Literature DB >> 21736136

Broad data sharing in genetic research: views of institutional review board professionals.

Amy A Lemke1, Maureen E Smith, Wendy A Wolf, Susan Brown Trinidad.   

Abstract

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Year:  2011        PMID： 21736136      PMCID： PMC3394177     

Source DB:  PubMed          Journal:  IRB        ISSN： 0193-7758


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  8 in total

1.  An evaluation of the current state of genomic data privacy protection technology and a roadmap for the future.

Authors:  Bradley A Malin
Journal:  J Am Med Inform Assoc       Date:  2004-10-18       Impact factor: 4.497

2.  Part III: meeting the challenge when data sharing is required.

Authors:  Virginia A de Wolf; Joan E Sieber; Philip M Steel; Alvan O Zarate
Journal:  IRB       Date:  2006 Mar-Apr

3.  Ethics. Identifiability in genomic research.

Authors:  William W Lowrance; Francis S Collins
Journal:  Science       Date:  2007-08-03       Impact factor: 47.728

4.  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

5.  Attitudes toward genetic research review: results from a survey of human genetics researchers.

Authors:  K L Edwards; A A Lemke; S B Trinidad; S M Lewis; H Starks; M T Quinn Griffin; G L Wiesner
Journal:  Public Health Genomics       Date:  2011-04-11       Impact factor: 2.000

6.  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

7.  Problematic variation in local institutional review of a multicenter genetic epidemiology study.

Authors:  Rita McWilliams; Julie Hoover-Fong; Ada Hamosh; Suzanne Beck; Terri Beaty; Garry Cutting
Journal:  JAMA       Date:  2003-07-16       Impact factor: 56.272

8.  Simplifying informed consent for biorepositories: stakeholder perspectives.

Authors:  Laura M Beskow; Joëlle Y Friedman; N Chantelle Hardy; Li Lin; Kevin P Weinfurt
Journal:  Genet Med       Date:  2010-09       Impact factor: 8.822
  8 in total
  8 in total

1.  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

2.  Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.

Authors:  Stephanie A Kraft; Mildred K Cho; Katherine Gillespie; Meghan Halley; Nina Varsava; Kelly E Ormond; Harold S Luft; Benjamin S Wilfond; Sandra Soo-Jin Lee
Journal:  Am J Bioeth       Date:  2018-04       Impact factor: 11.229

3.  IRB chairs' perspectives on genotype-driven research recruitment.

Authors:  Laura M Beskow; Emily E Namey; Patrick R Miller; Daniel K Nelson; Alexandra Cooper
Journal:  IRB       Date:  2012 May-Jun

4.  A comparison of views regarding the use of de-identified data.

Authors:  Deborah Goodman; Catherine O Johnson; Deborah Bowen; Megan Smith; Lari Wenzel; Karen L Edwards
Journal:  Transl Behav Med       Date:  2018-01-29       Impact factor: 3.046

5.  To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region.

Authors:  Mai H Oushy; Rebecca Palacios; Alan E C Holden; Amelie G Ramirez; Kipling J Gallion; Mary A O'Connell
Journal:  PLoS One       Date:  2015-09-17       Impact factor: 3.240

6.  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

7.  From the principles of genomic data sharing to the practices of data access committees.

Authors:  Mahsa Shabani; Bartha Maria Knoppers; Pascal Borry
Journal:  EMBO Mol Med       Date:  2015-05       Impact factor: 12.137

Review 8.  The translational potential of research on the ethical, legal, and social implications of genomics.

Authors:  Wylie Burke; Paul Appelbaum; Lauren Dame; Patricia Marshall; Nancy Press; Reed Pyeritz; Richard Sharp; Eric Juengst
Journal:  Genet Med       Date:  2014-06-19       Impact factor: 8.822
  8 in total

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