Abstract A30: Informed consent for cancer biobank research: Case series of patients with cancer disparities in rural Maine.
2012
One critical issue in cancer research biobanking is improving representation of America's minority and medically underserved populations. Rural populations often suffer disparities related to poverty and healthcare access, limiting their participation in cancer research. We report a case series of newly diagnosed cancer patients at Eastern Maine Medical Center (EMMC), a rural comprehensive medical center. Of 85 eligible cases, 83 (98%) consented to participate in biobanking research; 2 years later, survivors (87%) consented to 2 additional requests.
We used NCI/ISBER Best Practices to create biobank infrastructure after approval by EMMC IRB and OHP HRPO. Informed consent forms were at Flesch-Kincaid 8th Grade reading level, and supplemented by NCI educational brochures. Cases lived 50-150 miles from EMMC. Of 108 candidates, 83 eligible cases (49 lung cancer; 21 breast cancer; 13 other cancers) consented to questionnaires and donation of blood and/or tissue. Of the remaining 23 cases, 2 declined; cancer was not confirmed in 12; 4 died, and 7 were ineligible. Within 2 years, 14 cases died. Of those alive, 60/69 (87%) were re-contacted and consented to additional data collection, and transfer of biospecimens to NCI's biorepository. Most cases exhibited co-morbidities with 1-3 chronic diseases (mostly cardiovascular), prior cancer history and long-term tobacco and/or alcohol consumption. Nearly 90% reported 1+ relative with cancer, while 69%, reported 1+ prior cancers. Anecdotally, willingness to consent was based on altruistic hopes that research would generate knowledge to reduce cancer incidence. In summary, cancer patients from disadvantaged rural communities will consent to participate in biobank research.
Citation Format: Janet M. Hock, Deborah G. Morrison, Christopher C. Farah. Informed consent for cancer biobank research: Case series of patients with cancer disparities in rural Maine. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr A30.
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