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Publication
Genomics and health data governance in Africa: Democratize the use of big data and popularize public engagement
Hastings Center Report -
Video
Benefit-sharing and Pharmaceutical Development in Africa: What Does Equity Mean?
ELSI Friday Forum • November 12, 2021 There is an ongoing concern that collaborative genomic research conducted in lower- and middle-income countries by partners in high-income countries, is…- benefit sharing
- African genetics
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Publication
Expanding access to large-scale genomic data while promoting privacy: A game theoretic approach
Am J Hum Genet -
Publication
Science's policy on access to private data
NatureDigital 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
Gene expression profiling and breast cancer care: What are the potential benefits and policy implications?
Genetics in Medicine -
Publication
Game theory for privacy-preserving genomic data
Elsevier PressThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG009012 -
Additional Resource
Policy Statement, Ethical and policy issues in genetic testing and screening of children, American Academy of Pediatrics (AAP) and the American College of Medical Genetics and Genomics (AMCG)
This policy statement, released in March 2013 and reaffirmed in June 2018, contains recommendations on the genetic testing and screening of children developed collaboratively the American Academy of…- policy statement
- genetic testing
- Genetic Screening
- Children
- American Academy of Pediatrics
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Publication
Synthetic health data: Real ethical promise and peril
Hastings Center Reportby Daniel Susser, Daniel S Schiff, Sara Gerke, Laura Y Cabrera, I Glenn Cohen, Megan Doerr, Jordan Harrod, Kristin Kostick-Quenet, Jasmine McNealy, Michelle N Meyer, W Nicholson Price II, &… -
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Publication
iCONCUR: Informed consent for clinical data and bio-sample use for research
J Am Med Inform Assoc