PS3-3: Biobanking for Research: A Survey of Member Attitudes and Understanding

- Clinical Medicine & Research
Author/s: -Rahm, Alanna -Wrenn, Michelle -Feigelson, Heather
Journal: Clinical Medicine & Research
Year: 2013
Volume: 11
Issue: 3
Pages: 148

Background/Aims Population-based biobanks are an important resource for genetic research. To optimize recruitment of healthy individuals into a research biobank, it is important to know what potential participants understand about this type of research, and the use, risks, and benefits of providing samples to a biobank.Methods We drafted informational recruitment and consent documents and then surveyed approximately 200 adult members in Kaiser Permanente Colorado clinic waiting rooms to evaluate: their understanding of biobanking and the materials we provided; their willingness to provide a blood sample to a biobank; and facilitators and barriers to their participation. Our materials stated that our proposed method of collecting biospecimens would be to collect an extra tube of blood at their next routine or clinical blood draw. Participants were also instructed that we were only gathering information, not actively recruiting for a biobank.Results Our survey population was 65% female, mean age was 55, and 78% non-Hispanic white. Of 190 respondents, 79% understood that they would not need a separate blood draw to contribute to the biobank. Nearly all participants understood that they would not be paid for any products resulting from the use of their blood and would not receive results from their samples (91% and 84%). 81% understood that results from their sample would not be entered into their medical record. 67% of participants indicated they would be willing to contribute to a biobank, and 59% would still participate if providing information to US Government databases was required. 68% would donate a sample because “it is important to contribute to research,” and over half the participants (55%) said they had no concerns about contributing to the biobank. Of those with concerns, 36% said information security was a reason.Conclusions The data from this survey will help identify possible barriers to member participation in a research biobank and help identify ways to improve participation.