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Video
ELSIcon2022 Flash: Conceptualization and Measurement of Genetic Literacy
ELSIcon2022 • Flash • May 27, 2022 Brianne Daly, Kimberly Kaphingst Genetic literacy, a construct often thought of as genetics-related knowledge and skills, is critical to individuals being able to…- Language and categorization
- Methodology and study design
- Flash
- Pre-Recorded
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Video
Racial and Ethnic Classification in the Clinic: Is it Just?
Natalie Pino, BA - National Human Genome Research Institute ELSIconversations - March 26, 2021 The United States has a long history of institutionally classifying people by racial and ethnic (R/E)…- racial /ethnic difference
- race and genetics
- clinical challenges
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Additional Resource
Workshop Proceedings, Strategies for Engagement of Non-Traditional Partners in the Research Enterprise, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2018)
This National Academies Press publication summarizes the proceedings of a workshop that explored issues associated with partnerships between government, university, and industry in the U.S. research…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Research Tool
Codebook: Assessment of the Reading of the Informed Consent Play
Rothwell and colleagues assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the… -
Additional Resource
Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics (CIRGE)
Mildred Cho was Principal Investigator of the Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics (CIRGE). The goals of this center were to 1) to…- CEER
- Stanford University
- Mildred Cho
- Stanford Center for Biomedical Ethics
- Behavioral genomics
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Publication
Spinocerebellar ataxia: Patient and health professional perspectives on whether and how patents affect access to clinical genetic testing. Peer-reviewed case study commissioned by the SACGHS
Genetics in MedicineDuke University Center for Public Genomics. Grant number(s): P50HG003391 -
Publication
Impact of gene patents and licensing practices on access to genetic testing and carrier screening for Tay-Sachs and Canavan disease. Peer-reviewed case study commissioned by the SACGHS
Genetics in MedicineDuke University Center for Public Genomics. Grant number(s): P50HG003391 -
Video
Precision Medicine Research, ‘All of Us’, and Inclusion
A Discussion for Journalists • November 16, 2021 This is the third in a series "Genomics in Society: New Developments, New Questions: Discussions with Journalists" hosted by Hastings Center, in…- All of Us
- precision medicine research
- inclusion
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Additional Resource
Consensus Study Report, A Survey of Attitudes and Actions on Dual Use Research in the Life Sciences, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2009)
This National Academies Press publication documents the results of a 2007 survey of American Association for the Advancement of Science (AAAS) members in the life sciences. The survey measured…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding