Considerations for bio-specimen collection among black women residing in the rural Deep South participating in a cancer
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CASE REPORT
Considerations for bio-specimen collection among black women residing in the rural Deep South participating in a cancer prevention study Tiffany L. Carson & Claudia M. Hardy & Eva Greene & Pamela L. Carter & Glenda James & Edward E. Partridge & Monica L. Baskin
Received: 29 August 2013 / Accepted: 28 November 2013 / Published online: 15 December 2013 # Springer-Verlag Berlin Heidelberg 2013
Introduction Cancer is a leading cause of mortality and morbidity in the USA (Hoyert et al. 2012). Additionally, cancer health disparities (incidence, morbidity, mortality) exist in the USA despite notable progress in diagnosis and treatment (Ward et al. 2004). T. L. Carson : M. L. Baskin Division of Preventive Medicine, Department of Medicine, School of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA M. L. Baskin e-mail: [email protected] T. L. Carson : C. M. Hardy : E. Greene : P. L. Carter : G. James : E. E. Partridge : M. L. Baskin University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL, USA C. M. Hardy e-mail: [email protected] E. Greene e-mail: [email protected] P. L. Carter e-mail: [email protected] G. James e-mail: [email protected] E. E. Partridge e-mail: [email protected] E. E. Partridge Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, School of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA T. L. Carson (*) 1720 2nd Avenue South MT 639, Birmingham, AL, USA e-mail: [email protected]
Racial/ethnic minorities, low socioeconomically disadvantaged populations, and persons living in rural areas experience the greatest cancer burden (Jemal et al. 2008). Bio-specimen collection is vital for the advancement of enhanced diagnostic, prevention, and treatment tools for cancer and other diseases. Bio-specimens, materials taken from the human body, provide valuable information about how to (1) identify and validate ways to deliver drugs or agents to specific cells, (2) identify how diseases progress and vary, (3) group patients, based on their genetic characteristics or biomarkers of their disease, to determine which treatment is most appropriate, and (4) develop screening tests to detect biomarkers that are associated with certain stages or subtypes of a disease (National Cancer Institute 2013b). Given the potential impact of personalized medicine to improve disease outcomes and eliminate health disparities, research on biospecimens from samples of diverse populations of patients and healthy controls are critical. However, historically, racial/ethnic minorities are poorly represented in biospecimen, bio-banking, and cancer research (Scott et al. 2010; Murthy et al. 2004; Rodriguez et al. 2013). The 2010 American Society of Clinical Oncology (ASCO) Statement on Attributes of Exemplary Research Sites, a series designed to help clinical research sites exceed Good Clinical Practice guidelines, highlights the following as important considerations for engaging individuals in bio-specimen research: talking with patients, in
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