Open sharing of genomic data: Who does it and why?

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Last Posted: Jun 08, 2017

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• 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
• Myriad take two: Can genomic databases remain secret?  
  Christi J. Guerrini, et al, Science, May 12, 2017
• Open sharing of genomic data: Who does it and why?  
  Haeusermann Tobias et al. PloS one 2017 12(5) e0177158
• Massive-scale genomic data sharing to improve rare disease diagnosis  
  D MacArthur VIDEO presentation, Scripps Institute, Future of Genomic Medicine 2017
• Sharing Genome Data  
  C Wright, TGMI Blog Post, April 2017
• Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.  
  Cook-Deegan Robert et al. Annual review of genomics and human genetics 2017 Apr
• De-identified genomic data sharing: the research participant perspective.  
  Goodman Deborah et al. Journal of community genetics 2017 Apr
• Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.  
  Sanderson Saskia C et al. American journal of human genetics 2017 Mar 100(3) 414-427
• A qualitative study of adolescents' understanding of biobanks and their attitudes toward participation, re-contact, and data sharing.  
  Murad Andrea M et al. American journal of medical genetics. Part A 2017 Apr 173(4) 930-937
• Ethical Legal and Social Issues of Biobanking: Past, Present, and Future.  
  Bledsoe Marianna J et al. Biopreservation and biobanking 2017 Apr
• Bedside Back to Bench: Building Bridges between Basic and Clinical Genomic Research.  
  Manolio Teri A et al. Cell 2017 Mar 169(1) 6-12

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