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

BMC Medical Ethics

Michael Parker³  Elena Togni²  Patrizio Pasqualetti¹  Corinna Porteri² 

[1]Service of Medical Statistics and Information Technology, Fatebenefratelli Foundation for Health Research and Education, AFaR Division, Lungotevere de’ Cenci, 5, 00186 Rome, Italy

[2]Bioethics Unit, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Via Pilastroni 4, 25125 Brescia, Italy

[3]The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK

关键词: Ethical policy;    Bioethics;    Genetic research;    Biobanks;    Public attitudes;   

Others  :  1089977
DOI  :  10.1186/1472-6939-15-81

 received in 2014-06-30, accepted in 2014-11-13,  发布年份 2014

【 摘 要 】

Background

The 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.

Method

A 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.

Results

One 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.

Conclusion

Family 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.

【 授权许可】

   
2014 Porteri et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

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