Department of Medical Psychology, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
Am J Med Genet A. 2010 Oct;152A(10):2482-92. doi: 10.1002/ajmg.a.33617.
The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of a sample of the general Dutch population (N=1,163) and patients with asthma, rhinitis, and thrombosis (N=515) who completed a survey including six fictitious genetic research results each presented as aggregate and individual result, varied for treatability and kind of disease. Five questions assessed attitudes towards researchers' duties to communicate research results. Additionally, background characteristics were measured. A majority of the respondents wanted to receive aggregate results as well as individual results. A small majority (59%) held the view that researchers should communicate individual results with no health consequences. One third agreed with an information duty only when treatment is available. A preference for individual results and an attitude in favor of communicating results were both associated with belonging to the general Dutch population rather than being a patient, wanting to learn about own health as the reason for biobank-participation, a monitoring coping style, a general desire for health information, perceived meaningfulness of genetic information and no anticipated anxiousness. A sizable majority of respondents showed a high information preference for individual results, even when it is unclear that treatment is available. Fewer were of the opinion that researchers should make this possible. For their communication policy biobanks should take notice of (potential) participants' high information preferences and expectations.
(a) 他们对接收生物库遗传研究结果的偏好；(b) 他们对研究人员传达研究结果的职责的态度。总共分析了 1678 人，包括一般荷兰人群样本（N=1163）和患有哮喘、鼻炎和血栓的患者（N=515），他们完成了一项调查，其中包括六个虚构的遗传研究结果，每个结果都作为汇总结果和个体结果呈现，根据可治疗性和疾病类型而有所不同。有五个问题评估了研究人员传达研究结果的职责的态度。此外，还测量了背景特征。大多数受访者希望收到汇总结果和个体结果。略多于一半的人（59%）认为，研究人员应该传达没有健康后果的个体结果。三分之一的人同意只有在有治疗方法时才会有信息义务。对个体结果的偏好和支持传达结果的态度都与属于一般荷兰人群而非患者有关，他们希望了解自己的健康状况作为参与生物库的原因、监测应对方式、对健康信息的普遍渴望、认为遗传信息有意义以及没有预期的焦虑。绝大多数受访者表现出对个体结果的高度信息偏好，即使不清楚是否有治疗方法可用。而认为研究人员应该使其成为可能的人则较少。生物库在制定其沟通政策时，应注意（潜在）参与者对个体结果的高度信息偏好和期望。
