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Research Tool
Clinical Broad Data Sharing Consent Video, Clinical Genome Resource (ClinGen)
The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form. It include testimonials on the importance of data sharing as well as information on the… -
Research Tool
Consent to Share Genetic and Health Information, Clinical Genome Resource (ClinGen)
This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting. The language use on the form is consistent with the NIH Genomic Data Sharing… -
Video
Balancing Data Privacy and Data Sharing: Normative and Technical Approaches
ELSI Friday Forum • April 8, 2022 To maximize benefits for patients, broad access to comprehensive genomic datasets is necessary. However, data sharing is in tension with privacy obligations to…- data privacy
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Video
ELSIcon2022 Paper: Sharing Qualitative Research Data: Addressing the Ethical and Logistical Challenges
ELSIcon2022 • Paper • June 1, 2022 James DuBois, Jessica Mozersky Qualitative data sharing (QDS) promises several benefits: enabling secondary analyses to extend project findings at low cost…- Live
- Paper
- Reflections on the ELSI field
- Methodology and study design
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News
ELSI in Review • September 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 September 2023 set explores ethical challenges associated… -
Grant Abstract
Data Release Policies for Genomics: Legal and Ethical Issues
A significant number of NIH-funded projects are under the jurisdiction of an explicit data release policy. Such projects include: any project with direct costs of more than $500,00 per year, any…- Communities
- confidentiality
- Confusion
- Consent
- Data
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Additional Resource
NIH Sharing Policies and Related Guidance on NIH-Funded Research Resources
This resource includes links to policies, repositories, and guidance for the sharing of results and accomplishments of the activities funded by the National Institutes of Health (NIH) with the…- NIH
- NIH policy
- data sharing
- genomic data
- data resources
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News
NIH Requests Information on Developing Consent Language for Future Use of Data and Biospecimens
On July 1, 2021 the National Institutes of Health (NIH) announced a Request for Information (RFI) on the utility and useability of Consent for Data and Biospecimen Sharing for Future…- Consent
- data and biospecimens consent
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Video
ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing
ELSIcon2022 • Paper • June 3, 2022 Mary Majumder, Christi Guerrini, Amy McGuire, Jill Robinson, Matthew Blank, Robert Cook Deegan, Juli Bollinger, Janis Gear It is now widely acknowledged…- Live
- Paper
- Data and data stewardship
- equity and justice in genetics