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首页> 外文期刊>Journal of Community Genetics >Primary care patients’ views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study
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Primary care patients’ views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study

机译：初级保健患者对直接面向消费者的基因检测的看法和决策，经验和反应：一项纵向研究

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Little is known about the decisions and perspectives of participants undergoing direct-to-consumer genetic testing (DTCGT). The aims of this study were to examine the views, attitudes and decision-making factors of primary care patients regarding DTCGT. Their experience of and reactions to testing also emerged during the study. In this longitudinal, qualitative study, 20 primary care patients participated in DTCGT and individual interviews: (1) prior to testing after the informed consent session, (2) after receiving results, (3) 3 months post-test, and (4) 12 months post-test. Interviews included open-ended questions and all transcripts were analyzed using grounded theory, constant comparison methods. Five key themes emerged from data analysis as participants underwent DTCGT and reflected on their decision over time: (1) limited concerns about DTCGT, (2) motivations for testing, (3) expectations of testing, (4) understanding of results, and (5) impact of testing and results. While a few participants expressed concerns before testing, participants were motivated to test by curiosity, gaining actionable knowledge, and altruism. Most were uncertain of what to expect from DTCGT and needed assistance in understanding results. While many reported testing had no significant impact on them, being relieved or pleased after testing was the most common emotional effect. Notably, a few participants made positive health changes in response to testing. Given the paucity of information about primary care patients and DTCGT, this study adds more in-depth information to the emerging research on how such participants’ view, make decisions about, experience and react to DTCGT over time. Because uncertainty remains about the accuracy of DTCGT, the response of primary care patients to this testing requires further investigation.
机译：关于接受直接面向消费者的基因测试（DTCGT）的参与者的决策和观点知之甚少。这项研究的目的是检查有关DTCGT的初级保健患者的观点，态度和决策因素。他们在测试中的经验和对测试的反应也出现在研究中。在这项纵向，定性研究中，有20名初级保健患者参加了DTCGT和个人访谈：（1）在知情同意后的测试前，（2）收到结果后，（3）测试后3个月和（4）测试后12个月。访谈包括不限成员名额的问题，并使用扎根理论和恒定比较方法对所有成绩单进行了分析。参与者接受DTCGT并随着时间的推移而反思时，数据分析出现了五个关键主题：（1）对DTCGT的关注有限，（2）测试的动机，（3）测试的期望，（4）对结果的理解，以及（ 5）测试和结果的影响。尽管一些参与者在测试前表达了担忧，但参与者出于好奇，获得可操作的知识和利他主义而受到激励。大多数人不确定DTCGT会带来什么，并需要帮助来理解结果。尽管许多报告的测试对他们没有明显影响，但测试后感到放心或高兴是最常见的情绪影响。值得注意的是，一些参与者对测试做出了积极的健康改变。由于缺乏有关基层医疗患者和DTCGT的信息，因此本研究为新兴研究增加了更深入的信息，以了解此类参与者随着时间的推移如何看待，做出决策，体验和对DTCGT做出反应。由于DTCGT准确性的不确定性仍然存在，因此初级保健患者对该测试的反应尚需进一步调查。

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