Abstract
BackgroundStorage of leftover biosamples generates rich biobanks for future studies, saving time and money and limiting physical impact to sample donors.ObjectiveTo investigate the attitudes of Chinese patients and the general public on providing consent for storage and use of leftover biosamples.Design, Setting and ParticipantsCross-sectional surveys were conducted among randomly selected patients admitted to a Shanghai city hospital (n = 648) and members of the general public (n = 492) from May 2010 to July 2010.Main Outcome MeasuresFace-to-face interviews collected respondents-report of their willingness to donate residual biosample, trust in medical institutions, motivation for donation, concerns of donated sample use, expectations for research results return, and so on.ResultsThe response rate was 83.0%. Of the respondents, 89.1% stated that they completely understood or understood most of questions. Willingness to donate residual sample was stated by 64.7%, of which 16.7% desired the option to withdraw their donations anytime afterwards. Only 42.3% of respondents stated they “trust" or “strongly trust" medical institutions, the attitude of trusting or strongly trusting medical institutions were significantly associated with willingness to donate in the general public group.(p<0.05) The overall assent rate for future research without specific consents was also low (12.1%). Hepatitis B virus carriers were significantly less willing than non-carriers to donate biosamples (32.1% vs. 64.7%, p<0.001).ConclusionsLow levels of public trust in medical institutions become serious obstacle for biosample donation and biobanking in China. Efforts to increase public understanding of human medical research and biosample usage and trust in the ethical purposes of biobanking are urgently needed. These efforts will be greatly advanced by the impending legislation on biobanking procedures and intent, and our results may help guide the structure of such law.
Highlights
Human biological material, including tissues, blood and other body fluids and excretions, has emerged as an important tool for biomedical research [1], often supplementing and sometimes replacing the animal or cell culture based research models
42.3% of respondents stated they ‘‘trust’’ or ‘‘strongly trust’’ medical institutions, the attitude of trusting or strongly trusting medical institutions were significantly associated with willingness to donate in the general public group.(p,0.05) The overall assent rate for future research without specific consents was low (12.1%)
A verbal informed consent regarding the goals of the study and the willingness to participate was given to the potential respondents
Summary
Human biological material, including tissues, blood and other body fluids and excretions, has emerged as an important tool for biomedical research [1], often supplementing and sometimes replacing the animal or cell culture based research models. The biobanks that store such samples are rapidly evolving into rich resources for new and on-going studies, providing biosamples that may be investigated by new generation technologies or reassessed as validation cohorts in established studies. The success of such legislation and the public’s willingness to participate in biosample donation and biobanking will be affected by issues of informed consent type (broad or specific) [2,3,4], benefit sharing [5,6], individual privacy protection [7], information access [8,9] and public trust [9,10]. Storage of leftover biosamples generates rich biobanks for future studies, saving time and money and limiting physical impact to sample donors
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