Genetic research and donation of tissue samples to biobanks.: What do potential sample donors in the Swedish general public think?
Genetic research and donation of tissue samples to biobanks.: What do potential sample donors in the Swedish general public think?
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DOI：
10.1093/eurpub/cki198
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发表时间：
2006-08-01
影响因子：
4.4
通讯作者：
Hansson, Mats G.
中科院分区：
文献类型：
--
作者：
Kettis-Lindblad, Asa;Ring, Lena;Hansson, Mats G.
背景资料：本研究的目的是确定公众对涉及人体组织的研究的看法，以评估公众的意愿，捐赠样本的生物库，并确定与捐赠样本的意愿相关的因素。方法：横断面调查。2002年10月，对瑞典18-80岁（n = 6000）的普通公众进行随机抽样的邮政问卷调查（回复率49.4%; n = 2928）。结果：大多数受访者对遗传学研究持积极态度。他们对当局评估基因研究风险和益处的能力的信任程度各不相同。个别大学/医院的研究人员获得最大的信任，而县议会（医疗保健提供者）和瑞典议会获得最低的信任。大多数受访者（86.0%）会出于研究目的捐献相关血液样本。另外3.0%的人会提供匿名样本。总的来说，78%的受访者同意捐赠和存储。最常见的动机是未来患者的利益。大多数人对研究的资金来源漠不关心，并将这一判断委托给研究伦理委员会。在调整协变量后，那些更有可能捐赠样本的人是中年人，有孩子，有遗传病的个人经历，是献血者，对遗传研究持积极态度，并且信任专家/机构。结论：大多数公众愿意将样本捐赠给生物库。这种意愿主要是由利他主义驱动的，取决于公众是否知情以及对专家和机构的信任。
Background: The aim of this study was to identify perceptions of the general public regarding research involving human tissues; to assess the public's willingness to donate samples to biobanks; and to identify factors associated with the willingness to donate samples. Methods: Cross-sectional survey. Postal questionnaires to a random sample of the general public in Sweden, 18-80 years of age (n = 6000) in October 2002 (response rate 49.4%; n = 2928). Results: A majority of the respondents had a positive attitude towards genetic research. Their trust in authorities' capability to evaluate the risks and benefits of genetic research varied. Individual university/hospital-based researchers received the greatest trust, while the county councils (health care providers), and the Swedish Parliament received the lowest trust. Most respondents (86.0%) would donate a linked blood sample for research purposes. Another 3.0% would provide an anonymous sample. In total, 78% of the respondents would agree to both donation and storage. The most common motive was benefit of future patients. The majority was indifferent to the funding source for the research and would delegate this judgment to the research ethics committee. After adjusting for covariates, those more likely to donate a sample were middle-aged, had children, had personal experience of genetic disease, were blood donors, had a positive attitude toward genetic research, and had trust in experts/institutions. Conclusions: The majority of the general public is willing to donate a sample to a biobank. The willingness is mainly driven by altruism, and depends on the public being well-informed and having trust in experts and institutions.