Title of Presentation
Study Participants’ Attitudes towards and Understandig of Biobanks. Results of an Exploratory Survey in Germany.
Date and Place
Session B7 : Biobanks engaging the public/society
Antje Schuett is a communications expert in health research. She is Head of Communications of the TMF – Technology, Methods, and Infrastructure for Networked Medical Research, an umbrella organization and bottom-up platform for interdisciplinary exchange aiming at identifying and solving the organizational, legal/ethical and technological problems of modern medical research (www.tmf-ev.de). She is coordinator of the TMF’s working group Science Communication, and she is , part of the public engagement team of German Biobank Node (www.bbmri.de). In her spare time, she is pursuing a masters’ degree in Public Health at the London School of Hygiene and Tropical Medicine.
Biobanks are essential resources of future medical research. However, neither the term nor the aims are well known in the public. Experts demand a greater involvement of public and donors to create a better understanding of the purpose and future benefits of biobanks for medical research. In an exploratory cross-sectional survey 187 study participants at three university hospitals in Germany who had agreed to donate their biomaterial were asked to respond to a standardized questionnaire. Main objective was the scientific investigation of donor’s attitudes towards biobanks and their understanding of the notion of a biobank. The attitude towards sample donation is mostly positive. The majority of donors want to support research and next patient generations. However, many of the participants had no (44%) or an imprecise idea (24%) about the use of their donated biomaterials, even though they were previously informed about it. Nevertheless, the respondents expressed a great demand for information: The majority (73%) would like to receive feedback on the research results. In case of incidential/supplemental findings 70% of the donors expect a feedback (50% generally , 20% only in case of a possible intervention). Given the increasing size of biobanks it seems advisable to create better transparency for public and patients. Donors’ information needs should be specifically addressed. Additionally, there is a need for improved patient education: place, time and context of information delivery should be evaluated and web-based information services established. In addition, regular reports on research studies and their results should be provided.