School of Medicine, The University of Jordan, Amman, Jordan.
Faculty of Dentistry, Cairo University, Cairo, Egypt.
BMC Med Ethics. 2022 Dec 1;23(1):122. doi: 10.1186/s12910-022-00855-z.
Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data from diverse segments of the population have made such research possible. However, the success of biobank research depends on the willingness of the public to participate in this type of research. We aimed to explore the factors associated with the willingness of the public to participate in biobank research from four low- and middle-income countries in the Arab region (Egypt, Jordan, Morocco, and Sudan). We used a previously validated questionnaire to assess several constructs that included the public's perceptions, attitudes, and willingness to participate in biobank research. We recruited 967 participants. More than half did not have prior awareness of biobanks. Participants' willingness to donate biospecimens and health data was less than 10%. Our results also showed that participants harbored concerns with trust, privacy, and with data-sharing involving international researchers. Predictors of willingness to participate in biobank research included no previous involvement in research and positive attitudes toward biobanks. Finally, our study showed several differences between the four countries regarding several of the investigated constructs. We conclude there should be additional efforts to raise public awareness and enhance perceptions of the public in biobanking research to enhance trust. We further recommend qualitative research to explore the underlying factors that contribute to the public's concerns with international data sharing that would enhance global health.
基于人群的基因组学研究已成功鉴定出与疾病相关的遗传变异。高质量的生物样本与来自人群不同部分的信息丰富的健康数据相联系，使得此类研究成为可能。然而，生物银行研究的成功取决于公众参与此类研究的意愿。我们旨在从阿拉伯地区的四个中低收入国家（埃及、约旦、摩洛哥和苏丹）探讨与公众参与生物银行研究意愿相关的因素。我们使用了先前经过验证的问卷来评估包括公众对生物银行研究的看法、态度和参与意愿在内的几个结构。我们招募了 967 名参与者。超过一半的人以前没有听说过生物库。参与者捐赠生物样本和健康数据的意愿不足 10%。我们的研究结果还表明，参与者对信任、隐私以及涉及国际研究人员的数据共享表示担忧。参与生物库研究意愿的预测因素包括以前没有参与过研究以及对生物库的积极态度。最后，我们的研究显示，四个国家在几个调查结构方面存在差异。我们得出结论，应该进一步努力提高公众意识，增强公众对生物库研究的认识，以增强信任。我们进一步建议进行定性研究，以探讨导致公众对国际数据共享的担忧的潜在因素，这将有助于全球健康。
