What Potential Donors in Research Biobanking Want to Know: A Large Population Study of the Italian Twin Registry.

Abstract

Donation of human tissues for research and ELSI (ethical, legal, and social issues) of biobanking are increasingly debated issues. While several studies have highlighted patients' concerns, little is known about opinions and preferences of healthy potential donors. Further investigations in this respect may allow communication procedures tailored to participants' needs. Based on the Italian Twin Registry, a cross-sectional survey was conducted among twins who had not yet donated biological samples for research. The objective was to assess the importance these potential donors attributed to specific procedures and pieces of communication related to research biobanking. A self-administered questionnaire was constructed and validated. Items were as follows: potential agreement on use of biological samples for research; knowledge of biobanks; and importance given to privacy protection and to communication of general and individual tests results, study objectives, type and amount of participant involvement, location and duration of sample storage, and benefits and potential risks. Multivariate analysis was performed to estimate the association of these items with sociodemographic factors as well as with perceived health status and chronic or long-term diseases. The questionnaire was mailed to 4894 twins aged 18-65 (response rate 34%). One-third of subjects already knew about biobanks, 52% had some knowledge, and 20% were uninformed. A majority expressed unconditional agreement to sample use for research. Only 6% of respondents considered privacy protection not important in research biobanking. Knowledge of biobanks predicted attention to most of the issues. Higher education was associated with more frequent concern about type and amount of involvement, but less frequent concern about place and time of storage, and presence of benefits. Women were more attentive to research biobanking. This study supports the need of procedures tailored on different donors' concerns and highlights the social value of population biobanks. Furthermore, the results call for greater efforts in the promotion of research biobanking.