PDF(Pubmed)
Abstract：
The APOE-ε4 allele(s) is a strong risk factor for Alzheimer\'s disease (AD). A significant point of access for this allele testing is through services provided by medical facilities in Japan, which advertise out-of-insurance APOE testing on their websites. There is a concern that website advertisements for APOE testing may influence the ability for individuals to adequately self-determine whether to undergo APOE testing. We conducted a cross-sectional survey on medical facility websites in Japan advertising APOE genetic testing. We predefined desirable features for advertisement descriptions based on legal regulations and guidelines published by relevant professional societies and evaluated each website according to these features. We identified 220 medical facilities that had posted advertisements on their websites for the provision of APOE genetic testing, of which 85% were small clinics. Contact information, details, and costs of testing were described in most of the websites. Meanwhile, features such as \"explaining APOE as a risk gene,\" \"notes on interpreting APOE results,\" or \"explaining examination methods\" (e.g., blood sampling) were described to a variable degree depending on individual facilities. \"Notes on genetic testing\" or \"referring to genetic counseling\" were hardly referred to, and specialists with appropriate expertise were considered to participate in clinical practice in approximately one-third of these facilities providing APOE testing services. These website evaluation results showed moderate to substantial reliability between independent raters. These results suggest that self-determination of pursuing out-of-insurance APOE testing at some medical facilities in Japan may possibly be influenced in an inappropriate manner, at least in its entry route of taking the test.
摘要：
APOE-ε4等位基因是阿尔茨海默病(AD)的强危险因素。这种等位基因检测的一个重要途径是通过日本医疗机构提供的服务，在他们的网站上宣传无保险APOE测试。有人担心，APOE测试的网站广告可能会影响个人充分自我确定是否接受APOE测试的能力。我们对日本的医疗机构网站进行了一项广告APOE基因检测的横断面调查。我们根据相关专业协会发布的法律法规和指南，为广告描述预先定义了理想的功能，并根据这些功能对每个网站进行了评估。我们确定了220家医疗机构在其网站上发布了提供APOE基因检测的广告，其中85%是小型诊所。联系信息,details,大多数网站都描述了测试费用。同时,诸如“将APOE解释为风险基因，“\”关于解释APOE结果的注释，\"或\"解释考试方法\"(例如，血液采样）根据各个设施的不同程度进行了描述。“关于基因检测的注释”或“提到遗传咨询”几乎没有提到，在提供APOE测试服务的这些设施中，大约三分之一被认为是具有适当专业知识的专家参与临床实践。这些网站评估结果显示，独立评估者之间具有中等至实质性的可靠性。这些结果表明，在日本某些医疗机构进行保险外APOE测试的自决可能会受到不适当的影响，至少在参加考试的入口路线上。
