Rahm Alanna Kulchak, Feigelson Heather Spencer, Wagner Nicole, Le Anh Quynh, Halterman Eve, Cornish Nadine, Dearing James W
Institute for Health Research, Kaiser Permanente Colorado, Denver, CO 80237-8066, USA.
J Genet Couns. 2012 Jun;21(3):448-61. doi: 10.1007/s10897-011-9477-3. Epub 2012 Jan 26.
This small qualitative study was designed to determine possible attitudes toward and understanding of direct-to-consumer (DTC) genetic testing among members of a large managed care organization, and whether differences might exist between population groups. Ten focus groups were conducted by population type (high risk, White, African American, Hispanic/Latino) to determine knowledge, attitudes and beliefs about DTC genetics. Focus group transcripts were coded for attitudes toward and framing of the issue. Study results found participants were negative towards DTC genetic testing but they also found some aspects useful. Participants framed the issue mainly in terms of disease prevention and uncertainty of reaction to results, with some variation between population types. The concept of an "Informed Consumer," or process to seek information when the issue becomes personally relevant, emerged. This concept suggests that individuals may seek additional assistance to make personally-appropriate choices when faced with a DTC advertisement or genetic test.
这项小型定性研究旨在确定大型管理式医疗组织成员对直接面向消费者(DTC)基因检测的可能态度和理解,以及不同人群之间是否可能存在差异。按人群类型(高风险、白人、非裔美国人、西班牙裔/拉丁裔)开展了10个焦点小组,以确定对DTC基因检测的知识、态度和信念。对焦点小组的文字记录进行编码,以了解对该问题的态度和框架。研究结果发现,参与者对DTC基因检测持负面态度,但他们也发现了一些有用的方面。参与者主要从疾病预防和对检测结果反应的不确定性角度来阐述这个问题,不同人群类型之间存在一些差异。“明智消费者”的概念,即当问题与个人相关时寻求信息的过程,出现了。这一概念表明,当面对DTC广告或基因检测时,个人可能会寻求额外帮助以做出适合自己的选择。