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Grant Abstract
Data Release Policies for Genomics: Legal and Ethical Issues
A significant number of NIH-funded projects are under the jurisdiction of an explicit data release policy. Such projects include: any project with direct costs of more than $500,00 per year, any…- Communities
- confidentiality
- Confusion
- Consent
- Data
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Grant Abstract
SouthCentral Research Foundation NARCH
In the Southcentral Foundation Research Center for Alaska Native Health (RCANH), SCF will position itself to achieve the chief purpose of NARCH - "to reduce health disparities, enhance… -
Publication
Money and murder: The dark side of the Asilomar meeting on recombinant DNA
Natureby Matthew Cobb -
Video
Genomics and Data Sovereignty: Policy and Deliberative Approaches for Engaging Indigenous Communities
ELSI Friday Forum • May 14, 2021 Nanibaa’ Garrison, PhD, moderates the session with panelists Stephanie Russo Carroll, DrPH, MPH, and Justin Lund, MA, discussing Indigenous data sovereignty and…- Indigenous Communities
- Alaska Native/American Indian Health Research
- genomic data sharing policy
- data sovereignty
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Grant Abstract
Human Subjects Protections in Prenatal Gene Transfer Research
This project explores whether the current regulations for protecting research subjects will provide adequate protections and guidance for future research involving human prenatal gene therapy. It…- Awareness
- base
- Benefits and Risks
- Child
- design
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Video
Population Descriptors in Genomic Research: Applying the NASEM Recommendations
This ELSI Friday Forum took place on July 14, 2023. History demonstrates that the potential for typological thinking continues to be a hazard of genetic research involving human groups. In 2022 the…- population descriptors
- NASEM
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Grant Abstract
Engaging Tribal Participation in Research through Priority Setting and Regulation
The recruitment of American Indians and Alaska Natives (AI/AN) to participate in research is complicated by a long and troubled history between researchers and Native populations of the United States…- Alaska
- Alcohols
- American Indian and Alaska Native
- American Indians
- Area
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Grant Abstract
Challenges of Informed Consent in Return of Data from Genomic Research
Genomic data, including findings incidental to the purpose for which a study is undertaken, can contain information of use and importance to research subjects related to their health, lifestyle, and…- Access to Information
- Address
- Adverse effects
- adverse outcome
- Alzheimer's Disease