Abstract B27: Researchers' attitudes about sharing biospecimens or biospecimen data: Findings from a regional survey.
Authors: Oushy Mai H. , Holden Alan E.C. , Vilchis Leticia O. , Ramirez Amelie G. , Gallion Kipling J. , Vilchis Hugo , O'Connell Mary A. 
Published: August 2014

Introduction: The support and efficient management of cancer health disparities research, training, and infrastructure is highly dependent on biobanking of well-annotated biospecimens from different racial/ethnic populations. This pilot study assessed interests, attitudes and barriers of biomedical researchers in NCI Center to Reduce Cancer Health Disparities' regional network G/BMaP Region 4 (AZ, CO, NM, OK, and TX) to sharing biospecimens and participating in a virtual national biorepository.

Methods: Participants were identified and their email addresses obtained from NIH RePORT db. Email invitations for anonymous participation, with embedded informed consent, to participate via a secure state-specific link were sent to 605 individuals (valid email addresses). The survey instrument consisted of 24 questions, comprised of one-choice/multiple-choice questions, Likert scales, and few open-ended responses. Demographic data, professional role, specimen collection types, as well as willingness to share specific types of information through a virtual biorepository were collected. Statistical analysis was performed using SPSS (Chi-square, Factor Analysis and One-Way ANOVA).

Results: The respondents were principal investigators at PhD granting institutions (91.1%) conducting basic (62.3%), translational (43.9%), clinical (8.8%) or epidemiological (5.3%) research; most were non-Hispanic White (63.4%), males (60.6%). While the majority of respondents (67.5%) were aware of The Cancer Genome Atlas (TCGA), only 20.9% of the respondents reported using this biospecimen database in their research.

We found almost no differences regarding attitudes and behavioral intentions with respect to any sociodemographic characteristic of respondents including ethnicity, gender, age or state in which respondents were based with one exception. Male researchers were more likely (54.5%) to collect biospecimens from donors using a general research purpose informed consent, while the majority of female researchers (73.7%) were significantly more likely to collect biospecimens from donors using a specific purpose informed consent (p = 0.048). We did find significant differences in response and attitude based on the type of research conducted by participants. Basic researchers were significantly more likely to share specimen information on a national virtual biorepository, and less likely than participants not engaged in basic research to share grant information. Clinical research participants were less likely to share specimen information than other types of researchers, they were more likely to share grant information.

Conclusions: More than half of respondents would share data about their biospecimens in a virtual national biorespository and would use such a repository to locate biopecimens for their research. There were recurring concerns voiced about legal issues and sample quality. A regional network structure could help reduce these concerns.

This work was supported in part by NM AES and NIH NCI grants 5 U54 CA132383 (O'Connell) and 1 U54 CA153511 (Ramirez).

Citation Format: Mai H. Oushy, Alan E.C. Holden, Leticia O. Vilchis, Amelie G. Ramirez, Kipling J. Gallion, Hugo Vilchis, Mary A. O'Connell. Researchers' attitudes about sharing biospecimens or biospecimen data: Findings from a regional survey. [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 B27.