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News
ELSI Research Methods Spotlight: Social Network Analysis
Laura M. Koehly, Ph.D., Chief & Senior Investigator at the Social and Behavioral Research Branch (SBRB) of the National Human Genome Research Institute (NHGRI), develops and applies social… -
Research Tool
Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, and Uplift Scales
The Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, Uplift Scales are used to examine whether levels of nonfeasance, malfeasance, and uplift are associated with the… -
News
ELSI in Review • March 2024
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 March 2024 set explores liability in applications of… -
In the Media
‘All of Us’ reports half of the genomes it has sequenced are from non-Europeans
STAT News |Six years ago, the National Institutes of Health placed its biggest ever bet on precision medicine, launching a study to enroll over 1 million participants in an ambitious data-gathering…- All of Us Research Program
- Pangenome
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Research Tool
The Parental Personal Utility Scale (Parent PrU)
The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful). This… -
News
ELSI in Review • February 2024
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 February 2024 set explores ethical considerations for… -
In the Media
23andMe Breach Targeted Jewish and Chinese Customers, Lawsuit Says
The New York Times |The class-action suit said the genetic testing company failed to notify customers whose personal information was compiled into “curated” lists that were sold on the dark web.- 23andMe
- genetic data
- Biobanking and genomic databases
- breaches of confidentiality
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News
ELSI in Review • January 2024
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 2024 set explores experiences with genetic… -
Research Tool
Race Attributes in Clinical Evaluation (RACE) Scale
Bonham and colleagues developed the Racial Attributes in Clinical Evaluation (RACE) scale to assess the degree to which health professionals employ race in their clinical decision making. The scale… -
News
ELSI in Review • December 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 December 2023 set explores public perceptions of AI in…