Perceptions toward establishing a biobank and clinical data warehouse: Voices from the community

Abstract

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 Biobanks. Although major studies were conducted to engage community members in advance of establishing Biobanks, few have included the attitudes/perceptions and educational needs of residents in the planning process. This qualitative pilot project was designed to engage the community in the planning process of establishing a Biobank and Clinical Data Warehouse. A thematic analysis of transcripts from seven focus groups and ten individual interviews revealed four major themes: Altruism, Acceptance, Anxiety & Fear, and Education. The voices from our community indicated a willingness to accept and participate using medical waste (biomaterials), given appropriate education is provided to patient and communities and they can exercise autonomy by signing a consent. This is a pivotal time in health care, especially in lieu of the evolving genomic era. Nurses have a tremendous responsibility and opportunity to become leaders in the era of Biobanking, and bridging the gap between discoveries from Biobanking and improving the quality of clinical care from bench to bedside.