Helgesson G, Swartling U
Unit for Bioethics, Department of LIME, Karolinska Institutet, Berzelius väg 3, SE-171 77 Stockholm, Sweden.
J Med Ethics. 2008 Mar;34(3):206-9. doi: 10.1136/jme.2006.020016.
Data from the 5-6 year control questionnaire of the ABIS study, a Swedish prospective screening of children for Type 1 diabetes, indicates a genuine trust in the researchers--very few participating families expressed concern about their participation. Nevertheless, a majority do not want their research data to be used beyond the agreement of the original consent. They want to be asked for renewed consent in such cases. A vast majority also want potential high-risk information about their child to be communicated to them. Most participating families want this regardless of whether any preventive treatment is available. Although potential benefits for their child is a motivation for participation for a majority of the respondents, they also claim to be motivated by altruistic reasons. These results are compared to results from two similar studies in the UK.
ABIS研究是一项瑞典针对1型糖尿病儿童的前瞻性筛查，其5-6年对照调查问卷的数据表明，研究对象对研究人员有着真正的信任——很少有参与研究的家庭对参与研究表示担忧。然而，大多数人不希望在超出原始同意书约定的范围使用他们的研究数据。在这种情况下，他们希望被询问是否同意再次使用。绝大多数人还希望了解有关其子女的潜在高风险信息。无论是否有任何预防性治疗，大多数参与研究的家庭都希望如此。尽管对大多数受访者来说，孩子可能获得的益处是参与研究的一个动机，但他们也声称是出于利他主义的原因。这些结果与英国两项类似研究的结果进行了比较。
