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Capacities of Global Institutions for Gene Drive Governance
Gene drive technologies represent a promising approach to the reduction of the global health burden posed by insect-borne infectious diseases like malaria and dengue. The application of new…- Gene Drive Technology
- Global Governance
- regulatory
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News
Ethical, Legal, and Social Implications in All of Us
(The following announcement is available online at All of Us, News and Events) Today the All of Us Research Program released the white paper “Ethical, Legal, and Social Implications (…- All of Us Research Program
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News
The Sulston Project: Making the Knowledge Commons for Interpreting Inherited Cancer Risk More Effective
The Sulston Project is a joint research effort at Arizona State University and Baylor College of Medicine named after John Sulston, the champion of open science who, with Bob Waterston, crafted the…- Genetic Data Sharing and Management
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News
Corporate wellness programs, a threat to privacy?
Genetic testing is increasingly offered as a benefit in employer-sponsored health and wellness programs. Despite rapidly growing popularity of wellness programs, there is little evidence to support…- Genetic Testing
- Wellness programs
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News
Albert R. Jonsen, PhD (1931-2020) Foundational Scholar of Bioethics
Albert R. Jonsen, PhD (1931-2020), a foundational figure and scholar in bioethics, died at his home in San Francisco on October 21, 2020. His extraordinary contributions to the field of…- Al Jonsen
- Bioethics History
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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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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
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News
Developing Resources for DNA Testing at the Border: BorderDNA Working Group
Emerging technological advances and political shifts have expanded immigration-related DNA applications beyond relationship tests within a family for visa petitions. Several U.S. government programs…- genetic testing
- Immigration
- Data Collection