Etchegary Holly, Pullman Daryl, Simmonds Charlene, Rabie Zoha, Rahman Proton
Assistant Professor Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, Newfoundland, Canada.
Professor of Medicine (Bioethics), Faculty of Medicine, Memorial University, St. John's, Newfoundland, Canada.
Public Health Genomics. 2021;24(5-6):229-240. doi: 10.1159/000515952. Epub 2021 May 26.
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.
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.
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.
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.
全球测序计划的发展以及商业基因组检测服务的增加表明，公众将越来越多地面临有关测序的决策。了解公众态度有助于将测序整合到医疗护理中，并为公共教育和推广策略的制定提供信息。
2018年末，在加拿大东部的脸书上发布了一项包含48个项目的在线调查，并在SurveyMonkey上进行托管。该调查使用情景描述、量表和开放式问题来衡量公众对全基因组测序的兴趣以及对测序各个方面的态度。
虽然对测序的兴趣很高，但也观察到了批判性态度。特别是，受访者强烈认可那些衡量患者对基因组数据的控制和选择特征的项目。大多数人希望预先明确其数据的使用方式，保留日后撤回样本的权利，签署书面同意书，并在测序前与遗传咨询师交谈。人们经常表达对隐私和数据未经授权访问的担忧。教育水平是最常与态度陈述相关的社会人口统计学变量，即教育程度较高的人通常表现出更批判性的态度。
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。研究结果表明，卫生系统必须通过公众宣传和教育来解决患者对隐私、同意做法以及强烈希望控制其基因组数据用途的担忧。需要制定向公众明确传达的具体监督程序和政策。
