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Published on: November 30, 2022
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Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process
Bettina F Drake1,2, Katherine M Brown3, Sarah Gehlert3,4
1Division of Public Health Sciences, Washington University in St. Louis School of Medicine, St. Louis, MO, 63110, USA. drakeb@wudosis.wustl.edu.
Summary
Supplemental brochures improved understanding of cancer biobank donation processes for women. Cognitive testing ensured clear communication for informed consent, aiding decision-making for biospecimen use.
Area of Science:
- Biobanking
- Informed Consent
- Health Communication
Background:
- The US Department of Health and Human Services aims to improve informed consent clarity.
- Prior research indicates participants may not fully comprehend research studies post-consent.
- Effective communication is crucial for participant understanding in research.
Purpose of the Study:
- To develop and test plain language brochures supplementing cancer biobank informed consent forms.
- To assess participant understanding of different consent models for biospecimen use.
- To improve decision-making for participation in cancer biobanks.
Main Methods:
- Developed supplemental brochures with plain language information on donation processes.
- Conducted cognitive testing through qualitative, semi-structured interviews with 14 women.
- Gathered feedback on brochure understandability, design, and cultural appropriateness.
Main Results:
- Cognitive testing revealed insights into participant perceptions of the brochures.
- The developed brochures effectively communicated information on notice, broad, and study-specific consent models.
- Feedback guided the tailoring of brochures for clarity and cultural relevance.
Conclusions:
- Supplemental brochures can enhance comprehension of cancer biobank donation processes.
- Cognitive testing methods are effective for tailoring consent materials.
- Improved communication aids diverse populations in making informed decisions about biospecimen donation.
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