Hansson Mats G
Centre for Bioethics at Karolinska Institutet and Uppsala University, Department of Public Health and Caring Sciences, Uppsala Science Park, SE-75185 Uppsala, Sweden.
Stud Hist Philos Biol Biomed Sci. 2006 Sep;37(3):520-32. doi: 10.1016/j.shpsc.2006.06.006. Epub 2006 Aug 22.
In the debate about human bio-sampling the interests of patients and other sample donors are believed to stand against the interests of scientists and of their freedom of research. Scientists want efficient access to and use of human biological samples. Patients and other donors of blood or tissue materials want protection of their integrity. This dichotomy is reflected in the Swedish law on biobanks, which came into effect 1 January 2003. In this article I argue that if the basic interest of scientists using human biological samples is in increasing knowledge and developing better treatments, and if the concept 'integrity' is properly understood, then sample donors should also be interested in promotion of efficiency as well as in the protection of their integrity. The basic premise of this argument is that donors of samples have interests related to the donation and use of samples as well as to the use of the results of the research, that is, new medical products and treatments. They have a role both as donors or participants in research and as end users of the research. I conclude that if (i) access to information acquired through biobank research is strictly limited to researchers, (ii) the information is protected by secrecy safeguards through coding and (iii) the procedures governing the research are open to public and democratic control, then most research using human biobanks may be carried out on the basis of making general information available when collecting biological samples, without further contact with participants.
在关于人类生物样本采集的辩论中，患者及其他样本捐赠者的利益被认为与科学家的利益及其研究自由相冲突。科学家希望能够高效获取并使用人类生物样本。而患者及其他血液或组织样本捐赠者则希望自身的权益得到保护。这种分歧在2003年1月1日生效的瑞典生物样本库法律中有所体现。在本文中，我认为，如果使用人类生物样本的科学家的根本利益在于增加知识储备和研发更好的治疗方法，并且如果能正确理解“权益”这一概念，那么样本捐赠者同样会对提高效率以及保护自身权益感兴趣。这一论点的基本前提是，样本捐赠者在样本的捐赠和使用以及研究成果（即新的医疗产品和治疗方法）的应用方面都存在利益关系。他们既是研究的捐赠者或参与者，也是研究的最终用户。我的结论是，如果（i）通过生物样本库研究获取的信息严格限于研究人员使用，（ii）该信息通过编码受到保密措施的保护，并且（iii）研究的管理程序接受公众和民主监督，那么大多数使用人类生物样本库的研究在收集生物样本时，可以在提供一般信息的基础上进行，而无需与参与者进一步接触。
