Switch to: References

Add citations

You must login to add citations.
  1. A Policy Delphi Study to Validate the Key Implications of Data Sharing (KIDS) Framework for Pediatric Genomics in Canada.Bartha Maria Knoppers, Gillian Bartlett & Vasiliki Rahimzadeh - 2021 - BMC Medical Ethics 22 (1):1-12.
    BackgroundThe highly sensitive nature of genomic and associated clinical data, coupled with the consent-related vulnerabilities of children together accentuate ethical, legal and social issues concerning data sharing. The Key Implications of Data Sharing framework was therefore developed to address a need for institutional guidance on genomic data governance but has yet to be validated among data sharing practitioners in practice settings. This study qualitatively explored areas of consensus and dissensus of the KIDS Framework from the perspectives of Canadian clinician-scientists, genomic (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • Diversity, Profit, Control: An Empirical Study of Industry Employees’ Views on Ethics in Private Sector Genomics.Alexis Walker - 2022 - AJOB Empirical Bioethics 13 (3):166-178.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  • Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
    Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  • Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
    Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   4 citations