Literature DB >> 30994063

Genomic Data-Sharing Practices.

Angela G Villanueva1, Robert Cook-Deegan1, Jill O Robinson1, Amy L McGuire1, Mary A Majumder1.   

Abstract

Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

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Mesh：

Year:  2019        PMID： 30994063      PMCID： PMC6730666          DOI： 10.1177/1073110519840482

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


  16 in total

1.  Sharing Clinical Trial Data: A Proposal From the International Committee of Medical Journal Editors.

Authors:  Darren B Taichman; Joyce Backus; Christopher Baethge; Howard Bauchner; Peter W de Leeuw; Jeffrey M Drazen; John Fletcher; Frank A Frizelle; Trish Groves; Abraham Haileamlak; Astrid James; Christine Laine; Larry Peiperl; Anja Pinborg; Peush Sahni; Sinan Wu
Journal:  Ann Intern Med       Date:  2016-01-26       Impact factor: 25.391

2.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

3.  Genes, the environment and personalized medicine: We need to harness both environmental and genetic data to maximize personal and population health.

Authors:  Chris Carlsten; Michael Brauer; Fiona Brinkman; Jeffrey Brook; Denise Daley; Kelly McNagny; Mandy Pui; Diana Royce; Tim Takaro; Judah Denburg
Journal:  EMBO Rep       Date:  2014-06-06       Impact factor: 8.807

4.  Have we asked too much of consent?

Authors:  Barbara A Koenig
Journal:  Hastings Cent Rep       Date:  2014 Jul-Aug       Impact factor: 2.683

5.  Linking Broad Consent to Biobank Governance: Support From a Deliberative Public Engagement in California.

Authors:  Sarah B Garrett; Daniel Dohan; Barbara A Koenig
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

6.  Redefining genomic privacy: trust and empowerment.

Authors:  Yaniv Erlich; James B Williams; David Glazer; Kenneth Yocum; Nita Farahany; Maynard Olson; Arvind Narayanan; Lincoln D Stein; Jan A Witkowski; Robert C Kain
Journal:  PLoS Biol       Date:  2014-11-04       Impact factor: 8.029

7.  Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.

Authors:  Isabelle Budin-Ljøsne; Harriet J A Teare; Jane Kaye; Stephan Beck; Heidi Beate Bentzen; Luciana Caenazzo; Clive Collett; Flavio D'Abramo; Heike Felzmann; Teresa Finlay; Muhammad Kassim Javaid; Erica Jones; Višnja Katić; Amy Simpson; Deborah Mascalzoni
Journal:  BMC Med Ethics       Date:  2017-01-25       Impact factor: 2.652

8.  Moving beyond Bermuda: sharing data to build a medical information commons.

Authors:  Robert Cook-Deegan; Amy L McGuire
Journal:  Genome Res       Date:  2017-04-03       Impact factor: 9.043

9.  Framework for responsible sharing of genomic and health-related data.

Authors:  Bartha Maria Knoppers
Journal:  Hugo J       Date:  2014-10-17

10.  Registered access: a 'Triple-A' approach.

Authors:  Stephanie O M Dyke; Emily Kirby; Mahsa Shabani; Adrian Thorogood; Kazuto Kato; Bartha M Knoppers
Journal:  Eur J Hum Genet       Date:  2016-09-28       Impact factor: 4.246
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  2 in total

1.  A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada.

Authors:  Vasiliki Rahimzadeh; Gillian Bartlett; Bartha Maria Knoppers
Journal:  BMC Med Ethics       Date:  2021-06-09       Impact factor: 2.652

2.  Sensor Data Integration: A New Cross-Industry Collaboration to Articulate Value, Define Needs, and Advance a Framework for Best Practices.

Authors:  Ieuan Clay; Christian Angelopoulos; Anne Lord Bailey; Aaron Blocker; Simona Carini; Rodrigo Carvajal; David Drummond; Kimberly F McManus; Ingrid Oakley-Girvan; Krupal B Patel; Phillip Szepietowski; Jennifer C Goldsack
Journal:  J Med Internet Res       Date:  2021-11-09       Impact factor: 5.428
  2 in total

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