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Addressing underrepresentation in genomics research through community engagement
Amy A Lemke1, Edward D Esplin2, Aaron J Goldenberg3
1Professional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Norton Children's Research Institute, affiliated with the University of Louisville School of Medicine, Louisville, KY, USA.
Community engagement in human genetics and genomics research is crucial for minimizing harm and maximizing benefits. This approach helps address health inequities and increase diversity in genomics research.
Area of Science:
- Genetics and Genomics
- Health Equity Research
- Community Engagement Strategies
Background:
- The American Society of Human Genetics (ASHG) envisions widespread benefits from human genetics and genomics.
- Achieving these benefits requires minimizing harms and maximizing advantages.
- This necessitates addressing health inequities and underrepresentation in research.
Purpose of the Study:
- To advance community engagement as a key strategy in human genetics and genomics research.
- To provide guidance on implementing community engagement across the research lifecycle.
- To highlight community engagement's role in achieving equitable research outcomes.
Main Methods:
- Guidance document development.
- Literature review on community engagement in research.
- Expert consultation within the human genetics and genomics field.
Main Results:
- Community engagement is identified as a vital approach for the research lifecycle.
- It offers a pathway to address underrepresentation in genomics research.
- It supports the equitable realization of research benefits.
Conclusions:
- Implementing community engagement is essential for the ASHG vision.
- This strategy is key to addressing health disparities in genetics and genomics.
- Increased representation of diverse communities in research is achievable through engagement.
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