Literature DB >> 25748091

Adolescent perspectives on the return of individual results in genomic addiction research.

Marilyn E Coors1, Kristen M Raymond, Shannon K McWilliams, Christian J Hopfer, Susan K Mikulich-Gilbertson.   

Abstract

This study surveyed all adolescents who were enrolled in behavioral genomic research and provided DNA to a biobank, including 320 patients undergoing treatment for substance and conduct problems (SCPs) and 109 non-SCP controls. Participants selected from three options on the return of individual genomic results (RIR) and rated eight methods of re-contact. Most individuals with SCPs (77.8%) and non-SCP controls (72.5%) wanted RIR involving health or behavioral implications. The majority of individuals with SCPs (67.2%) and non-SCP controls (69.7%) indicated that phone re-contact was 'best', with e-mail (22.5% SCPs, 33.9% non-SCPs) and social networking websites (21.3% SCPs, 20.2% non-SCPs) being viable options. These results suggest a layered approach for RIR: phone calls, followed by e-mails and a secure message to a social networking account. Data from this special and vulnerable population, which includes youth involved in the criminal justice system and substantial minority participation, bring an essential and missing perspective to the discussion of RIR.

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Mesh:

Year:  2015        PMID: 25748091      PMCID: PMC5094179          DOI: 10.1097/YPG.0000000000000083

Source DB:  PubMed          Journal:  Psychiatr Genet        ISSN: 0955-8829            Impact factor:   2.458


  30 in total

1.  Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project.

Authors:  Béatrice Godard; Jennifer Marshall; Claude Laberge
Journal:  Community Genet       Date:  2007

2.  Public perspectives on returning genetics and genomics research results.

Authors:  J O'Daniel; S B Haga
Journal:  Public Health Genomics       Date:  2011-05-07       Impact factor: 2.000

3.  Attitudes of non-African American focus group participants toward return of results from exome and whole genome sequencing.

Authors:  Joon-Ho Yu; Julia Crouch; Seema M Jamal; Michael J Bamshad; Holly K Tabor
Journal:  Am J Med Genet A       Date:  2014-05-20       Impact factor: 2.802

4.  What is a meaningful result? Disclosing the results of genomic research in autism to research participants.

Authors:  Fiona Alice Miller; Robin Zoe Hayeems; Jessica Peace Bytautas
Journal:  Eur J Hum Genet       Date:  2010-03-17       Impact factor: 4.246

5.  The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer.

Authors:  C V Fernandez; D Santor; C Weijer; C Strahlendorf; A Moghrabi; R Pentz; J Gao; E Kodish
Journal:  Pediatr Blood Cancer       Date:  2007-04       Impact factor: 3.167

6.  Origins and consequences of age at first drink. II. Familial risk and heritability.

Authors:  M McGue; W G Iacono; L N Legrand; I Elkins
Journal:  Alcohol Clin Exp Res       Date:  2001-08       Impact factor: 3.455

7.  Parents' preferences for return of results in pediatric genomic research.

Authors:  S I Ziniel; S K Savage; N Huntington; J Amatruda; R C Green; E R Weitzman; P Taylor; I A Holm
Journal:  Public Health Genomics       Date:  2014-03-13       Impact factor: 2.000

8.  Direct to consumer genetic testing: Avoiding a culture war.

Authors:  James P Evans; Robert C Green
Journal:  Genet Med       Date:  2009-08       Impact factor: 8.822

9.  The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository.

Authors:  Erin D Harris; Sonja I Ziniel; Jonathan G Amatruda; Catherine M Clinton; Sarah K Savage; Patrick L Taylor; Noelle L Huntington; Robert C Green; Ingrid A Holm
Journal:  Genet Med       Date:  2012-01-26       Impact factor: 8.822

Review 10.  Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium.

Authors:  Jonathan S Berg; Laura M Amendola; Christine Eng; Eliezer Van Allen; Stacy W Gray; Nikhil Wagle; Heidi L Rehm; Elizabeth T DeChene; Matthew C Dulik; Fuki M Hisama; Wylie Burke; Nancy B Spinner; Levi Garraway; Robert C Green; Sharon Plon; James P Evans; Gail P Jarvik
Journal:  Genet Med       Date:  2013-10-24       Impact factor: 8.822

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  6 in total

1.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

2.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

3.  Adolescents with substance use disorder and assent/consent: Empirical data on understanding biobank risks in genomic research.

Authors:  Marilyn E Coors; Kristen M Raymond; Christian J Hopfer; Joseph Sakai; Shannon K McWilliams; Susan Young; Susan K Mikulich-Gilbertson
Journal:  Drug Alcohol Depend       Date:  2015-12-21       Impact factor: 4.492

Review 4.  Views on genomic research result delivery methods and informed consent: a review.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh
Journal:  Per Med       Date:  2021-04-06       Impact factor: 2.512

5.  Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.

Authors:  Dimpho Ralefala; Mary Kasule; Olivia P Matshabane; Ambroise Wonkam; Mogomotsi Matshaba; Jantina de Vries
Journal:  J Empir Res Hum Res Ethics       Date:  2021-12       Impact factor: 1.742

6.  Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?

Authors:  Dimpho Ralefala; Mary Kasule; Ambroise Wonkam; Mogomotsi Matshaba; Jantina de Vries
Journal:  BMC Med Ethics       Date:  2020-11-04       Impact factor: 2.834

  6 in total

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