King's College London, Centre for Biomedicine and Society, England, UK.
Account Res. 2011 May;18(3):132-47. doi: 10.1080/08989621.2011.575032.
While the availability of genome tests on the internet has given rise to heated debates about the likely impact on personal genome information on test-takers, on insurance, and on healthcare systems, in this article I argue that a more tangible effect of personal genomics is that it has started to change how participation in disease research is conceived and enacted. I examine three models of research participation that personal genomics customers are encouraged to engage in. I conclude with an evaluation of the pitfalls and benefits of "crowdsourcing" genetic disease research in the context of personal genomics.
虽然互联网上的基因组测试的出现引发了关于测试者的个人基因组信息对保险和医疗保健系统可能产生的影响的激烈争论，但在本文中，我认为个人基因组学更具实际意义的影响是，它已经开始改变人们对疾病研究参与的理解和实施方式。我研究了个人基因组学客户被鼓励参与的三种研究参与模式。最后，我在个人基因组学的背景下，对“众包”遗传疾病研究的缺陷和益处进行了评价。
