Advertisement by medical facilities as an opportunity route of APOE genetic testing in Japan: a website analysis.

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-04-01 Epub Date: 2024-01-16 DOI:10.1007/s12687-024-00697-9
Kenichiro Sato, Yoshiki Niimi, Ryoko Ihara, Atsushi Iwata, Takeshi Ikeuchi, Takeshi Iwatsubo
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引用次数: 0

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.

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医疗机构广告作为日本 APOE 基因检测的机会途径:网站分析。
APOE-ε4 等位基因是阿尔茨海默病(AD)的一个重要风险因素。该等位基因检测的一个重要途径是日本医疗机构提供的服务,这些医疗机构在其网站上宣传保险外的 APOE 检测。有人担心,APOE检测的网站广告可能会影响个人充分自我决定是否进行APOE检测的能力。我们对日本医疗机构网站上的APOE基因检测广告进行了横断面调查。我们根据相关专业协会发布的法律法规和指南,预先设定了广告描述的理想特征,并根据这些特征对每个网站进行了评估。我们发现有 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% 为小型诊所。大多数网站都介绍了检测的联系方式、细节和费用。同时,"解释 APOE 作为风险基因"、"解释 APOE 结果的注意事项 "或 "解释检查方法"(如抽血)等功能的描述程度因机构而异。"在这些提供 APOE 检测服务的机构中,约有三分之一的机构认为具有相应专业知识的专家参与了临床实践。这些网站评估结果显示,独立评分者之间存在中度至高度的可靠性。这些结果表明,在日本的一些医疗机构进行保险外 APOE 检测的自我决定可能会受到不适当方式的影响,至少在参加检测的途径上是如此。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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