title: To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region.
abstract: BACKGROUND
  Cancer 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
  Email 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.
  
  
  RESULTS
  Findings 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 endeavors.
  
  
  CONCLUSIONS
  Data 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.
authors.affiliation: Plant and Environmental Sciences, New Mexico State University, Las Cruces, New Mexico, United States of America.
authors.forename: Mai H
authors.initials: MH
authors.lastname: Oushy
authors.affiliation: Public Health Sciences, New Mexico State University, Las Cruces, New Mexico, United States of America.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Palacios
authors.affiliation: Institute for Health Promotion Research, University of Texas Health Science Center, San Antonio, Texas, United States of America.
authors.forename: Alan E C
authors.initials: AE
authors.lastname: Holden
authors.affiliation: Institute for Health Promotion Research, University of Texas Health Science Center, San Antonio, Texas, United States of America.
authors.forename: Amelie G
authors.initials: AG
authors.lastname: Ramirez
authors.affiliation: Institute for Health Promotion Research, University of Texas Health Science Center, San Antonio, Texas, United States of America.
authors.forename: Kipling J
authors.initials: KJ
authors.lastname: Gallion
authors.affiliation: Plant and Environmental Sciences, New Mexico State University, Las Cruces, New Mexico, United States of America.
authors.forename: Mary A
authors.initials: MA
authors.lastname: O'Connell
mesh_terms: D000328:Adult; D000368:Aged; D035843:Biomedical Research; D005260:Female; D006801:Humans; D033181:Information Dissemination; D008297:Male; D008875:Middle Aged; D012108:Research Personnel; D015206:Southwestern United States; D013048:Specimen Handling / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D014015:Tissue Banks