Abstract 1370: Barriers to sharing biospecimens or biospecimen data among researchers: qualitative findings from a regional survey.
Authors: Oushy Mai H. , Palacios Rebecca , O'connell Mary A. 
Published: August 2014

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