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首页> 外文期刊>AJOB Primary Research >Primary Care Patients' Views, Attitudes, and Decision-Making FactorsRegarding Direct-to-Consumer Personal Genome Testing: Results From a Qualitative Study
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Primary Care Patients' Views, Attitudes, and Decision-Making FactorsRegarding Direct-to-Consumer Personal Genome Testing: Results From a Qualitative Study

机译：初级保健患者对直接面向消费者的个人基因组测试的观点，态度和决策因素：定性研究的结果

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Background: Direct-to-consumer personal genome testing (PGT) is a relatively new service where thousands to millions of single nucleotide polymorphisms, or common genetic variants, are examined and variable risk estimates for diseases and conditions are given. Such genetic testing is available directly to the public and raises ethical, scientific, regulatory, and clinical issues. Limited empirical research exists about how primary care patients view PGT. The goal of this exploratory study was to assess the attitudes and views, decision-making factors, and ethical considerations of primary care patients about direct-to-consumer PGT. Methods: This qualitative study involved recruiting primary care patients from an urban academic medical center clinic and conducting four focus groups (n = 29). Participants were questioned about their views, attitudes, and decision-making considerations regarding direct-to-consumer PGT. Grounded theory methodology was used to analyze the data for categories that emerged from the focus group discussions. Results: Three primary categories emerged from the data analysis: (I) the worth of direct-to-consumer PGT; (II) motivations for testing; and (III) concerns about testing, including ethical issues. Participants reported that they were motivated to test by a desire for information about themselves and for their families, the potential for intervention and prevention of disease, and altruism. Concerns expressed included questions about the accuracy and reliability of this testing, interpretation of results, anticipated risks of revealing results, and ethical issues including confidentiality. Conclusions: This study describes in detail the decision-making considerations of primary care patients about direct-to-consumer PGT. Participants articulated motivations for and potential benefits of PGT, along with perceived concerns, risks, and ethical issues raised by such testing. The study highlights the need for further examination of whether and how these considerations influence decisions and actions of additional primary care populations.
机译：背景：直接面向消费者的个人基因组测试（PGT）是一项相对较新的服务，可以检查成千上万的单核苷酸多态性或常见的遗传变异，并给出疾病和状况的可变风险估计。此类基因检测直接向公众开放，并引发了道德，科学，法规和临床问题。关于初级保健患者如何看待PGT的经验研究有限。这项探索性研究的目的是评估初级保健患者对直接面向消费者的PGT的态度和观点，决策因素以及道德考量。方法：该定性研究涉及从城市学术医疗中心诊所招募初级保健患者，并进行四个焦点小组（n = 29）。参与者被问及他们对直接面向消费者的PGT的看法，态度和决策考虑因素。扎根理论方法用于分析焦点小组讨论中出现的类别数据。结果：从数据分析中得出了三个主要类别：（I）直接面向消费者的PGT的价值; （II）测试动机; （III）对测试的担忧，包括道德问题。参与者报告说，他们渴望进行关于自己和家人的信息，干预和预防疾病以及利他主义的潜力的测试。所表达的担忧包括有关该测试的准确性和可靠性，结果的解释，揭示结果的预期风险以及包括保密性在内的道德问题。结论：本研究详细描述了初级保健患者对直接面向消费者的PGT的决策考虑因素。参与者阐明了PGT的动机和潜在利益，以及此类测试引发的可察觉的关注，风险和道德问题。该研究强调需要进一步检查这些考虑因素是否以及如何影响其他初级保健人群的决定和行动。

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