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Grant Abstract
Data-Sharing and Data-Withholding in Genetics Research
The specific aims of this study are to: confirm and extend previous work on the prevalence and nature of data sharing and withholding in academic genetics and its subfields; investigate the factors…- Data Collection
- Genetics
- governmental health /scientific organization
- health /scientific organization
- health administration
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Grant Abstract
Data Sharing and Data Withholding in Genetics
The overall purpose of this grant is to explore the nature, extent and consequences of data-sharing and data- withholding in academic genetics and the other life sciences. The specific aims are: (1)…- American Medical Association
- Americas
- Attitude
- Behavior
- Biological Sciences
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Publication
The regulation of health data sharing in Africa: A comparative study
Journal of Law and the BiosciencesMcKay and colleagues compare legal and regulatory frameworks of health data sharing in South Africa, Ghana, Kenya, Nigeria, and Uganda; describe gaps and inconsistencies; and suggest improvements to… -
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Grant Abstract
Impact of Data Access Policies on Biobank Participation
The NIH data access policy for genetic research provides enormous opportunities for genetic investigators but also raises a number of challenges for educating and recruiting participants into large-…- Ambulatory Care Facilities
- Area
- base
- biobank
- Bioethics
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Publication
Access and management: Indigenous perspectives on genomic data sharing
Ethnicity & Disease -
Additional Resource
Repositories for Sharing Scientific Data
Explore a list of data sharing repositories supported by the NIH.- 2023 NIH Data Management and Sharing Policy
- data sharing
- National Institutes of Health (NIH)
- data repositories
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Grant Abstract
Exploring Attitudes About Data Disclosure and Data-Sharing in Genomics Research
Two major issues have garnered significant attention leading to the development of a range of policies regarding data disclosure and data-sharing in biomedical research. While the disclosure of data…- Biomedical Research
- Cities
- Clinical
- Clinical Research
- Communities
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Research Tool
Clinical Broad Data Sharing Consent Brochure, Clinical Genome Resource (ClinGen)
This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database). It describes key concepts outlined in the consent form, includes testimonials on…