title: Research on stored biological samples: views of African American and White American cancer patients.
abstract: Proposals on consent for research with biological samples should be informed by empirical studies of individuals' views. Studies to date queried mostly white research subjects. The aim of this study was to compare the views of two groups of patients: cancer patients at a university clinic (Winship Cancer Institute at Emory Healthcare) and cancer patients at an inner city county hospital (Grady) who were given the option of tissue banking. Overall, 315/452 (70%) patients completed the survey. The Grady cohort was 86% African American; the Winship cohort was 82% White. The vast majority (95%) of individuals in both cohorts agreed to provide a biological sample for future research. Both cohorts were willing for their samples to be used to study cancer and other diseases, including Alzheimer disease. Few participants preferred to control the disease to be studied (10%) or wished to be contacted again for consent for each future research project (11%). In our sample, almost all clinical patients, regardless of site of care, ethnicity or socioeconomic status, were willing to provide a biological sample for research purposes and allow investigators to determine the research to be done without contacting the patients again. These findings support the recommendation to offer individuals a simplified consent with a one-time binary choice whether to provide biological samples for future research.
authors.affiliation: Winship Cancer Institute, Emory University, Atlanta, Georgia 30322, USA. Rebecca.Pentz@emoryhealthcare.org
authors.forename: Rebecca D
authors.initials: RD
authors.lastname: Pentz
authors.forename: Laurent
authors.initials: L
authors.lastname: Billot
authors.forename: David
authors.initials: D
authors.lastname: Wendler
mesh_terms: D001741:Black or African American / Q000523:psychology / Q000706:statistics & numerical data; D003219:Confidentiality / Q000941:ethics; D032962:Consent Forms / Q000592:standards; D030881:Disclosure / Q000941:ethics; D005260:Female; D005845:Georgia; D006306:Health Surveys; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000175:diagnosis / Q000208:ethnology / Q000628:therapy*; D012107:Research Design; D014015:Tissue Banks / Q000941:ethics / Q000592:standards*; D044465:White People / Q000523:psychology / Q000706:statistics & numerical data