Public’s attitudes on participation in a biobank for research: an Italian survey

Abstract

BackgroundThe creation of biobanks depends upon people’s willingness to donate their samples for research purposes and to agree to sample storage. Moreover, biobanks are a public good that requires active participation by all interested stakeholders at every stage of development. Therefore, knowing public’s attitudes towards participation in a biobank and biobank management is important and deserves investigation.MethodA survey was conducted among family members of patients attending the outpatient department of our institute for a geriatric or neurological visit, documenting their willingness to participate in a biobank and their views on the legal-ethical aspects of biobank management. Information regarding subjects’ attitudes on biomedical research in general and genetic research in particular was also collected. Participants’ data on biobanks were compared with data previously collected from the Italian ethics committees (ECs) to evaluate the extent to which lay people and ethics committees share views and concerns regarding biobanks.ResultsOne hundred forty-five subjects took part in the survey. The willingness to give biological samples for the constitution of a biobank set up for research purposes was declared by 86% of subjects and was modulated by subjects’ education. People in favour of providing biological samples for a biobank expressed a more positive view on biomedical research than did people who were not in favour; attitude towards genetic research in dementia was the strongest predictor of participation. Different from ECs that prefer specific consent (52%) and do not choose the option of broad consent (8%) for samples collection in a biobank, participants show a clear preference for broad consent (57%), followed by partially restricted consent (16%), specific consent (15%), and multi-layered consent (12%). Almost all of the subjects available to contribute to a biobank desire to receive both individual research results and research results of general value, while around fifty per cent of ECs require results communication.ConclusionFamily members showed willingness to participate in a biobank for research and expressed a view on the ethical aspects of a biobank management that differ on several issues from the Italian ECs’ opinion. Laypersons’ views should be taken into account in developing biobank regulations.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-6939-15-81) contains supplementary material, which is available to authorized users.

Socio-Cultural, Legal and Ethical Issues Related to Gene Banking in Oman

“…Similar to other studies [12][13][14], this study revealed a low rate of knowledge on the practice of genetic database banking (17%), of whom the majority were of higher level of education. However, supportive public opinion on acceptance of gene banking, participation in genetic research and setting protection laws among the aware and the unaware groups after being introduced to the subject, achieved good results, also similar to the findings in Refs.…”

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“…Structuring ethics and consent standards: Systematic qualitative study of the opinions to cancer biobanking performed at public and private hospitals in NSW demonstrated that informed consent for general use of biospecimens for future unspecified research was given willingly by the majority of patients and parents of children and was supported by lay persons. 53,54 Worldwide, reports regarding informed consent for the collection of tissues for future unspecified research by biobanks 55,56 indicate that willingness to consent was independent of all factors including age, sex, and tumor type. Yet, debates about the consents, its scope (broad or specific), the merits of opt-in and opt-out consenting, and content of consent requests have not been resolved.…”