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

Holm, Ingrid A.; Childerhose, Janet E.; Antommaria, Armand H. Matheny; Clayton, Ellen Wright; Gelb, Bruce D.; Joffe, Steven; Lynch, John; 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 Chandros; Biswas, Sawona; Chung, Wendy K.; Koenig, Barbara A.; Lehmann, Lisa Soleymani; Lewis, Michelle; McGuire, Amy L.; Slashinski, Melody J.; Ross, Lainie Friedman; Salama, Joseph; Skinner, Debra; Tabor, Holly K.; Wolf, Susan M.; Perry, Cassandra; Chandler, Ariel E.; Cobb, Beth L.; Harley, John B.; Myers, Melanie F.; Chiavacci, Rosetta M.; Connolly, John J.; Faucett, Andy; Fetterolf, Samantha N.; Ledbetter, David H.; Williams, Janet L.; Ehrlich, Kelly; Fullerton, Malia; Hansen, Kelly; Hartzler, Andrea L.; Scrol, Aaron; Carruth, Lucy M.; Chau, Elizabeth A.; Chute, Chris; Kullo, Iftikhar; Brilliant, Murray H.; Frost, Norm; Kitchner, Terrie; McCarty, Catherine A.; Ferryman, Kadija; Horowitz, Carol R.; Keppel, Yolanda; Sanderson, S; Zinberg, Randi E.; Aufox, Sharon; Heathcote, Michael; Pan, Vivian; Smith, Maureen E.; Garrison, Nanibaa’ A.; Basford, Melissa A.; Kirby, Jacqueline; Melancon, Lauren; Stallings, Sarah

doi:10.1016/j.jpeds.2015.09.020

Cited by 15 publications

(14 citation statements)

References 22 publications

(19 reference statements)

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“…As Clayton (Clayton, 2015) notes, the American College of Medical Genetics and Genomics does not provide guidance regarding ways to engage minors in decisions about secondary findings. Further, participants may need to provide consent for ongoing analysis of their samples after they turn 18 (Brothers et al, 2016). As such, the initial process of decision making about research participation and opting to receive secondary findings is especially important.…”

Section: Discussionmentioning

confidence: 99%

An Observational Study of Children’s Involvement in Informed Consent for Exome Sequencing Research

Miller

Werner‐Lin

Walser

et al. 2016

Journal of Empirical Research on Human Research Ethics

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The goal of this study was to examine children’s involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8–17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child’s involvement in the majority (73%) of sessions, and most (75%) children also verbally participated. Provider facilitation was strongly associated with likelihood of child participation. These findings underscore that strategies such as asking for children’s opinions and soliciting their questions show respect for children and may increase the likelihood that they are engaged and involved in decisions about research participation.

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Section: Discussionmentioning

confidence: 99%

An Observational Study of Children’s Involvement in Informed Consent for Exome Sequencing Research

Miller

Werner‐Lin

Walser

et al. 2016

Journal of Empirical Research on Human Research Ethics

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“…Parents are legally authorized to give permission for research participation for children, but their permission is no longer legally effective for research interactions with adolescents that will take place after they reach the age of majority. 21 This is not the only time, however, when it may be important to revisit research participation with a child. The information provided to children when they enroll in a research study may have been developmentally appropriate at the time, but it will become outdated and inadequate as they mature.…”

Section: Readdressing Consent In Longitudinal Pediatric Researchmentioning

confidence: 99%

Online Pediatric Research: Addressing Consent, Assent, and Parental Permission

Brothers¹,

Clayton²,

Goldenberg³

2020

J. Law. Med. Ethics

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“…Other examples point to this same conclusion: debates about broad consent for biorepository research, 19 the identifiability of DNA-containing biosamples, 20 and consent of pediatric research participants upon reaching the age of majority. 21 Each of these have arisen as important controversies in research ethics in part because of new research practices and technologies that were not anticipated by the Common Rule. But we cannot adequately understand or address these challenges unless we also recognize that the values and expectations of investigators, IRB members, and research participants have changed over time.…”

Section: “Modernizing” Oversight and Governance Of Research With Humansmentioning

confidence: 99%

A Belmont Reboot: Building a Normative Foundation for Human Research in the 21st Century

Rivera

Cadigan

Goldenberg

2019

J. Law. Med. Ethics

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

Cited by 15 publications

References 22 publications

An Observational Study of Children’s Involvement in Informed Consent for Exome Sequencing Research

An Observational Study of Children’s Involvement in Informed Consent for Exome Sequencing Research

Online Pediatric Research: Addressing Consent, Assent, and Parental Permission

A Belmont Reboot: Building a Normative Foundation for Human Research in the 21st Century

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