Department of Veterans Affairs, Washington, DC, USA.
Genet Med. 2012 Apr;14(4):478-83. doi: 10.1038/gim.2011.67. Epub 2012 Feb 9.
Whether or not to give research results back to individuals whose specimens are used for biomedical research is a subject of considerable controversy. Much of the debate has been focused around the ethical and legal concerns with some consideration of broader social issues such as whether or not people will be affected by such information for employment or health care. Much less attention has been paid to biobanks that collect the specimens used to generate the research findings and the issues and operational requirements for implementing return of individual research results. In this article, we give the biobanks' perspective and highlight that given the diversity among the types of biobanks, it may be difficult to design and implement a blanket policy in this complex area. We discuss the variability in the types of biobanks and some important issues that should be considered in determining whether or not research results should be provided to individuals whose specimens are used in biomedical research. We also discuss challenges that should be considered in implementing any approaches to the return of research results.
是否将研究成果归还给生物医学研究中使用其样本的个人是一个颇具争议的话题。大部分争论集中在伦理和法律问题上,也有一些人考虑了更广泛的社会问题,例如人们是否会因这些信息而在就业或医疗保健方面受到影响。然而,对于收集用于生成研究结果的样本的生物库以及实施个体研究结果返还的问题和操作要求,关注较少。在本文中,我们从生物库的角度出发,并强调鉴于生物库类型的多样性,在这个复杂的领域中设计和实施全面的政策可能具有一定难度。我们讨论了生物库类型的可变性,以及在确定是否应向在生物医学研究中使用其样本的个人提供研究结果时应考虑的一些重要问题。我们还讨论了在实施任何研究结果返还方法时应考虑的挑战。