kirby, J, Bodin Claar, M, Melancon, L & Stallings, S 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

Brothers, Kyle B. ; Holm, Ingrid A. ; Childerhose, Janet E. ; Antommaria, Armand H M ; Bernhardt, Barbara A. ; Clayton, Ellen Wright ; Gelb, Bruce D. ; Joffe, Steven ; Lynch, John A. ; McCormick, Jennifer B. ; McCullough, Laurence B. ; Parsons, D. Williams ; Sundaresan, Agnes S. ; Wolf, Wendy A. ; Yu, Joon Ho ; Wilfond, Benjamin S. ; Berkman, Benjamin E. ; Biesecker, Leslie G. ; Hull, Sara C. ; Biswas, Sawona ; Chung, Wendy K. ; Koenig, Barbara ; Lehmann, Lisa S. ; Lewis, Michelle ; McGuire, Amy L. ; Slashinski, Melody J. ; Ross, Lainie F. ; Salama, Joseph S. ; Skinner, Debra ; Tabor, Holly K. ; Wolf, Susan M. ; Perry, Cassandra ; Chandler, Ariel ; Cobb, Beth ; Harley, John ; Myers, Melanie ; Chiavacci, Rosetta ; Connolly, John ; Faucett, Andy ; Fetterolf, Samantha ; Ledbetter, David ; Williams, Janet ; Ehrlich, Kelly ; Fullerton, Malia ; Hansen, Kelly ; Hartzler, Andrea ; Scrol, Aaron ; Carruth, Lucy ; Chau, Elizabeth ; Chute, Chris ; Kullo, Iftikhar ; Sharp, Richard ; Brilliant, Murray ; Frost, Norm ; Kitchner, Terrie ; McCarty, Cathy ; Ferryman, Kadija ; Horowitz, Carol ; Keppel, Yolanda ; Rhodes, Rosamond ; Sanderson, Saskia ; Zinberg, Randi ; Aufox, Sharon ; Heathcote, Michael ; Pan, Vivian ; Smith, Maureen ; Garrison, Nanibaa' ; Basford, Melissa ; Kirby, Jacqueline ; Bodin Claar, Mollie ; Melancon, Lauren ; Stallings, Sarah. / When Participants in Genomic Research Grow Up : Contact and Consent at the Age of Majority. In: Journal of Pediatrics. 2016 ; Vol. 168. pp. 226-231.e1.

@article{ba85161b163a4bdea81a0b3430a24efd,

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

author = "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 and Iftikhar Kullo and Richard Sharp and Murray Brilliant and Norm Frost and Terrie Kitchner and Cathy McCarty and Kadija Ferryman and Carol Horowitz and Yolanda Keppel and Rosamond Rhodes and Saskia Sanderson and Randi Zinberg and Sharon Aufox and Michael Heathcote and Vivian Pan and Maureen Smith and Nanibaa' Garrison and Melissa Basford and Jacqueline Kirby and {Bodin Claar}, Mollie and Lauren Melancon and Sarah Stallings",

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",

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

language = "English (US)",

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pages = "226--231.e1",

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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

AU - Kullo, Iftikhar

AU - Sharp, Richard

AU - Brilliant, Murray

AU - Frost, Norm

AU - Kitchner, Terrie

AU - McCarty, Cathy

AU - Ferryman, Kadija

AU - Horowitz, Carol

AU - Keppel, Yolanda

AU - Rhodes, Rosamond

AU - Sanderson, Saskia

AU - Zinberg, Randi

AU - Aufox, Sharon

AU - Heathcote, Michael

AU - Pan, Vivian

AU - Smith, Maureen

AU - Garrison, Nanibaa'

AU - Basford, Melissa

AU - Kirby, Jacqueline

AU - Bodin Claar, Mollie

AU - Melancon, Lauren

AU - Stallings, Sarah

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

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