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News
The Forefront of Genomics: ELSI and NHGRI’s 2030 Strategic Vision
After two years of planning, the NHGRI released its 2030 “Strategic vision for improving human health at The Forefront of Genomics.” published in Nature on October 28, 2020. Acknowledging the…- National Human Genome Research Institute
- NHGRI 2030 Strategic Vision
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Video
5. The NIH Biosketch
Updated on 11/6/2020 This video is focused on helping you prepare a stellar NIH biosketch for your ELSI grant application. -
Video
To Catch a Killer: Law Enforcement Uses of DNA Databases
Overview In 2018, law enforcement identified a suspect in the Golden State Killer case by matching the genomic profile of DNA left at crime scenes to those held in public databases and by using… -
Video
Ethical Frameworks for Research Collaboration with Indigenous Communities
Research with Alaska Native and American Indian people has a complex history. American Indian and Alaska Native peoples, are both a racial classification and less known to most Americans, a political… -
Video
Engaging Participants as Partners: ELSI Considerations in Large-Scale Precision Medicine Research
To be relevant and impactful, it has become increasingly necessary for researchers to engage stakeholders outside the usual research communities, such as patients and community representatives. Yet,… -
Video
CRISPR and Human Identity: Governing Germline Gene Editing
International uproar followed the announcement in late 2018 of the birth of twin girls whose genomes had been edited with CRISPR genome editing technology. Critics pointed not only to the health…- CRISPR
- Personal Identity
- Gene Editing
- Governance of emerging genomic technologies
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Video
4. The Research Plan
Updated on 11/6/2020 This video is focused on helping you to write a strong research strategy, also called a research plan, for your ELSI grant application. -
News
Will the benefits of genomics research reach “All of Us”?
One approach to identifying new potential drug targets, Dr. Keolu Fox, a human geneticist in the Indigenous Futures Lab at the University of California, San Diego claims, is adding genetic… -
News
All of Us Research Program Releases Tribal Consultation Final Report
NIH to enhance tribal engagement efforts for precision medicine research: Tribal leaders inform All of Us Research Program’s next steps to include tribal communities PRESS RELEASE…- Tribal Sovereignty
- indigenous community
- Data Governance
- Alaska Native/American Indian Health Research
- Best practices for clinical and research ethics consultation
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News
Novel Gene Therapies for Pediatric and Young Adults with Sickle Cell Disease: Engaging Patient and Parent Stakeholders Working Group
Sickle Cell Disease (SCD) is an inherited disorder that results in premature mortality and severe morbidity in millions of afflicted individuals worldwide. Novel therapies are urgently needed and…- working group
- gene therapy
- Sickle Cell
- Stakeholder Engagement
- Spotlight