Literature DB >> 25264176

Practical guidance on informed consent for pediatric participants in a biorepository.

Kyle B Brothers1, John A Lynch2, Sharon A Aufox3, John J Connolly4, Bruce D Gelb5, Ingrid A Holm6, Saskia C Sanderson7, Jennifer B McCormick8, Janet L Williams9, Wendy A Wolf10, Armand H M Antommaria11, Ellen W Clayton12.   

Abstract

Entities:  

Mesh：

Year:  2014        PMID： 25264176      PMCID： PMC4254313          DOI： 10.1016/j.mayocp.2014.07.006

Source DB:  PubMed          Journal:  Mayo Clin Proc        ISSN： 0025-6196            Impact factor:   7.616


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  27 in total

1.  Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience.

Authors:  Amy L McGuire; Melissa Basford; Lynn G Dressler; Stephanie M Fullerton; Barbara A Koenig; Rongling Li; Cathy A McCarty; Erin Ramos; Maureen E Smith; Carol P Somkin; Carol Waudby; Wendy A Wolf; Ellen Wright Clayton
Journal:  Genome Res       Date:  2011-06-01       Impact factor: 9.043

2.  Children in research: new perspectives and practices for informed consent.

Authors:  Marion E Broome; Eric Kodish; Gail Geller; Laura A Siminoff
Journal:  IRB       Date:  2003 Sep-Oct

3.  Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making.

Authors:  Lainie Friedman Ross; Mark A Rothstein; Ellen Wright Clayton
Journal:  JAMA       Date:  2013-07-24       Impact factor: 56.272

4.  Research ethics. Children and population biobanks.

Authors:  David Gurwitz; Isabel Fortier; Jeantine E Lunshof; Bartha Maria Knoppers
Journal:  Science       Date:  2009-08-14       Impact factor: 47.728

5.  Pediatric biobanks: approaching informed consent for continuing research after children grow up.

Authors:  Aaron J Goldenberg; Sara Chandros Hull; Jeffrey R Botkin; Benjamin S Wilfond
Journal:  J Pediatr       Date:  2009-10       Impact factor: 4.406

6.  Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics.

Authors: 
Journal:  Pediatrics       Date:  1995-02       Impact factor: 7.124

7.  The legal risks of returning results of genomics research.

Authors:  Ellen Wright Clayton; Amy L McGuire
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

8.  ACMG recommendations on incidental findings are flawed scientifically and ethically.

Authors:  Neil A Holtzman
Journal:  Genet Med       Date:  2013-09       Impact factor: 8.822

9.  Technical report: Ethical and policy issues in genetic testing and screening of children.

Authors:  Lainie Friedman Ross; Laine Friedman Ross; Howard M Saal; Karen L David; Rebecca R Anderson
Journal:  Genet Med       Date:  2013-02-21       Impact factor: 8.822

10.  Characterizing biobank organizations in the U.S.: results from a national survey.

Authors:  Gail E Henderson; R Jean Cadigan; Teresa P Edwards; Ian Conlon; Anders G Nelson; James P Evans; Arlene M Davis; Catherine Zimmer; Bryan J Weiner
Journal:  Genome Med       Date:  2013-01-25       Impact factor: 11.117
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  11 in total

Review 1.  Reconsidering the Need for Reconsent at 18.

Authors:  Benjamin E Berkman; Dana Howard; David Wendler
Journal:  Pediatrics       Date:  2018-07-06       Impact factor: 7.124

2.  Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.

Authors:  Nanibaa A Garrison
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

3.  Biorepository and integrative genomics initiative: designing and implementing a preliminary platform for predictive, preventive and personalized medicine at a pediatric hospital in a historically disadvantaged community in the USA.

Authors:  Rony Jose; Robert Rooney; Naga Nagisetty; Robert Davis; David Hains
Journal:  EPMA J       Date:  2018-08-02       Impact factor: 6.543

4.  Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives.

Authors:  Erin D Paquette; Sabrina F Derrington; Avani Shukla; Neha Sinha; Sarah Oswald; Lauren Sorce; Kelly N Michelson
Journal:  J Empir Res Hum Res Ethics       Date:  2018-06-14       Impact factor: 1.742

5.  Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Authors:  Robert C Green; Katrina A B Goddard; Gail P Jarvik; Laura M Amendola; Paul S Appelbaum; Jonathan S Berg; Barbara A Bernhardt; Leslie G Biesecker; Sawona Biswas; Carrie L Blout; Kevin M Bowling; Kyle B Brothers; Wylie Burke; Charlisse F Caga-Anan; Arul M Chinnaiyan; Wendy K Chung; Ellen W Clayton; Gregory M Cooper; Kelly East; James P Evans; Stephanie M Fullerton; Levi A Garraway; Jeremy R Garrett; Stacy W Gray; Gail E Henderson; Lucia A Hindorff; Ingrid A Holm; Michelle Huckaby Lewis; Carolyn M Hutter; Pasi A Janne; Steven Joffe; David Kaufman; Bartha M Knoppers; Barbara A Koenig; Ian D Krantz; Teri A Manolio; Laurence McCullough; Jean McEwen; Amy McGuire; Donna Muzny; Richard M Myers; Deborah A Nickerson; Jeffrey Ou; Donald W Parsons; Gloria M Petersen; Sharon E Plon; Heidi L Rehm; J Scott Roberts; Dan Robinson; Joseph S Salama; Sarah Scollon; Richard R Sharp; Brian Shirts; Nancy B Spinner; Holly K Tabor; Peter Tarczy-Hornoch; David L Veenstra; Nikhil Wagle; Karen Weck; Benjamin S Wilfond; Kirk Wilhelmsen; Susan M Wolf; Julia Wynn; Joon-Ho Yu
Journal:  Am J Hum Genet       Date:  2016-05-12       Impact factor: 11.025

6.  Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.

Authors:  Susan M Wolf; Emily Scholtes; Barbara A Koenig; Gloria M Petersen; Susan A Berry; Laura M Beskow; Mary B Daly; Conrad V Fernandez; Robert C Green; Bonnie S LeRoy; Noralane M Lindor; P Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A Rothstein; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

7.  Ethical Considerations Related to Return of Results from Genomic Medicine Projects: The eMERGE Network (Phase III) Experience.

Authors:  Robyn Fossey; David Kochan; Erin Winkler; Joel E Pacyna; Janet Olson; Stephen Thibodeau; John J Connolly; Margaret Harr; Meckenzie A Behr; Cynthia A Prows; Beth Cobb; Melanie F Myers; Nancy D Leslie; Bahram Namjou-Khales; Hila Milo Rasouly; Julia Wynn; Alexander Fedotov; Wendy K Chung; Ali Gharavi; Janet L Williams; Lynn Pais; Ingrid Holm; Sharon Aufox; Maureen E Smith; Aaron Scrol; Kathleen Leppig; Gail P Jarvik; Georgia L Wiesner; Rongling Li; Mary Stroud; Jordan W Smoller; Richard R Sharp; Iftikhar J Kullo
Journal:  J Pers Med       Date:  2018-01-03

8.  Rethinking the "open future" argument against predictive genetic testing of children.

Authors:  Jeremy R Garrett; John D Lantos; Leslie G Biesecker; Janet E Childerhose; Wendy K Chung; Ingrid A Holm; Barbara A Koenig; Jean E McEwen; Benjamin S Wilfond; Kyle Brothers
Journal:  Genet Med       Date:  2019-03-21       Impact factor: 8.822

9.  Model consent clauses for rare disease research.

Authors:  Minh Thu Nguyen; Jack Goldblatt; Rosario Isasi; Marlene Jagut; Anneliene Hechtelt Jonker; Petra Kaufmann; Laetitia Ouillade; Fruszina Molnar-Gabor; Mahsa Shabani; Eric Sid; Anne Marie Tassé; Durhane Wong-Rieger; Bartha Maria Knoppers
Journal:  BMC Med Ethics       Date:  2019-08-01       Impact factor: 2.652

Review 10.  Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues.

Authors:  T J Kasperbauer; Colin Halverson
Journal:  Front Med (Lausanne)       Date:  2021-07-09
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