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Publication
Management of natural and bioterrorism induced pandemics
BioethicsDigital 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
A family-centered model for sharing genetic risk
J Law Med EthicsClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): R21HG006594-01, 1-R01-CA154517 -
Publication
Genetic data are not always personal—Disaggregating the identifiability and sensitivity of genetic data
Journal of Law and the Biosciences -
Publication
Immortal data: A qualitative exploration of patients' understandings of genomic data
European Journal of Human Genetics -
Publication
Performance of the shared decision-making process scale for use in evaluation of hereditary cancer genetic testing decisions
Journal of Genetic Counseling -
Additional Resource
Global Alliance for Genomics & Health (GA4GH)
The Global Alliance for Genomics and Health (GA4GH) is an international, non-profit alliance of 600+ organizations working to create frameworks and standards to enable the responsible, voluntary, and…- genomic data sharing
- Human Rights
- toolkit
- policy-framing
- genomic data
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Publication
Consanguinity and willingness to perform premarital genetic screening in Sudan
European Journal of Human Genetics -
Research Tool
Data Dictionary: ECS - Carrier Screening Decision-making: An Experimental Study of Media Influences on Conversational Development and Outcomes
REDCap data dictionary for the project "Carrier Screening Decision-making: An Experimental Study of Media Influences on Conversational Development and Outcomes." The data dictionary… -
Publication
Defining the spectrum of genome policy
Nat. Rev. Genet.Duke University Center for Public Genomics. Grant number(s): P50HG003391 -
Video
ELSIcon2022 Panel: The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
ELSIcon2022 • Panel • May 27, 2022 Katherine Blinzinsky, Subhashini Chandrasekharan, Sonya Jooma The All of Us Research Program is an ambitious effort to enroll one million or more…- Pre-Recorded
- Panel
- Data and data stewardship
- precision medicine