Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?

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Last Posted: Aug 31, 2017

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• Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?  
  Shabani Mahsa et al. Biopreservation and biobanking 2017 Aug
• Clinical Trial Data as Public Goods: Fair Trade and the Virtual Knowledge Bank as a Solution to the Free Rider Problem - A Framework for the Promotion of Innovation by Facilitation of Clinical Trial Data Sharing among Biopharmaceutical Companies in the Era of Omics and Big Data.  
  Evangelatos Nikolaos et al. Public health genomics 2016 19(4) 211-9
• Controlling the signal: Practical privacy protection of genomic data sharing through Beacon services.  
  Wan Zhiyu et al. BMC medical genomics 2017 Jul 10(Suppl 2) 39
• Building consensus on genomic data sharing  
  PHG Foundation, August 2, 2017
• Data sharing as a national quality improvement program: reporting on BRCA1 and BRCA2 variant-interpretation comparisons through the Canadian Open Genetics Repository (COGR).  
  Lebo Matthew S et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Jul
• A new era in the interpretation of human genomic variation  
  Science Mag, July 17, 2017
• Sharing Clinical Research Data—Finding the Right Balance  
  B Lo et al, JAMA Internal Medicine, July 17, 2017
• Security controls in an integrated Biobank to protect privacy in data sharing: rationale and study design.  
  Takai-Igarashi Takako et al. BMC medical informatics and decision making 2017 Jul 17(1) 100
• The dbGaP data browser: a new tool for browsing dbGaP controlled-access genomic data.  
  Wong Kira M et al. Nucleic acids research 2017 Jan 45(D1) D819-D826
• Empty rhetoric over data sharing slows science  
  (Editorial) Nature, Jun 15, 2017.
• Data Sharing Statements for Clinical Trials: A Requirement of the International Committee of Medical Journal Editors.  
  Taichman Darren B et al. JAMA 2017 Jun
• Reconciling evidence-based medicine and precision medicine in the era of big data: challenges and opportunities.  
  Beckmann Jacques S et al. Genome medicine 2016 8(1) 134
• Sharing data under the 21st Century Cures Act  
  MA Majumder et al, Genetics in Medicine, May 25, 2017
• From Rosalind Franklin to Barack Obama: Data Sharing Challenges and Solutions in Genomics and Personalised Medicine.  
  Lawler Mark et al. The New bioethics : a multidisciplinary journal of biotechnology and the body 2017 Apr 23(1) 64-73
• Sharing Clinical and Genomic Data on Cancer — The Need for Global Solutions  
  The Clinical Cancer Genome Task Team of the Global Alliance for Genomics and Health, N Engl J Med May 25, 2017
• Application of Panel-Based Tests for Inherited Risk of Cancer.  
  Shah Payal D et al. Annual review of genomics and human genetics 2017 May

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