BackgroundCancer health disparities research depends on access to biospecimens from diverse racial/ethnic populations. This multimethodological study, using mixed methods for quantitative and qualitative analysis of survey results, assessed barriers, concerns, and practices for sharing biospecimens/data among researchers working with biospecimens from minority populations in a 5 state region of the United States (Arizona, Colorado, New Mexico, Oklahoma, and Texas). The ultimate goals of this research were to understand data sharing barriers among biomedical researchers; guide strategies to increase participation in biospecimen research; and strengthen collaborative opportunities among researchers.Methods and PopulationEmail invitations to anonymous participants (n = 605 individuals identified by the NIH RePORT database), resulted in 112 responses. The survey assessed demographics, specimen collection data, and attitudes about virtual biorepositories. Respondents were primarily principal investigators at PhD granting institutions (91.1%) conducting basic (62.3%) research; most were non-Hispanic White (63.4%) and men (60.6%). The low response rate limited the statistical power of the analyses, further the number of respondents for each survey question was variable.ResultsFindings from this study identified barriers to biospecimen research, including lack of access to sufficient biospecimens, and limited availability of diverse tissue samples. Many of these barriers can be attributed to poor annotation of biospecimens, and researchers’ unwillingness to share existing collections. Addressing these barriers to accessing biospecimens is essential to combating cancer in general and cancer health disparities in particular. This study confirmed researchers’ willingness to participate in a virtual biorepository (n = 50 respondents agreed). However, researchers in this region listed clear specifications for establishing and using such a biorepository: specifications related to standardized procedures, funding, and protections of human subjects and intellectual property. The results help guide strategies to increase data sharing behaviors and to increase participation of researchers with multiethnic biospecimen collections in collaborative research endeavorsConclusionsData sharing by researchers is essential to leveraging knowledge and resources needed for the advancement of research on cancer health disparities. Although U.S. funding entities have guidelines for data and resource sharing, future efforts should address researcher preferences in order to promote collaboration to address cancer health disparities.
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.
Introduction/Background: The MinorityBiospecimen/Biobanking-Geographic Management Program (BMaP) is supported by the CRCHD of the NCI, to create state-of-the-art networks/centers dedicated to ensuring the adequate and continuous supply of high-quality human biospecimens from multi-ethnic communities for cancer research. A regional hub infrastructure was established with specific cores: administration, training, bioinformatics, biospecimen/biobanking, community translation, emerging technologies, and ethical-legal-policy issues. Two survey tools were employed to identify regional resources, including biospecimen collection and sharing practices: the NCI-developed Readiness Assessment Tool (RAT) and a regional-specific online Comprehensive Needs Assessment (CNA). These tools demonstrated the absence of central institutional biospecimen records at our partner institutions. This observation prompted a qualitativepilot study to assess the attitudes and barriers of researchers in the region to sharing biospecimens and participating in a virtual national biorepository. Methods: An online survey tool was developed to assess general receptiveness toward biobanks, presumed usefulness of biobanks, and perceived attitudes and barriers in recruiting patients for biobanks. We identified investigators working directly and indirectly, or planning to work with human biospecimens at Region 4 institutions (AZ, CO, NM, OK, TX). Participants’ email addresses were obtained from a publically available NIH-funded database (NIH RePorter), and an email inviting them to participate was sent along with the secure link to access the survey online. Participants were followed up with reminder emails at 2 and 4 weeks to complete the survey. Results: The RAT and the CNA identified several challenges regarding biospecimen collections: few of the Region 4 participants utilize biospecimens routinely in their research; there are no central institutional biospecimen records, so resource listings are all ad hoc; lack of desire and trust by some ethnic groups to contribute to biospecimen research; biospecimens collection between institutions may have problems due to lack of trust between target populations; and certain collaborating institutions and some repositories fail to cooperate due to competition, territorial issues, and lack of communication. Results from the pilot study will help generate recommendations and hypotheses regarding biospecmien sharing and participation in a virtual national biorepository among the 485 Region 4 researchers. Identifying the barriers to sharing biospecimens and participating in a national virtual biorepository will in turn result in strengthening collaborative opportunities among researchers in the region through the sharing of biospecimen data collections. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 103rd Annual Meeting of the American Association for Cancer Research; 2012 Mar 31-Apr 4; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2012;72(8 Suppl):Abstract nr 5520. doi:1538-7445.AM2012-5520
Background: Efforts to identify biological and genetic factors contributing to cancer health disparities have increased the need to access biospecimens from diverse populations. One challenge is the limited number of specimens from diverse populations within existing biobanks. Members of certain racial/ethnic minority groups may be less aware of or less willing to participate in biospecimen donation opportunities. Second, although there are already a large number of established biorepositories nationwide, it remains a challenge for researchers to allocate sufficient, well-annotated tumor tissues to these repositories. As such it is important to determine the perceived barriers and attitudes to sharing data and biospecimens among researchers; and in turn inform programs on ways to increase sharing of limited biospecimens collected from diverse populations. This qualitative study assessed data sharing practices, barriers and concerns of researchers in a 5-state region (AZ, CO, NM, OK and TX). Little is known about the data sharing perceptions of researchers in this region, which is multi-cultural and multi ethnic. Methods: The present qualitative analysis was part of a larger study that assessed researchers’ willingness to participate in a virtual national biorepository. NIH RePORT db was used to identify 605 individuals engaging in research involving biospecimens. Email invitations to complete an online survey were sent with an embedded informed consent, via a secure state-specific link; 119 participants responded. Open-ended questions captured the respondents’ perceived barriers to implementation of a national biorepository; common reasons for refusal of individuals to donate specimens; requirements for collaborating and sharing data; and their concerns if unwilling to share biospecimens/data. A thematic analysis was conducted on these responses using two independent coders. Participants reported a variety of common themes on each of the questions. Results: Most respondents were principal investigators at PhD granting institutions (91.1%), conducting basic (62.3%), translational (43.9%), clinical (8.8%), and epidemiological (5.3%) research. Most were non-Hispanic White (63.4%), males (60.6%). Respondents provided 255 detailed statements. Legal and ethical concerns and requirements for biospecimen sharing were a persistent theme. Methodological concerns were also raised including sample quality, sample size and study design. Sharing biospecimens beyond the home institution was also raised as a barrier to data sharing in a number of contexts. Impact: Determining the perceived barriers and attitudinal factors to sharing data will help generate recommendations to increase researchers’ participation in the scientific data sharing process involving high-quality, multi-ethnic human biospecimens. This will ultimately reduce cancer health disparities. Citation Format: Mai H. Oushy, Rebecca Palacios, Mary A. O'connell. Barriers to sharing biospecimens or biospecimen data among researchers: qualitative findings from a regional survey. [abstract]. In: Proceedings of the 104th Annual Meeting of the American Association for Cancer Research; 2013 Apr 6-10; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2013;73(8 Suppl):Abstract nr 1370. doi:10.1158/1538-7445.AM2013-1370
Background/Objectives: NCI CRCHD Region 4 BMaP (Arizona, Colorado, Oklahoma, New Mexico and Texas) was initiated in 2009. The overall goal is achieving measureable reductions in racial cancer health disparities through developing regional networks where resources can be pooled to facilitate team science approaches to cancer health disparity reduction. Methods: We established a regional hub infrastructure with specific cores: administration, training, bioinformatics, biospecimen/biobanking, clinical trials, community translation, emerging technologies, and ethical-legal-policy issues. Three methods, a group meeting and two survey tools were employed to identify regional resources. The NCI-developed Readiness Assessment Tool (RAT) collected data on cores; the “Face-to-Face” gathering provided for a SWOT analysis in cancer health disparities among Region 4 stakeholders. The online Comprehensive Needs Assessment (CNA) survey identified institutional-level characteristics necessary to develop a regional implementation plan. Results: 100% complete response for RAT and CNA surveys. Few reported significant needs although many reported significant institutional deficiencies in bioinformatics, biospecimen/biobanking, clinical trials, and emerging technologies. Primary diseases of interest include breast and colorectal cancers. In Region 4, few CRCHD funded investigators collected biospecimens in their research programs; and all members reported strong training programs. The Face-to-Face meeting strengthened existing partnerships and increased collaboration while providing attendees a regional overview of strengths, weaknesses, opportunities, and threats. Implications/Next Steps: Regional networks of health disparities researchers are already leverging resources to reduce cancer health disparities among minorities in the region. The GMaP/BmaP network provided contacts to leverage CHEs in the region. The program is investigating methods to create a region-wide virtual biorepository, with descriptions of biospecimens collected in research program by Region 4 PIs. Such a virtual biorepository database would be linked with other regioanl BMaP databases that are developed. In addition, Region 4 implementation plan includes creating bioethics training tools for biomedical research on US minority populations. Training materials to be developed would address missing bioethical topics on health disparities issues with an emphasis on Native Americans and Hispanic Populations, and within the topics of biospecimen collection and clinical trial participation. This aims at creating career opportunities in bioethics for students and junior investigators at minority serving institutions. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A2.
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