Community engagement and informed consent in the International HapMap project.
The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
Duke Scholars
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- Parents
- Male
- International Cooperation
- Informed Consent
- Humans
- Human Genome Project
- Genetics, Population
- Genetics & Heredity
- Genetic Variation
- Female
Citation
Published In
DOI
EISSN
ISSN
Publication Date
Volume
Issue
Start / End Page
Related Subject Headings
- Parents
- Male
- International Cooperation
- Informed Consent
- Humans
- Human Genome Project
- Genetics, Population
- Genetics & Heredity
- Genetic Variation
- Female