Literature DB >> 19308065

Data sharing in genomics--re-shaping scientific practice.

Jane Kaye1, Catherine Heeney, Naomi Hawkins, Jantina de Vries, Paula Boddington.   

Abstract

Funding bodies have recently introduced a requirement that data sharing must be a consideration of all funding applications in genomics. As with all new developments this condition has had an impact on scientific practice, particularly in the area of publishing and in the conduct of research. We discuss the challenges that must be addressed if the full benefits of data sharing, as envisaged by funders, are to be realized.

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Year:  2009        PMID: 19308065      PMCID: PMC2672783          DOI: 10.1038/nrg2573

Source DB:  PubMed          Journal:  Nat Rev Genet        ISSN: 1471-0056            Impact factor:   53.242


  22 in total

1.  Data withholding in academic genetics: evidence from a national survey.

Authors:  Eric G Campbell; Brian R Clarridge; Manjusha Gokhale; Lauren Birenbaum; Stephen Hilgartner; Neil A Holtzman; David Blumenthal
Journal:  JAMA       Date:  2002 Jan 23-30       Impact factor: 56.272

2.  Genetics. No longer de-identified.

Authors:  Amy L McGuire; Richard A Gibbs
Journal:  Science       Date:  2006-04-21       Impact factor: 47.728

3.  Reuse of samples: ethical issues encountered by two institutional ethics review committees in Kenya.

Authors:  Simon K Langat
Journal:  Bioethics       Date:  2005-10       Impact factor: 1.898

4.  The complexities of ethical evaluation of genomics research.

Authors:  R Hoedemaekers; B Gordijn; Y Hekster; F van Agt
Journal:  HEC Forum       Date:  2006-03

5.  Responsibilities and obligations of using human research specimens transported across national boundaries.

Authors:  A S Muula; J M Mfutso-Bengo
Journal:  J Med Ethics       Date:  2007-01       Impact factor: 2.903

Review 6.  Share and share alike: deciding how to distribute the scientific and social benefits of genomic data.

Authors:  Morris W Foster; Richard R Sharp
Journal:  Nat Rev Genet       Date:  2007-07-03       Impact factor: 53.242

7.  Partnership in U.K. Biobank: a third way for genomic property?

Authors:  David E Winickoff
Journal:  J Law Med Ethics       Date:  2007       Impact factor: 1.718

8.  New models of collaboration in genome-wide association studies: the Genetic Association Information Network.

Authors:  Teri A Manolio; Laura Lyman Rodriguez; Lisa Brooks; Gonçalo Abecasis; Dennis Ballinger; Mark Daly; Peter Donnelly; Stephen V Faraone; Kelly Frazer; Stacey Gabriel; Pablo Gejman; Alan Guttmacher; Emily L Harris; Thomas Insel; John R Kelsoe; Eric Lander; Norma McCowin; Matthew D Mailman; Elizabeth Nabel; James Ostell; Elizabeth Pugh; Stephen Sherry; Patrick F Sullivan; John F Thompson; James Warram; David Wholley; Patrice M Milos; Francis S Collins
Journal:  Nat Genet       Date:  2007-09       Impact factor: 38.330

9.  Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls.

Authors: 
Journal:  Nature       Date:  2007-06-07       Impact factor: 49.962

10.  Ethical and practical issues associated with aggregating databases.

Authors:  David R Karp; Shelley Carlin; Robert Cook-Deegan; Daniel E Ford; Gail Geller; David N Glass; Hank Greely; Joel Guthridge; Jeffrey Kahn; Richard Kaslow; Cheryl Kraft; Kathleen Macqueen; Bradley Malin; Richard H Scheuerman; Jeremy Sugarman
Journal:  PLoS Med       Date:  2008-09-23       Impact factor: 11.069

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  108 in total

Review 1.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

Review 2.  Applications of targeted gene capture and next-generation sequencing technologies in studies of human deafness and other genetic disabilities.

Authors:  Xi Lin; Wenxue Tang; Shoeb Ahmad; Jingqiao Lu; Candice C Colby; Jason Zhu; Qing Yu
Journal:  Hear Res       Date:  2012-01-14       Impact factor: 3.208

3.  Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel.

Authors:  Stephanie M Fullerton; Sandra S-J Lee
Journal:  BMC Med Ethics       Date:  2011-09-26       Impact factor: 2.652

4.  Reproducible research in medical imaging.

Authors:  Kingshuk Roy Choudhury; Ray Gibson
Journal:  Mol Imaging Biol       Date:  2012-08       Impact factor: 3.488

5.  Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent.

Authors:  Bartha Maria Knoppers
Journal:  EMBO Rep       Date:  2010-05-07       Impact factor: 8.807

6.  Sharing health data: good intentions are not enough.

Authors:  Elizabeth Pisani; Carla AbouZahr
Journal:  Bull World Health Organ       Date:  2010-06       Impact factor: 9.408

7.  The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.

Authors:  Kathryn Maxson Jones; Rachel A Ankeny; Robert Cook-Deegan
Journal:  J Hist Biol       Date:  2018-12       Impact factor: 1.326

Review 8.  Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries.

Authors:  Nola M Ries; Jane LeGrandeur; Timothy Caulfield
Journal:  BMC Med Ethics       Date:  2010-03-23       Impact factor: 2.652

9.  MetaSeq: privacy preserving meta-analysis of sequencing-based association studies.

Authors:  Angad Pal Singh; Samreen Zafer; Itsik Pe'er
Journal:  Pac Symp Biocomput       Date:  2013

Review 10.  Routes for breaching and protecting genetic privacy.

Authors:  Yaniv Erlich; Arvind Narayanan
Journal:  Nat Rev Genet       Date:  2014-05-08       Impact factor: 53.242

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