Perspectives, Attitudes, and Willingness to Participate Toward Biobank Research of the Public in the Arab Region

Abstract

Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data have made such studies possible. However, the success of biobanks depends on the willingness of the public to participate in biobank research. We aimed to explore the views of the Arabic public regarding their willingness to participate in biobank research. We used a validated questionnaire to assess the public's perceptions, attitudes, and willingness to participate in biobank research in four Arab low-middle income countries: Egypt, Jordan, Morocco, and Sudan. We recruited 967 participants in this survey. More than half of the respondents did not have prior awareness of biobanks. Although most aspects associated with biobanks had little influence on respondents’ decision to participate in biobank research, two appeared to be pivotal. These included the prospects of sharing biospecimens and medical information with international researchers and the possibility that biobanking research would improve the personal health of donors. Participants expressed concerns regarding the privacy of medical information when shared with physicians and researchers and many did not trust individuals in charge of biobanks. Their willingness to donate biospecimens and medical information was less than 10%. Predictors of willingness to participate in biobank research included previous involvement in research and positive attitudes toward biobanks, Perceptions of biobanks had a negative influence on willingness to participate in biobank research. We conclude there should be additional efforts to raise public awareness, enhance perceptions, and engage the public in all aspects of biobanking research.