Literature DB >> 29962827

Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.

Wylie Burke1, Laura M Beskow2, Susan Brown Trinidad3, Stephanie M Fullerton4, Kathleen Brelsford2.   

Abstract

Entities:  

Keywords:  Genomics; data sharing; informed consent; return of results; trust/trustworthiness

Mesh：

Year:  2018        PMID： 29962827      PMCID： PMC6023399          DOI： 10.1177/1073110518766023

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


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  52 in total

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Authors:  David Wendler; Rebecca Pentz
Journal:  Am J Med Genet A       Date:  2007-08-01       Impact factor: 2.802

Review 2.  Return of individual research results and incidental findings: facing the challenges of translational science.

Authors:  Susan M Wolf
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

3.  Genetic influences on political ideologies: twin analyses of 19 measures of political ideologies from five democracies and genome-wide findings from three populations.

Authors:  Peter K Hatemi; Sarah E Medland; Robert Klemmensen; Sven Oskarsson; Levente Littvay; Christopher T Dawes; Brad Verhulst; Rose McDermott; Asbjørn Sonne Nørgaard; Casey A Klofstad; Kaare Christensen; Magnus Johannesson; Patrik K E Magnusson; Lindon J Eaves; Nicholas G Martin
Journal:  Behav Genet       Date:  2014-02-26       Impact factor: 2.805

4.  From consent to institutions: designing adaptive governance for genomic biobanks.

Authors:  Kieran C O'Doherty; Michael M Burgess; Kelly Edwards; Richard P Gallagher; Alice K Hawkins; Jane Kaye; Veronica McCaffrey; David E Winickoff
Journal:  Soc Sci Med       Date:  2011-07-02       Impact factor: 4.634

5.  A mechanism for controlled access to GWAS data: experience of the GAIN Data Access Committee.

Authors:  Erin M Ramos; Corina Din-Lovinescu; Ebony B Bookman; Lisa J McNeil; Carl C Baker; Georgy Godynskiy; Emily L Harris; Thomas Lehner; Catherine McKeon; Joel Moss; Vaurice L Starks; Stephen T Sherry; Teri A Manolio; Laura Lyman Rodriguez
Journal:  Am J Hum Genet       Date:  2013-04-04       Impact factor: 11.025

Review 6.  Diagnostic clinical genome and exome sequencing.

Authors:  Leslie G Biesecker; Robert C Green
Journal:  N Engl J Med       Date:  2014-06-19       Impact factor: 91.245

Review 7.  The challenge for the next generation of medical geneticists.

Authors:  Thierry Frebourg
Journal:  Hum Mutat       Date:  2014-06-28       Impact factor: 4.878

8.  NCBI's Database of Genotypes and Phenotypes: dbGaP.

Authors:  Kimberly A Tryka; Luning Hao; Anne Sturcke; Yumi Jin; Zhen Y Wang; Lora Ziyabari; Moira Lee; Natalia Popova; Nataliya Sharopova; Masato Kimura; Michael Feolo
Journal:  Nucleic Acids Res       Date:  2013-12-01       Impact factor: 16.971

Review 9.  The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis.

Authors:  Gareth J Hollands; David P French; Simon J Griffin; A Toby Prevost; Stephen Sutton; Sarah King; Theresa M Marteau
Journal:  BMJ       Date:  2016-03-15

10.  Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland.

Authors:  Casey Lynnette Overby; Kristin A Maloney; Tameka DeShawn Alestock; Justin Chavez; David Berman; Reem Maged Sharaf; Tom Fitzgerald; Eun-Young Kim; Kathleen Palmer; Alan R Shuldiner; Braxton D Mitchell
Journal:  J Pers Med       Date:  2015-07-28
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  4 in total

1.  Access and Management: Indigenous Perspectives on Genomic Data Sharing.

Authors:  Nanibaa' A Garrison; Krysta S Barton; Kathryn M Porter; Thyvu Mai; Wylie Burke; Stephanie Russo Carroll
Journal:  Ethn Dis       Date:  2019-12-12       Impact factor: 2.006

2.  Thought leader perspectives on benefits and harms in precision medicine research.

Authors:  Laura M Beskow; Catherine M Hammack; Kathleen M Brelsford
Journal:  PLoS One       Date:  2018-11-26       Impact factor: 3.240

3.  Return of individual genomic research results: are laws and policies keeping step?

Authors:  Adrian Thorogood; Gratien Dalpé; Bartha Maria Knoppers
Journal:  Eur J Hum Genet       Date:  2019-01-08       Impact factor: 4.246

4.  Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

Authors:  Richard Milne; Katherine I Morley; Mohamed A Almarri; Shamim Anwer; Jerome Atutornu; Elena E Baranova; Paul Bevan; Maria Cerezo; Yali Cong; Alessia Costa; Christine Critchley; Josepine Fernow; Peter Goodhand; Qurratulain Hasan; Aiko Hibino; Gry Houeland; Heidi C Howard; S Zakir Hussain; Charlotta Ingvoldstad Malmgren; Vera L Izhevskaya; Aleksandra Jędrzejak; Cao Jinhong; Megumi Kimura; Erika Kleiderman; Brandi Leach; Keying Liu; Deborah Mascalzoni; Álvaro Mendes; Jusaku Minari; Dianne Nicol; Emilia Niemiec; Christine Patch; Jack Pollard; Barbara Prainsack; Marie Rivière; Lauren Robarts; Jonathan Roberts; Virginia Romano; Haytham A Sheerah; James Smith; Alexandra Soulier; Claire Steed; Vigdis Stefànsdóttir; Cornelia Tandre; Adrian Thorogood; Torsten H Voigt; Nan Wang; Anne V West; Go Yoshizawa; Anna Middleton
Journal:  Genome Med       Date:  2021-05-25       Impact factor: 11.117
  4 in total

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