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Event
ELSI Friday Forum |Patients as Partners in Sickle Cell Disease Research in Africa: Ethos, Challenges and Lessons Learned
Join us on Friday, May 10, 2024, for the next ELSI Friday Forum: Patients as Partners in Sickle Cell Disease Research in Africa: Ethos, Challenges and Lessons Learned, with speakers: Ms. Arafa… -
Event
Population Descriptors for Legacy Genomic Data: Challenges and Future Directions
Several National Institutes of Health (NIH) Institutes, Offices, and Centers* are partnering to host a two-day virtual workshop on May 28-29, 2024, to further explore the recommendations from the… -
Funding Opportunity
Research Opportunity Announcement for the Advancing Health Research through Ethical, Multimodal AI Initiative
- health research
- Artificial intelligence
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Event
Genetic Ancestry and Perceptions of Race: Impacts in Social and Medical Contexts
Genetic Ancestry and Perceptions of Race: Impacts in Social and Medical Contexts” that will be held at the University of Pennsylvania on Thurs. May 9. The event is co-sponsored by Penn’s Department… -
In the Media
NEWS 23 February 2024 ‘All of Us’ genetics chart stirs unease over controversial depiction of race
Nature |Debate over figure connecting genes, race and ethnicity reignites concerns among geneticists about how to represent human diversity.- All of Us Research Program
- race and genetics
- Ethnicity
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Research Tool
Hierarchical Mapping Technique
The Hierarchical Mapping Technique, best described in the measures section of the validation included here, enables the collection of information about social network structure using a concentric… -
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… -
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… -
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