Considering the Benefits and Risks of Research Participants' Access to Sequence Data

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Last Posted: Oct 26, 2017

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• Considering the Benefits and Risks of Research Participants' Access to Sequence Data.  
  Haga Susanne B et al. Genetic testing and molecular biomarkers 2017 Oct
• Molecular Tumor Boards: Current Practice and Future Needs.  
  van der Velden D L et al. Annals of oncology : official journal of the European Society for Medical Oncology 2017 Sep
• Navigating social and ethical challenges of biobanking for human microbiome research.  
  Chuong Kim H et al. BMC medical ethics 2017 Jan 18(1) 1
• GA4GH Announces New Strategic Plan, Vision To Create Standards  
  Bio IT Word, Oct 17, 2017
• GA4GH Strikes Formal Collaborations with 15 International Genomic Data Initiatives  
  Global Alliance for Genomics and Health, Oct 15, 2017
• Care in Specialized Centers and Data Sharing Increase Agreement in Hypertrophic Cardiomyopathy Genetic Test Interpretation.  
  Furqan Aisha et al. Circulation. Cardiovascular genetics 2017 Oct 10(5)
• Response to “Proposal to Update Data Management of Genomic Summary Results Under the NIH Genomic Data Sharing Policy  
  D MacArthur, Broad Institute, Oct 10, 2017
• Twenty-First Century Precision Medicine in Oncology: Genomic Profiling in Patients With Cancer.  
  Borad Mitesh J et al. Mayo Clinic proceedings 2017 Oct 92(10) 1583-1591
• Sharing genetic information  
  N Rahman, TGMI Blog Post, Oct 6, 2017
• NIH seeks comment on proposal to update data management of genomic summary results  
  NIH, Sep 21, 2017
• Genomic medicine and data sharing.  
  Raza Sobia et al. British medical bulletin 2017 Sep 123(1) 35-45
• Impact of HIPAA's minimum necessary standard on genomic data sharing.  
  Evans Barbara J et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Sep
• "That is why I have trust": unpacking what 'trust' means to participants in international genetic research in Pakistan and Denmark.  
  Sheikh Zainab et al. Medicine, health care, and philosophy 2017 Sep
• Assessment of the impact of shared data on the scientific literature  
  M Milham et al, BioRxIV, September 4, 2017
• 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

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