Abstract
A diversity of public participation in biobanking is a highlight for the success of biobanks. It was previously reported that only two-thirds of Jordanians expressed interest in biobanking. To promote public involvement in a biobank, it is imperative to determine the aspects that influence the decision-making to participate. On the basis of a national survey involving 3196 respondents, the influence of 13 biobanking factors was assessed, including returning research results, privacy, freedom of choice, uncertainties about research, monetary and health considerations, and personal belief. Perception toward each factor was also correlated with willingness to participate in a biobank. A considerable number of respondents indicated returning research results as influential in their decision to become biobank donors. Interestingly, whereas the positive perception of availability of general results (39%) correlated with willingness to donate for biobanking, the negative view of unavailability of individualized results (47%) did not correlate with unwillingness. Religious permission of sample donation for research had the strongest positive influence (61%) and the highest correlation to participate among positively perceived factors. Unspecified research was highly indicated as a negative factor (45%), but did not correlate with unwillingness to become a biobank donor, whereas allowed withdrawal had a positive effect (31%) and correlation to contribute to biobanking. The negative perception of accessing medical information (9.5%) and re-contact (8.5%) had the strongest correlation with unwillingness to donate to a biobank. These results may provide an insight into how to formulate strategies to promote public participation in biomedical research and biobanking.
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Acknowledgements
This work was supported by the Arab Fund for Economic and Social Development (AFESD). The KAP Survey was implemented by King Hussein Institute for Biotechnology and Cancer (KHIBC) under The National Life Science Research and Biotechnology Promotion (LSR/BTP) Initiative in Jordan.
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Ahram, M., Othman, A., Shahrouri, M. et al. Factors influencing public participation in biobanking. Eur J Hum Genet 22, 445–451 (2014). https://doi.org/10.1038/ejhg.2013.174
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DOI: https://doi.org/10.1038/ejhg.2013.174
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