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Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer
Matthew Asare1, Charles E Heckler2, Eva Culakova2
1Department of Public Health, Robbins College of Health and Human Sciences, Baylor University, One Bear Place, Waco, TX, 97343, USA. matt_asare@baylor.edu.
Summary
Racial minority participants and cancer patients showed lower understanding of biospecimen use in research. Enhanced informed consent is crucial, especially for minority groups, to ensure comprehension of biospecimen collection and research applications.
Area of Science:
- Biomedical research ethics
- Health disparities
- Patient education
Background:
- Understanding biospecimen collection and use is vital for informed consent in research.
- Previous studies suggest potential disparities in health literacy and research comprehension among diverse populations.
- Ensuring equitable understanding of research participation is a key ethical consideration.
Purpose of the Study:
- To investigate differences in understanding biospecimen collection between non-minority and racial minority participants.
- To compare understanding of biospecimen usage between cancer patients and a healthy comparison group.
- To assess the adequacy of information provided for informed consent in biospecimen donation for research.
Main Methods:
- Cross-sectional analysis of data from female breast cancer patients and a healthy comparison group.
- Evaluation of participants' understanding of biospecimen collection after reading consent forms.
- Linear models used to compare understanding scores between demographic groups, adjusting for confounders like education and reading level.
Main Results:
- Non-minority participants scored higher than racial minority participants on relevance-to-care items (p=0.001).
- Comparison group participants scored higher than cancer patients on relevance-to-care items (p<0.001).
- A significant number of participants across all groups demonstrated poor understanding, with racial minorities consistently scoring lower, even after adjustments.
Conclusions:
- Racial minority participants and cancer patients exhibit lower comprehension regarding biospecimen research.
- Current informed consent processes may not adequately ensure understanding for all participants, particularly minority groups.
- Researchers must prioritize improving comprehension of biospecimen collection and use for all study participants to ensure truly informed consent.
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