Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens
Abstract
:1. Introduction
1.1. Center for the Ethics of Indigenous Genomic Research
1.2. Preliminary Item Development
1.3. Cognitive Interviewing
2. Materials and Methods
2.1. Participants, Setting and Procedures
2.2. Training
2.3. Ethics Review
2.4. Recruitment
2.5. Data Collection/Cognitive Interviewing Process
2.6. Analysis
- Site-based researchers reviewed the notes entered in Microsoft Excel from each cognitive interview.
- Each instruction, item, and/or scale was assessed to determine if it was working as intended.
- Problems with each instruction, item and/or scale were reviewed to determine if they were cross-site or site-specific issues
- Revision suggestions for each issue were determined.
- A presentation of CI results was made to each site, reviewing site-specific issues and discussing draft revisions.
- A presentation of CI results was made to the CEIGR expert panel, reviewing cross-site issues and responses previously discussed in step five.
- Site leads and CEIGR leadership decided on revised items to be used in the survey that would be fielded at their local site. Items that were selected at all three sites were considered as the 52-item CEIGR cross-site survey.
3. Results
3.1. Participant Response to Cognitive Interviewing
3.2. Science and Society
3.3. Direct-to-Consumer Ancestry Testing
3.4. Culture and Spirituality
3.5. Items of Importance When Deciding to Participate in Research
3.6. Specific Harms from Research Findings
3.7. Reconsent
3.8. Research Oversite Committee
3.9. Research Participant Involvement in the Research Process
3.10. Facets of Research That Are Important for Participants to Know
3.11. Concerns on Sharing Information
3.12. Privacy
3.13. Traits
3.14. Potential Benefits of Genetic Testing
3.15. Potential Risks of Genetic Testing
3.16. Balancing Risks and Benefits of Genetic Testing
3.17. Genetic Testing at the Tribal Primary Care Clinic
3.18. Community Benefits and Harms of Research
3.19. Research Regulations
3.20. Individual Data Ownership
3.21. Demographics
3.22. Comments on Cognitive Interviewing
3.23. Final Instrument
4. Discussion
Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Initial Item and Response | Example Participant Response | Reason for Modification | Updated Item |
---|---|---|---|
Item: It would be interesting to know the risk of passing a predisposition to a disease onto your children. * | “Predisposition, what does that mean?” | Multiple participants not understanding key term within item | I would pay for genetic testing to know the risk of passing a disease onto my children. |
Item: Have you shared biological samples in a research study? * | “Biological you mean like human blood, tissue body fluids?” | Multiple participants uncertain about what “biological sample” term is includes | “Have you shared biological (blood, urine, saliva) samples in a research study?” |
Item: Anonymizing genetic material in a biobank may not protect the donor from spiritual harm. * | “Did I put 4? What does this mean? I couldn’t understand the question that’s why I put 4. What does anonymizing mean to you?” | Multiple neutral item responses when participants did not understand a term in the item. Multiple issues with terms “anonymizing”, “genetic material”, “donor”, “spiritual harm”. | Remove item |
Item: The area I live in is Responses: Rural, suburban, urban | “Am I urban or suburban?” | Confusion as to delineating response categories provided | Remove item |
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Hiratsuka, V.Y.; Beans, J.A.; Byars, C.; Yracheta, J.; Spicer, P.G. Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens. Int. J. Environ. Res. Public Health 2024, 21, 1144. https://doi.org/10.3390/ijerph21091144
Hiratsuka VY, Beans JA, Byars C, Yracheta J, Spicer PG. Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens. International Journal of Environmental Research and Public Health. 2024; 21(9):1144. https://doi.org/10.3390/ijerph21091144
Chicago/Turabian StyleHiratsuka, Vanessa Y., Julie A. Beans, Christie Byars, Joseph Yracheta, and Paul G. Spicer. 2024. "Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens" International Journal of Environmental Research and Public Health 21, no. 9: 1144. https://doi.org/10.3390/ijerph21091144