Singleton Amanda, Erby Lori Hamby, Foisie Kathryn V, Kaphingst Kimberly A
GeneDx, Gaithersburg, MD, USA.
J Genet Couns. 2012 Jun;21(3):433-9. doi: 10.1007/s10897-011-9474-6. Epub 2011 Dec 23.
An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were: 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.
对与健康相关的直接面向消费者的基因检测(DTCGT)做出明智的选择需要了解其潜在的益处、风险和局限性。为了了解DTCGT服务的潜在消费者在公司网站上接触到的信息,我们对23个与健康相关的DTCGT网站进行了内容分析。结果显示,益处声明与风险和局限性声明的比例为6比1。最常描述的益处是:1)疾病预防,2)消费者教育,3)个性化医疗建议,以及4)做出健康决策的能力。35%的网站还提到了至少一种检测风险。78%的网站提到了至少一种检测局限性。基于这些信息,潜在消费者可能会对基因检测形成不准确的印象,这可能会影响他们做出明智决策的能力。应鼓励采取措施,在DTCGT公司网站上更均衡地呈现信息。