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News
ELSI in Review • July 2022
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 July 2022 set explores regulations for direct-to-consumer… -
News
Solicitation of Nominations for the 2022 NHGRI’s Outstanding Award for Enhancing Diversity, Equity, Inclusion, and Accessibility in the Genomics Workforce
View Notice online Notice Number: NOT-HG-22-014, Release Date: June 7, 2022 Purpose The National Human Genome Research Institute (NHGRI) solicits nominations for its first annual Outstanding…- Applications Grants
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News
Using a Family Advisory Council to Understand the Informational Needs of Prospective Gene Therapy Trial Participants: An Interview with the Co-PIs of the SCDGENE CERA Working Group
Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90…- sickle cell disease
- gene therapy
- Sickle Cell
- gene therapies
- community based participatory research
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News
ELSI in Review • June 2022
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 June 2022 set explores distributed ledger technology in… -
News
CERA Statement Against the Weaponization of Genetic Research
The shooting in Buffalo that resulted in the deaths of ten Black Americans is one of many in a series of tragedies that have resulted from systemic racism. We condemn white supremacy and the misuse…- racism
- Behavioral Genetics
- Eugenics
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News
All of Us Research Program Seeks Input on Environmental Health Data
The National Institutes of Health’s All of Us Research Program has issued a Request for Information (RFI) to gather public suggestions on integrating environmental health data…- All of Us Research Program
- Environmental Health
- request for information
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News
SNAPSHOTs: Expanding ELSI Education
Announcing the Personal Genetics Education Project (pgEd) / CERA Partnership For over a decade, Marnie Gelbart, Ph.D., Director of Programs at the Personal Genetics Education Project (pgEd) in the… -
News
ELSI in Review • May 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 May 2022 set explores person-centered… -
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,… -
Grant Abstract
A Sociotechnical Approach to Improving Security and Privacy in the Genomic Data Ecosystem
PROJECT SUMMARY/ABSTRACT The dream of open science for genomics is hindered by concerns about genomic data re-identification and the resulting restrictive data access protocols. The long-term goal is…- Adopted
- Adoption
- Algorithms
- Attitude
- Belief