Literature DB >> 22174311

dbGaP data access requests: a call for greater transparency.

Lorelei Walker1, Helene Starks, Kathleen M West, Stephanie M Fullerton.   

Abstract

The scientific and public health benefits of mandatory data-sharing mechanisms must be actively demonstrated. To this end, we manually reviewed 2724 data access requests approved between June 2007 and August 2010 through the U.S. National Center for Biotechnology Information database of genotypes and phenotypes (dbGaP). Our analysis demonstrates that dbGaP enables a wide range of secondary research by investigators from academic, governmental, and nonprofit and for-profit institutions in the United States and abroad. However, limitations in public reporting preclude the tracing of outcomes from secondary research to longer-term translational benefit.

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Mesh:

Year:  2011        PMID: 22174311      PMCID: PMC3432400          DOI: 10.1126/scitranslmed.3002788

Source DB:  PubMed          Journal:  Sci Transl Med        ISSN: 1946-6234            Impact factor:   17.956


  9 in total

1.  Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience.

Authors:  Amy L McGuire; Melissa Basford; Lynn G Dressler; Stephanie M Fullerton; Barbara A Koenig; Rongling Li; Cathy A McCarty; Erin Ramos; Maureen E Smith; Carol P Somkin; Carol Waudby; Wendy A Wolf; Ellen Wright Clayton
Journal:  Genome Res       Date:  2011-06-01       Impact factor: 9.043

2.  The NCBI dbGaP database of genotypes and phenotypes.

Authors:  Matthew D Mailman; Michael Feolo; Yumi Jin; Masato Kimura; Kimberly Tryka; Rinat Bagoutdinov; Luning Hao; Anne Kiang; Justin Paschall; Lon Phan; Natalia Popova; Stephanie Pretel; Lora Ziyabari; Moira Lee; Yu Shao; Zhen Y Wang; Karl Sirotkin; Minghong Ward; Michael Kholodov; Kerry Zbicz; Jeffrey Beck; Michael Kimelman; Sergey Shevelev; Don Preuss; Eugene Yaschenko; Alan Graeff; James Ostell; Stephen T Sherry
Journal:  Nat Genet       Date:  2007-10       Impact factor: 38.330

3.  Protecting aggregate genomic data.

Authors:  Elias A Zerhouni; Elizabeth G Nabel
Journal:  Science       Date:  2008-09-04       Impact factor: 47.728

4.  Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection.

Authors:  Amy A Lemke; Susan B Trinidad; Karen L Edwards; Helene Starks; Georgia L Wiesner
Journal:  J Empir Res Hum Res Ethics       Date:  2010-03       Impact factor: 1.742

5.  Meeting the governance challenges of next-generation biorepository research.

Authors:  Stephanie M Fullerton; Nicholas R Anderson; Greg Guzauskas; Dena Freeman; Kelly Fryer-Edwards
Journal:  Sci Transl Med       Date:  2010-01-20       Impact factor: 17.956

6.  Glad you asked: participants' opinions of re-consent for dbGap data submission.

Authors:  Evette J Ludman; Stephanie M Fullerton; Leslie Spangler; Susan Brown Trinidad; Monica M Fujii; Gail P Jarvik; Eric B Larson; Wylie Burke
Journal:  J Empir Res Hum Res Ethics       Date:  2010-09       Impact factor: 1.742

7.  Research ethics. Research practice and participant preferences: the growing gulf.

Authors:  S B Trinidad; S M Fullerton; E J Ludman; G P Jarvik; E B Larson; W Burke
Journal:  Science       Date:  2011-01-21       Impact factor: 47.728

8.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

9.  Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.

Authors:  Nils Homer; Szabolcs Szelinger; Margot Redman; David Duggan; Waibhav Tembe; Jill Muehling; John V Pearson; Dietrich A Stephan; Stanley F Nelson; David W Craig
Journal:  PLoS Genet       Date:  2008-08-29       Impact factor: 5.917

  9 in total
  13 in total

1.  Use of the National Heart, Lung, and Blood Institute Data Repository.

Authors:  Sean A Coady; George A Mensah; Elizabeth L Wagner; Miriam E Goldfarb; Denise M Hitchcock; Carol A Giffen
Journal:  N Engl J Med       Date:  2017-03-29       Impact factor: 91.245

2.  The Philadelphia Neurodevelopmental Cohort: A publicly available resource for the study of normal and abnormal brain development in youth.

Authors:  Theodore D Satterthwaite; John J Connolly; Kosha Ruparel; Monica E Calkins; Chad Jackson; Mark A Elliott; David R Roalf; Ryan Hopson; Karthik Prabhakaran; Meckenzie Behr; Haijun Qiu; Frank D Mentch; Rosetta Chiavacci; Patrick M A Sleiman; Ruben C Gur; Hakon Hakonarson; Raquel E Gur
Journal:  Neuroimage       Date:  2015-03-31       Impact factor: 6.556

3.  The International Serious Adverse Events Consortium's data sharing model.

Authors:  Jorge L Contreras; Aris Floratos; Arthur L Holden
Journal:  Nat Biotechnol       Date:  2013-01       Impact factor: 54.908

4.  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

5.  One Size Doesn't Fit All: Measuring Individual Privacy in Aggregate Genomic Data.

Authors:  Sean Simmons; Bonnie Berger
Journal:  Proc IEEE Symp Secur Priv Workshops       Date:  2015-07-20

Review 6.  Evolving approaches to the ethical management of genomic data.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun
Journal:  Trends Genet       Date:  2013-02-28       Impact factor: 11.639

7.  Making data sharing work: the FCP/INDI experience.

Authors:  Maarten Mennes; Bharat B Biswal; F Xavier Castellanos; Michael P Milham
Journal:  Neuroimage       Date:  2012-10-30       Impact factor: 6.556

8.  The National Institutes of Health's Biomedical Translational Research Information System (BTRIS): design, contents, functionality and experience to date.

Authors:  James J Cimino; Elaine J Ayres; Lyubov Remennik; Sachi Rath; Robert Freedman; Andrea Beri; Yang Chen; Vojtech Huser
Journal:  J Biomed Inform       Date:  2013-11-19       Impact factor: 6.317

Review 9.  Exploring pathways to trust: a tribal perspective on data sharing.

Authors:  Rosalina James; Rebecca Tsosie; Puneet Sahota; Myra Parker; Denise Dillard; Ileen Sylvester; John Lewis; Joseph Klejka; LeeAnna Muzquiz; Polly Olsen; Ron Whitener; Wylie Burke
Journal:  Genet Med       Date:  2014-05-15       Impact factor: 8.822

10.  Enabling genomic-phenomic association discovery without sacrificing anonymity.

Authors:  Raymond D Heatherly; Grigorios Loukides; Joshua C Denny; Jonathan L Haines; Dan M Roden; Bradley A Malin
Journal:  PLoS One       Date:  2013-02-06       Impact factor: 3.240

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