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Publication
Exploring pathways to trust: A tribal perspective on data sharing
Genetics in medicine: official journal of the American College of Medical Genetics -
Grant Abstract
iCONCUR: informed CONsent for Clinical data and biosample Use for Research
Being transparent about the use of data collected during clinical care is important to establish trust relationships between patients and researchers. We propose to develop a system to elicit patient…- Ambulatory Care Facilities
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Publication
Sharing by design: Data and decentralized commons
ScienceDuke University Center for Public Genomics. Grant number(s): P50HG003391 -
Publication
Data sharing to advance gene-targeted therapies in rare diseases
American Journal of Medical Genetics Part C: Seminars in Medical Genetics -
Publication
Policy for sharing data obtained in NIH supported or conducted genome-wide association studies (GWAS)
Federal RegisterDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Risk, trust, and altruism in genetic data sharing
Journal of Public Economic TheoryThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG008991 -
Publication
Population neuroscience: Strategies to promote data sharing while protecting privacy
Springer -
Publication
Indigenous data sovereignties and data sharing in biological anthropology
American Journal of Biological Anthropology -
Publication
Examining the power of the social imaginary through competing narratives of data ownership in health research
Journal of Law and the BiosciencesSorbie and colleagues explore whether notions of ownership impact the sharing of health-related data. -
Publication
GA4GH: International policies and standards for data sharing across genomic research and healthcare
Cell Genomics