Su Yeyang, Howard Heidi C, Borry Pascal
Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenovoer 35, Box 7001, 3000, Leuven, Belgium,
J Community Genet. 2011 Sep;2(3):135-46. doi: 10.1007/s12687-011-0048-y. Epub 2011 May 28.
The relatively rapid growth of the direct-to-consumer (DTC) genetic testing market in the last few years has led to increasing attention from both the scientific community and policy makers. One voice often missing in these debates, however, is that of the actual user of these genetic testing services. In order to gain a better picture of the motivations and expectations that propel individuals to purchase DTC genome-wide testing, we conducted an exploratory study based on users' personal stories. Through qualitative content analysis of users' personal stories found on Internet blogs and DTC genetic testing companies' websites, we identified five major sets of motivations and expectations towards DTC genome-wide testing. These themes are related to (1) health, (2) curiosity and fascination, (3) genealogy, (4) contributing to research, and (5) recreation. Obtaining such information can help us to understand how users consider genome-wide testing and forms the basis for further research.
在过去几年中,直接面向消费者(DTC)的基因检测市场增长相对迅速,这引起了科学界和政策制定者越来越多的关注。然而,在这些讨论中经常缺失的一个声音是这些基因检测服务的实际用户的声音。为了更好地了解促使个人购买DTC全基因组检测的动机和期望,我们基于用户的个人故事进行了一项探索性研究。通过对互联网博客和DTC基因检测公司网站上找到的用户个人故事进行定性内容分析,我们确定了对DTC全基因组检测的五大动机和期望。这些主题与(1)健康、(2)好奇心和着迷、(3)家谱、(4)为研究做贡献以及(5)娱乐有关。获取此类信息有助于我们了解用户如何看待全基因组检测,并为进一步研究奠定基础。