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Technologies to Operationalize Indigenous Data Sovereignty
Throughout history, data about Indigenous communities, cultures, and territories have been collected and collated through research and surveillance as part of processes of colonisation and…- Indigenous data
- Indigenous Communities
- Big Data
- decolonization
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Research Tool
California Consumers’ Views of Data Sharing for Healthcare And Research Survey
Kim, Joseph, and Ohno-Machado created the California Consumers’ Views of Data Sharing for Healthcare And Research Survey to assess technology use, opinions about electronic health records and… -
Publication
Impact of HIPAA's minimum necessary standard on genomic data sharing
Genet MedClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): UO1HG008657, UO1HG006507, U01HG007307 -
Publication
"I just assumed this was already being done": Canadian patient preferences for enhanced data sharing for precision oncology
JCO Precision Oncologyby Samantha Pollard, Morgan Ehman, Anna Hermansen, Deirdre Weymann, Emanuel Krebs, Cheryl Ho, Howard J. Lim, Steven Jones, Yvonne Bombard, Timothy P. Hanna, Chiquita Hessels, Holly Longstaff,… -
Publication
Data sharing considerations and practice among health researchers in Africa: A scoping review
Clinical Genetics -
Publication
Ethical, legal, and social issues (ELSI) of responsible data sharing involving children in genomics: A systematic literature review of reasons
AJOB Empirical Bioethics -
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News
ELSI Presentations at ASBH 2023
The following is a list of ELSI and ELSI-related sessions at ASBH 2023. Please email us at [email protected] if you would like to add your presentation. Thursday, October 12, 2023 ELSI Affinity… -
Video
ELSIconversations: Responsible Stewardship: Establishing Standard Data Elements and a Community of Practice
In the final session, panelists lead the charge for establishing a community of practice that is best able to share experiences across programs. Topics include key data elements, reporting and…- community
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News
Share Your ELSI Research Tools
I write today to encourage ELSI scholars to deposit their published and unpublished research tools into the Research Tools repository on ELSIhub. Since 1990, the ELSI…- research tools