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Research Tool
"Seeing Your Data", Video for American Indian and Alaska Native Participants, All of Us Research Program
"Seeing Your Data" is a 34 second video created by the All of Us Research Program (All of Us) to provide information to American Indian and Alaska Native participants about which personal… -
Additional Resource
Workshop Proceedings, Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2018)
This National Academies Press publication summarizes the proceedings of a workshop that explored data management in international research agreements. The workshop was convened by the Working Group…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Publication
Opportunities for promoting open data in the Caribbean through biobanks
Pan American Journal of Public Health -
Publication
Is benefit sharing with research participants lawful in South Africa? An unexplored question in the governance of genomics research
Journal of Law and the BiosciencesThaldar and Shozi analyze section 60(4) of the South African National Health Act and conclude that in the absence of a political solution, it renders any benefit sharing agreement “an empty promise.” -
Publication
Stewardship of patient genomic data: A policy statement of the American College of Medical Genetics and Genomics (ACMG)
Genetics in Medicine -
Publication
Proteomics researchers now agree on some aspects of data sharing
Journal of Proteome ResearchDigital 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… -
Grant Abstract
Managing Genetic Information: Policies for US Nurses
The purpose of this project is to address the professional dilemmas of nurses related to genetic information about patients and their families. Continuing education in genetics is not widely…- Ethics
- Genetic Counseling
- genetic disorder
- Genetics
- health care professional practice
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Grant Abstract
The Mouse as a Paradigm
No single research tool has played a more significant role in genetics and genomics research and development than the genetically engineered research mouse, so it is not surprising that no other…- Clinical Research
- community
- experience
- genetically modified animals
- Genetics
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Publication
A technology policy perspective on the NIH gene patenting controversy
University of Pittsburgh Law ReviewDigital 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
Sharing data, DNA and tissue samples
Journal of Empirical Research on Human Research EthicsDigital 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…