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Consensus Study Report, Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2009)
This National Academies Press publication documents the evidence-based consensus of a committee of experts on research data management and stewardship in the context of digital technologies. It…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Publication
Patients’ and public views and attitudes towards the sharing of health data for research: A narrative review of the empirical evidence
Journal of Medical Ethics -
Publication
Video education about genetic privacy and patient perspectives about sharing prenatal genetic data: a randomized trial
American Jouenal of Obstetrics Gynecology -
Publication
A systematic literature review of the ‘commercialisation effect’ on public attitudes towards biobank and genomic data repositories
Public Understanding of Science -
Research Tool
Data Sharing Video for American Indian and Alaska Native Participants, All of Us Research Program (Spanish Version)
This 29 second video provides information for American Indian and Alaska Native participants about the construction of public and scientific databases of participant data by the All of Us Research… -
Publication
Pragmatic tools for sharing genomic research results with the relatives of living and deceased research participants
The Journal of Law, Medicine & Ethics -
Publication
Core elements of participant consent documents for Canadian human genomics research and the National Human Genome Library: Guidance for policy
Canadian Medical Association Journal -
Publication
Pragmatic tools for sharing genomic research results with the relatives of living and deceased research participants
J Law Med EthicsClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): 1R01CA154517