Attitudes and Acceptance from the community toward establishing a sample Bio-Repository/Clinical Data Warehouse

Background:Advances in genomic technology and the development of sophisticated analytical software have increased the interest and establishment of DNA databanks worldwide. The establishment of these bio-banks can lead to improved genetic epidemiological knowledge of common complex diseases. As biobanking projects become more prevalent as an enabling resource for large –scale genetic research, it is important to assess public opinions from the community whose samples populate the banks. Nursing literature lacks evidence that a significant number of nurses are currently involved in the planning and establishment of DNA repository and data warehouse to enhance genetic research.

Purpose: The specific aim of this pilot project is to assess community attitudes and acceptance as part of the planning process to establish a DNA sample Biorepository and data warehouse.

Methods: Mixed-method approach (Focus groups, interviews, Surveys), with Community-Engagement Research (CEnR) as the guiding framework to collaborate and dialogue with communities.

Results: 10 Informant interviews have been conducted, 3 Focus Groups, and Development of the Questionnaire Preliminary results indicate community acceptance but an overarching theme was the need for community education.

Conclusions: CEnR presents an avenue for the public to influence the direction of project development and is in line with project transparency and open-mindless at all levels. The CEnR approach will help to facilitate the acceptance, understanding and participation of the community toward the establishment of a DNA Repository.