Kaphingst Kimberly A, McBride Colleen M, Wade Christopher, Alford Sharon Hensley, Brody Lawrence C, Baxevanis Andreas D
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
J Med Internet Res. 2010 Sep 29;12(3):e41. doi: 10.2196/jmir.1587.
Few data exist to inform concerns raised by online direct-to-consumer marketing of genetic susceptibility tests, such as those offered by commercial entities like 23andme, Navigenics, and DNA Direct. The Multiplex Initiative, a population-based study of healthy adults, provides the first opportunity to evaluate how use of a Web-based decision tool that conveyed information about a genetic susceptibility test influenced individuals' test decisions.
To inform the ongoing debate over whether individuals offered genetic susceptibility testing without the involvement of a health care provider (eg, through direct-to-consumer testing) can make informed decisions about testing when guided by online decision aids.
Participants were 526 members of a large health maintenance organization aged 25 to 40 years old who visited a study website. Multivariate logistic regression models were tested to examine the association of website usage with downstream test decisions.
Participants viewed an average of 2.9 of the 4 pages introducing the multiplex test, 2.2 of the 8 pages describing the health conditions, and 3.2 of the 15 pages describing the genes. For each page viewed, participants were more likely to describe their decision-making as easy (odds ratio [OR] 1.04, 95% confidence interval [CI] 1.01-1.07) and to decide to be tested (OR 1.08, 95% CI 1.05-1.11).
Healthy adults in this study perceived Web-based genomic information presented using evidence-based communications approaches to be helpful in supporting both decisions to test and not to test. Continued research is needed to ensure that these results generalize to target groups with lower literacy and less Internet savvy.
关于基因易感性检测的在线直接面向消费者营销所引发的担忧,几乎没有相关数据可供参考,比如像23andMe、Navigenics和DNA Direct等商业机构所提供的检测服务。“多重检测计划”是一项针对健康成年人的基于人群的研究,它首次提供了一个机会来评估使用一个传达基因易感性检测信息的网络决策工具如何影响个体的检测决策。
为正在进行的关于在没有医疗保健提供者参与的情况下(例如通过直接面向消费者的检测)提供基因易感性检测时,个体在在线决策辅助工具的引导下能否做出明智检测决策的辩论提供信息。
参与者是一家大型健康维护组织中526名年龄在25至40岁之间访问研究网站的成员。测试了多变量逻辑回归模型,以检验网站使用情况与下游检测决策之间的关联。
参与者平均浏览了介绍多重检测的4个页面中的2.9个、描述健康状况的8个页面中的2.2个以及描述基因的15个页面中的3.2个。每浏览一个页面,参与者就更有可能认为他们的决策很容易(优势比[OR]为1.04,95%置信区间[CI]为1.01 - 1.07),并决定接受检测(OR为1.08,95%CI为1.05 - 1.11)。
本研究中的健康成年人认为,使用基于证据的沟通方式呈现的网络基因组信息有助于支持检测或不检测的决策。需要继续开展研究,以确保这些结果能够推广到识字水平较低和互联网知识较少的目标群体。