Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. Results: While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. Conclusions: Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.
Public Health Genomics

中文翻译：

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确定公众对全基因组测序的态度，以告知基因组学与护理的整合

简介：全球测序计划和商业基因组测试产品的增长表明，公众将越来越多地面临有关测序的决定。了解公众的态度可以帮助将排序纳入护理的努力，并为制定公共教育和外展战略提供信息。方法：一项 48 项在线调查在加拿大东部的 Facebook 上刊登广告，并于 2018 年底在 SurveyMonkey 上进行。该调查衡量了公众对全基因组测序的兴趣以及对使用小插曲、缩放和开放式项目进行测序的各个方面的态度。结果：虽然对测序的兴趣很高，但也观察到了批评的态度。特别是，测量患者控制特征和基因组数据选择的项目得到了受访者的强烈支持。大多数人希望提前说明如何使用他们的数据，保留在以后提取样本的能力，签署书面同意书，并在测序前与遗传顾问交谈。经常观察到对隐私和未经授权访问数据的担忧。教育水平是最常与态度陈述相关的社会人口变量，因此教育水平较高的人通常表现出更多的批评态度。结论：此处确定的态度可用于为基因组医学实施策略的制定提供信息。调查结果表明，卫生系统必须解决患者对隐私、同意做法的担忧，以及通过公共宣传和教育控制基因组数据发生情况的强烈愿望。需要明确向公众传达的具体监督程序和政策。
公共卫生基因组学