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Public perspectives on returning genetics and genomics research results
1Institute for Genome Sciences & Policy and Sanford School of Public Policy, Duke University, Durham, NC 27708, USA.
Public Health Genomics
|May 11, 2011
Summary
Participants want their genetic research results, and offering this option may encourage minority community participation. Understanding these preferences is key for ethical study design.
Area of Science:
- Genomic research ethics
- Participant engagement
Background:
- Participant interest in research results is high.
- Policies on returning results may influence study participation.
- African-American attitudes on this issue are understudied.
Purpose of the Study:
- Explore attitudes toward returning genetic research results.
- Assess how policies influence participation in genetic/genomic studies.
Main Methods:
- 10 focus groups conducted in Durham, NC (2008-2009).
- 100 participants (73% female, 76% African-American).
- Focus groups supplemented by anonymous surveys.
Main Results:
- General interest in obtaining genetics research results, especially individual results.
- The option to receive results was valued; its absence was a potential deterrent.
- Participants acknowledged potential complexities in result return.
Conclusions:
- Offering research results can strengthen investigator-participant relationships.
- This option may positively influence minority community participation.
- Engaging diverse publics is crucial for balancing participant and investigator interests.
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