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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
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Video
ELSIconversations - The Misuse of Genomic Data, Session 2
Full title: What Can Geneticists Do to Address the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…- Genomic Information
- genomic data
- genomic data privacy
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Video
ELSIconversations - The Misuse of Genomic Data, Session 1
Full title: What Can Geneticists Do to Prevent the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…- Genomic Information
- genomic data
- genomic data privacy
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Video
NHGRI Informational Session on the Renewed ELSI Funding Opportunities
The National Human Genome Research Institute, in collaboration with several other NIH Institutes and Offices, recently renewed the three Notices of Funding Opportunity (NOFOs) used to support…- ELSI research
- Funding
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Video
Polygenic Risk Prediction in Diverse Populations and Contexts: Scientific and Ethical Considerations
This ELSI Friday Forum took place on January 12, 2024. The differential performance of polygenic risk scores (PRS) by population genetic background is a well-known scientific concern and one…- Polygenic risk scores
- Bioethics
- ethical considerations
- genetic diversity
- Screening for polygenic conditions and risk scores
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Video
TraineeHub Grantsmanship Series: The Writing and Uses of Specific Aims
"The Writing and Uses of Specific Aims" took place on July 19, 2023. The Specific Aims section of grant proposals is only one page, but it is one of the hardest to write, with many uses beyond the…- Specific Aims
- Grantsmanship
- Funding Opportunities
- NIH
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Video
TraineeHub: Finding and Making Sense of NIH Funding Opportunities
"Finding and Making Sense of NIH Funding Opportunities" took place on October 3, 2023. Identifying funding opportunities at NIH that match your career and research goals can be overwhelming.…- Funding Opportunities
- NIH
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Video
Affirming Sex and Gender Diversity in Genetics Practices, Policies, and Laws: A Call to Action
This ELSI Friday Forum took place on December 8, 2023. There are already many barriers to appropriate health care for transgender, gender diverse, and intersex (TGDI) communities. The recent surge…- gender diversity
- gender/sexuality
- Biomedical policy
- genetics and law