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Protecting groups from genetic research.
1University of Wisconsin-Madison, Wisconsin 53706, USA. dhausman@wisc.edu
Bioethics
|February 9, 2008
Summary
Genetics research poses risks to participant groups. This study examines protections, categorizing harms and arguing community engagement is not always appropriate, and can even be detrimental.
Area of Science:
- Genetics
- Bioethics
- Social Sciences
Background:
- Genetics research, similar to studies in sociology and anthropology, can pose risks to the communities from which research participants are drawn.
- Ethical considerations in genetics research necessitate a careful examination of potential harms to groups, not just individuals.
Purpose of the Study:
- To analyze the types of protection required for groups affected by genetics research.
- To determine who should be responsible for providing these protections.
- To evaluate the appropriateness and potential risks of community engagement in genetics research.
Main Methods:
- Categorization of potential harms into process-related and outcome-related categories.
- Distinction between two types of group harms.
- Analysis of the justification for and potential negative consequences of community engagement.
Main Results:
- Identified distinct categories of harms stemming from genetics research.
- Differentiated between process-related and outcome-related harms, as well as two types of group harms.
- Found that community engagement is not universally applicable or beneficial for mitigating all identified harms.
Conclusions:
- Community engagement is a justified protective measure for specific types of harms in genetics research.
- Caution is advised as community engagement strategies themselves may introduce new risks or harms.
- A nuanced approach is needed to determine when and how community engagement should be implemented in genetics research.
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