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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,… -
Collection
Ethical and Legal Challenges Posed by the Implementation of AI Applications in the Healthcare Setting
Healthcare institutions are implementing artificial intelligence (AI) at a rapid pace. The hope is that AI will improve the quality of care and reduce costs in the long run. However, the deployment…- Artificial intelligence
- Healthcare
- health disparities
- Regulation
- FDA
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News
Value Ethics: Mapping Strategies for Value Assessment and Reimbursement of Targeted Genomic Therapies for Rare Diseases – A New CERA Working Group
CERA Working Groups are interdisciplinary teams that aim to deepen our understanding of emerging, high priority, or understudied ELSI issues using innovative approaches. CERA selects one or two…- genetic therapy
- cost of gene therapies
- working group
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Collection
Neurobehavioral Genetic Testing in Children: How Much Should We Know?
Recent advances in genetics have yielded important insights into the etiology of autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs). Professional societies such as the…- Genetic Testing
- Testing children
- autism spectrum disorder
- autism
- pediatric