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Video
ELSIcon2024: Behind the screens: A case study of misconceptions reflected in social media on the role of health-related consumer genomics services in IGG
ELSIcon2024 • Paper • June 10, 2024 Authors: Speaker: Nathan Reed – Northwestern University When novel applications of science emerge, social media is one of the first places…- ELSIcon2024
- 6th ELSI Congress
- Biobanking and genomic databases
- Genetic testing for non-medical purposes
- Law, regulation, and governance
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Publication
Returning a research participant's genomic results to relatives: Perspectives from managers of two distinct research biobanks
J Law Med EthicsClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): R21HG006594, R01 CA154517, P50 CA102701, R01 CA97075 -
News
ELSIconversations ELSIcon2022 Series
This series included selected recordings from the 2022 ELSI Congress, grouped by topic into four one-hour discussion and networking sessions. The presentation authors briefly recapped their… -
News
ELSIconversations ELSIcon2022 Series
This series included selected recordings from the 2022 ELSI Congress, grouped by topic into four one-hour discussion and networking sessions. The presentation authors briefly recapped their… -
Video
ELSIcon2022 Paper: A Survey on Public Perception toward the Korean National Bio Big Data Project
ELSIcon2022 • Paper • May 27, 2022 Ilhak Lee, Hyun-Young Park, Chai Hee Youl, Jeong Eun Kim, Hannah Kim, Jihyun Yang This survey is aimed at identifying the perception of the general public and…- Motivation to participate in research
- law
- Regulation
- Governance
- Paper
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Additional Resource
Policy Partnerships Project for Genomic Governance (P3G2)
The Policy Partnerships Project for Genomic Governance (P3G2) develops and supports policy, ethical and governance frameworks of biobanks, genomic research databases and other similar health and…- P3G2
- Biobanks
- data cataloguing
- genomic research databases
- social research
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Research Tool
Social Policy Options forBiobank Consent
In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent. They measured respondent comprehension of this…