Abstract
Patients consented to biobanking studies typically do not specify research conducted on their samples and data. Our objective was to gauge cancer biobanking participant preferences on research topics. Patient-participants of a biobanking study at a comprehensive cancer center who had an appointment within the last 5 years, had a valid email address, and with a last known vital status of alive, were emailed a newsletter containing a link to a survey about preferences and priorities for research. The survey assessed demographics and research interest in three domains: cancer site, cancer-related topics, and issues faced by cancer patients. 37,384 participants were contacted through email to participate in the survey. 16,158 participants (43.2%) opened the email, 1,626 (4.3% overall, 10% of those who opened the email) completed the survey, and 1,291 (79.4% of those who completed the survey) selected at least one research priority. Among those who selected at least one research priorities for cancer-relevant topics, the most commonly selected were cancer treatment (66%), clinical trials (54%), and cancer prevention (53%). Similarly, the most selected priorities for cancer-related issues faced by patients were physical side effects of cancer (57%), talking to the oncologist (53%), and emotional challenges due to cancer (47%). Differences by gender were observed, with females reporting more interest in research generally. Cancer patients participating in a biobanking protocol prioritized research on treatments, prevention and side effects, which varied by gender.
Highlights
A key feature to Total Cancer Care (TCC) is that patients agree to be followed for life through registry linkage, give permission to be recontacted if they are found to be eligible for a clinical trial or other research study, and agree explicitly agree that their data and biospecimens will be shared with internal and external investigators
While priority selections did not differ substantially by age, race/ethnicity, or within the catchment area of the cancer center versus not, females tended to be more likely to complete the survey overall and to select more topics as important for research compared to males, biobanking, survivorship issues, and practical challenges faced by cancer patients, such as insurance
Many of the participant-selected research interests were in domains that are traditional strengths of biobanks, such as development of treatments or treatment targets, early detection, and informing clinical trials
Summary
The term biobank was first used in 1996 and since the number of articles mentioning biobanks has increased dramatically, many of which include cancer as the focus [2]. A unique feature of biobanks is that participants consent to broad use of biologic specimens and associated data. In this context, relatively little work has examined the patient perspective and priorities for use of the samples and data in research. Prior studies have examined patient and public preferences in relation to ethical issues in biobanking [6,7,8,9]; few have evaluated what type of research studies biobank participants value
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