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Research Tool
ELSI Research Methods Questionnaire
Cho and colleagues created this questionnaire to understand the research methodologies currently being used in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics. -
Publication
Proceedings [of the] International Bioethics Committee of UNESCO (IBC), seventh session
UNESCODigital 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… -
News
ELSI Journal Club Resources - March 28, 2025
Session’s Featured Paper: Opportunistic genomic screening has clinical utility: An interventional cohort study Date and time: Friday, March 28, 2025 | 12pm ET US / 9am PT US Featured Author:… -
Research Tool
Common survey items, eMERGE participant survey at 6-12 months post disclosure
This survey covers disclosure of genetic test results to family members, follow up care, behavior changes, and other topics. It can be administered using REDCap. -
Grant Abstract
Optimizing Prenatal Testing Decision-Making
This project will study the role of patient preferences and other factors in choices regarding use of prenatal screening for and diagnosis of chromosomal disorders in a racially/ethnically diverse…- African American
- age at pregnancy
- Amniocentesis
- Asian Americans
- behavioral /social science research tag
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News
ELSI in Review • January 2023
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our January 2023 set explores the ethics of digital twins in… -
News
ELSI in Review • April 2022
About this listing ELSI in Review is a listing of recently published, systematic reviews of the literature on key ELSI topics curated by CERA staff. Our April 2022 set explores carrier screening,… -
Video
ELSIconversations - The Misuse of Genomic Data, Session 2
Full title: What Can Geneticists Do to Address the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…- Genomic Information
- genomic data
- genomic data privacy
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Video
ELSIconversations - The Misuse of Genomic Data, Session 1
Full title: What Can Geneticists Do to Prevent the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…- Genomic Information
- genomic data
- genomic data privacy
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Grant Abstract
Organizing the HGI: Social Impact and Technology Design
This sociological study is a prospective field research project on the development of the human genome initiative during the first half of the 1990's. The study is examining how the genomics…- comprehensive medical planning
- Decision Making
- Ethics
- Genome
- health /scientific organization