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Community engagement and informed consent in the International HapMap project.
Charles Rotimi1, Mark Leppert, Ichiro Matsuda
1National Human Genome Center, Howard University, Washington, DC, USA.
Community Genetics
|June 19, 2007
Summary
The International HapMap Consortium created a human genetic variation resource. Community engagement and informed consent were key, revealing varied but not critical perceptions of the research.
Area of Science:
- Genetics
- Bioethics
- Sociology
Background:
- The International HapMap Consortium developed the HapMap, a comprehensive resource detailing common human genetic variation patterns (haplotypes).
- Ethical considerations and community engagement are crucial in genetic research involving human samples.
Purpose of the Study:
- To describe the development of the HapMap resource.
- To evaluate the processes of community consultation and informed consent in human genetic variation research.
- To understand community perceptions and engagement with genetic research.
Main Methods:
- Implementation of community/public consultation processes in sample collection sites.
- Securing individual informed consent from participants.
- Qualitative assessment of community perceptions and concerns regarding genetic research.
Main Results:
- The HapMap resource, detailing human genetic variation, was successfully developed.
- Community consultation and informed consent processes were implemented, though challenging.
- Perceptions of the research varied among communities, with no critical opposition observed.
Conclusions:
- Openness in genetic variation research fosters better understanding of community views.
- Engaging communities in the scientific process can enhance their participation and trust.
- Addressing individual and group concerns is vital for ethical and successful genetic research.
