Literature DB >> 18547202

Incidental findings in pediatric research.

Benjamin S Wilfond1, Katherine J Carpenter.   

Abstract

The approach to incidental research findings in children emerges by considering the child-parent relationship and balancing divergent interests and preferences. Incidental findings with clear and proximate clinical importance should be disclosed to both. We recommend that particularly sensitive or private information (e.g., pregnancy or drug use) should be disclosed to the adolescent first, while particularly serious information (e.g., cancer) should first be disclosed to the parent. These approaches allow the researcher to form an alliance with one party prior to engaging the other. However, unlike clinical settings, where there may be presumptive expectations of confidentiality about sharing information within the family, in most research settings it is reasonable to plan to disclose such information to both parties. It is important to communicate this plan during the informed consent process separately to adolescents to avoid enrolling adolescents when sensitive incidental findings such as pregnancy and drug use may be detected. The approach to incidental findings without clear and proximate benefit is challenging. Researchers should plan more limited disclosure of such incidental findings for pediatric participants than for adult participants.

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Year:  2008        PMID: 18547202      PMCID: PMC3673286          DOI: 10.1111/j.1748-720X.2008.00277.x

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  27 in total

Review 1.  Genetic dilemmas and the child's right to an open future.

Authors:  D S Davis
Journal:  Hastings Cent Rep       Date:  1997 Mar-Apr       Impact factor: 2.683

2.  Disclosing individual results of clinical research: implications of respect for participants.

Authors:  David I Shalowitz; Franklin G Miller
Journal:  JAMA       Date:  2005-08-10       Impact factor: 56.272

3.  Implications of disclosing individual results of clinical research.

Authors:  Ellen Wright Clayton; Lainie Friedman Ross
Journal:  JAMA       Date:  2006-01-04       Impact factor: 56.272

4.  Disclosing individual genetic results to research participants.

Authors:  Vardit Ravitsky; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

Review 5.  Returning genetic research results to individuals: points-to-consider.

Authors:  Gaile Renegar; Christopher J Webster; Steffen Stuerzebecher; Lea Harty; Susan E Ide; Beth Balkite; Taryn A Rogalski-Salter; Nadine Cohen; Brian B Spear; Diane M Barnes; Celia Brazell
Journal:  Bioethics       Date:  2006-02       Impact factor: 1.898

6.  Managing familial risk in genetic testing.

Authors:  Sara Taub; Karine Morin; Monique A Spillman; Robert M Sade; Frank A Riddick
Journal:  Genet Test       Date:  2004

7.  Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

Authors:  Ebony B Bookman; Aleisha A Langehorne; John H Eckfeldt; Kathleen C Glass; Gail P Jarvik; Michael Klag; Greg Koski; Arno Motulsky; Benjamin Wilfond; Teri A Manolio; Richard R Fabsitz; Russell V Luepker
Journal:  Am J Med Genet A       Date:  2006-05-15       Impact factor: 2.802

Review 8.  Disclosure of an HIV diagnosis to children: history, current research, and future directions.

Authors:  Lori Wiener; Claude Ann Mellins; Stephanie Marhefka; Haven B Battles
Journal:  J Dev Behav Pediatr       Date:  2007-04       Impact factor: 2.225

Review 9.  Incidentalomas. A disease of modern technology.

Authors:  R M Chidiac; D C Aron
Journal:  Endocrinol Metab Clin North Am       Date:  1997-03       Impact factor: 4.741

Review 10.  Consent, competence, and confidentiality related to psychiatric conditions in adolescent medicine practice.

Authors:  Amy T Campbell
Journal:  Adolesc Med Clin       Date:  2006-02
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  21 in total

1.  Management of incidental findings during imaging research in "healthy" volunteers: current UK practice.

Authors:  T C Booth; A D Waldman; J M Wardlaw; S A Taylor; A Jackson
Journal:  Br J Radiol       Date:  2011-09-21       Impact factor: 3.039

Review 2.  Incidental findings found in "healthy" volunteers during imaging performed for research: current legal and ethical implications.

Authors:  T C Booth; A Jackson; J M Wardlaw; S A Taylor; A D Waldman
Journal:  Br J Radiol       Date:  2010-03-24       Impact factor: 3.039

3.  Return of Results from Research Using Newborn Screening Dried Blood Samples.

Authors:  Michelle Huckaby Lewis; Aaron J Goldenberg
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

4.  Researchers' perceptions of the ethical implications of pharmacogenomics research with children.

Authors:  D Avard; T Silverstein; G Sillon; Y Joly
Journal:  Public Health Genomics       Date:  2009-02-10       Impact factor: 2.000

Review 5.  Incidental findings from clinical genome-wide sequencing: a review.

Authors:  Z Lohn; S Adam; P H Birch; J M Friedman
Journal:  J Genet Couns       Date:  2013-05-26       Impact factor: 2.537

Review 6.  Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.

Authors:  Ruqayyah Abdul-Karim; Benjamin E Berkman; David Wendler; Annette Rid; Javed Khan; Tom Badgett; Sara Chandros Hull
Journal:  Pediatrics       Date:  2013-02-11       Impact factor: 7.124

7.  A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.

Authors:  Debra S Brandt; Laura Shinkunas; Stephen L Hillis; Sandra E Daack-Hirsch; Martha Driessnack; Nancy R Downing; Megan F Liu; Lisa L Shah; Janet K Williams; Christian M Simon
Journal:  J Genet Couns       Date:  2013-04-02       Impact factor: 2.537

Review 8.  Paediatric genomics: diagnosing rare disease in children.

Authors:  Caroline F Wright; David R FitzPatrick; Helen V Firth
Journal:  Nat Rev Genet       Date:  2018-02-05       Impact factor: 53.242

9.  Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.

Authors:  Melanie F Myers; Lisa J Martin; Cynthia A Prows
Journal:  J Adolesc Health       Date:  2019-11-01       Impact factor: 5.012

10.  Parental Perception of Self-Empowerment in Pediatric Pharmacogenetic Testing: The Reactions of Parents to the Communication of Actual and Hypothetical CYP2D6 Test Results.

Authors:  Sarah Adelsperger; Cynthia A Prows; Melanie F Myers; Cassandra L Perry; Ariel Chandler; Ingrid A Holm; John A Lynch
Journal:  Health Commun       Date:  2016-08-30
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