McVeigh T P, Sweeney K J, Kerin M J, Gallagher D J
Department of Clinical Genetics, Our Lady's Children's Hospital Crumlin, Dublin 12, Ireland.
National University of Ireland, Galway, Ireland.
Ir J Med Sci. 2016 Nov;185(4):825-831. doi: 10.1007/s11845-015-1373-7. Epub 2015 Oct 23.
Progress in diagnostic and therapeutic strategies in medicine is dependent upon high-quality biomedical research. Technological advances have facilitated improved understanding of disease aetiology, and rapidly emerging data promises further progress. Translating this potential into the clinic depends on patient participation in innovative clinical trials. We investigated attitudes to genetic research in Ireland, particularly with respect to commercial and financial implications.
A multi-centre, cross-sectional survey study was performed. Consecutive out-patients attending four clinics were asked to complete paper-based questionnaires. The same questionnaire was publicly available in electronic format on www.surveymonkey.com for 72 h. Data were analysed using SPSS.
351 questionnaires were completed (99 paper, 252 electronic). The majority of respondents were female (n = 288, 82 %), and highly educated, with 244 (70 %) attending college/university. Most participants supported genetic research (267, 76 %), more frequently for common diseases (274, 78 %) than rare disorders (204, 58 %, p < 0.001, χ ). 103 (29 %) had participated in scientific research, and 57 (16 %) had donated material to a bio-bank. The majority (n = 213, 61 %) would not support research with potential financial/commercial gain. 106 (30 %) would decline to participate in research if researchers would benefit financially, compared to 49 (14 %) if the research was supported by a pharmaceutical company (p < 0.001, χ ). Respondents would provide buccal samples (258, 74 %) more readily than tissue (225, 64 %) or blood (222, 63 %).
A high level of support for genetic research exists among the Irish population, but active participation is dependent upon a number of factors, notably, type of biological material required, frequency of the disease in question, and commercial interest of the researchers.
医学诊断和治疗策略的进展依赖于高质量的生物医学研究。技术进步有助于更好地理解疾病病因，快速涌现的数据预示着进一步的进展。将这种潜力转化为临床应用取决于患者参与创新临床试验。我们调查了爱尔兰对基因研究的态度，特别是在商业和财务影响方面。
进行了一项多中心横断面调查研究。要求连续就诊于四家诊所的门诊患者填写纸质问卷。同一问卷在www.surveymonkey.com上以电子格式公开提供72小时。使用SPSS分析数据。
共完成351份问卷（99份纸质，252份电子）。大多数受访者为女性（n = 288，82%），且受教育程度高，有244人（70%）上过大学。大多数参与者支持基因研究（267人，76%），对常见疾病的支持（274人，78%）比对罕见疾病的支持（204人，58%）更频繁（p < 0.001，χ）。103人（29%）参与过科学研究，57人（16%）向生物样本库捐赠过材料。大多数人（n = 213，61%）不支持有潜在经济/商业利益的研究。如果研究人员会获得经济利益，106人（30%）会拒绝参与研究，而如果研究由制药公司资助，这一比例为49人（14%）（p < 0.001，χ）。受访者提供颊拭子样本（258人，74%）比提供组织样本（225人，64%）或血液样本（222人，63%）更愿意。
爱尔兰民众对基因研究有较高程度的支持，但积极参与取决于多个因素，特别是所需生物材料的类型、相关疾病的发生频率以及研究人员的商业利益。
