Factors Associated with Enrollment in Cancer Genetics Research

Abstract

Previous studies have identified low patient accrual in largescale cancer clinical trials, particularly for underrepresented groups, such as ethnic minorities, females, and patients >65 years. As there have been few studies examining participation in cancer genetics epidemiologic research, our objective was to identify clinical and demographic factors predicting enrollment in these studies. A total of 1,111 patients diagnosed with colorectal cancer presenting to a gastrointestinal oncology clinic were approached to enroll in a study investigating the role of the MSH6 gene in familial colorectal cancer. Patient consent was sought for providing a blood specimen for DNA analysis and review of medical records/ tumor specimens and contacting family members to confirm the family history of cancer. Seven predictor variables for enrollment (age, sex, ethnicity, family history of colorectal cancer in a first-degree relative, presence of children, insurance type, and type of visit) were analyzed using logistic regression analysis to determine the effect on decision to enroll. Of 1,111 patients approached, 696 (62.6%) enrolled in the study. Of these approached individuals, 4.2% were of nonwhite ethnicity and 33.5% were age z65 years. Patients of white ethnicity [odds ratio (OR), 2.10; P = 0.018], males (OR, 1.47; P = 0.002), those ages V65 years (OR, 1.42; P = 0.009), and those with a first-degree relative with colorectal cancer (OR, 1.57; P = 0.005) were significantly more likely to enroll. Fewer than 4% of all participants denied permission for the study researchers to access information from medical records or to be recontacted by researchers to discuss the enrollment of additional family members. Our data suggest that, once subjects decided to enroll, the majority (88%) was comfortable with consenting to all study components, including the creation of cell lines and future recontact. Low participation rates for ethnic minorities, females, and elderly patients are similar for both cancer genetics and clinical trial studies. (Cancer Epidemiol Biomarkers Prev 2006;15(7):1355 -9)

Hypothetical and factual willingness to participate in biobank research

“…21 In a study on colorectal cancer patients in 2001-2004, 63% donated samples to genetic research. 24 In 2003-2004, samples collected from NHANES respondents were no longer used for genetic research or stored for future research; under these conditions, 71% of eligible Americans (98% of respondents) donated samples. 22 Of the resulting ten comparisons, five indicate that actual participation was higher than predicted, two suggest the converse relationship, and three show no difference.…”

“…Several published biobank studies carried out in the United Kingdom, 18,19 United States, [20][21][22][23][24] Iceland, 25 and Singapore 26,27 had data on factual participation rates. In Sweden, we obtained participation data from a biobank maintained by the department of Endocrine Oncology, Uppsala University Hospital.…”

Awareness and interest in biospecimen donation for cancer research: views from gatekeepers and prospective participants in the Latino community

“…Interview and focus group data contributed to understanding the technical accommodations required of the cancer center to promote and conduct research that includes the collection of biospecimens from diverse communities, specifically the Latino community. Ethical considerations regarding the collection of biospecimens for research are not uncommon in the literature (Beskow and Dean 2008;Haga and Beskow 2008;Tutton 2009), especially in consideration of genetic research as it relates to epidemiologic studies and public health research more broadly (Brand and Probst-Hensch 2007;Ford et al 2006;Goldman et al 2008;Katz et al 2008;Meslin and Garba 2011). Participants in this study linked their altruistic intentions for participating in research as a way of helping others in the future, especially their family members who may become ill in the future.…”

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

“…As of June 2009, 92 % of participants in genome wide association studies were of White ethnicity (Haga 2010). Patients from ethnic minorities have been found to be significantly less likely to enroll in cancer genetics epidemiological research than patients of White ethnicity (Ford et al 2006). This under-representation is important for many social, ethical and pragmatic reasons.…”