Department of Sociology, University of California Berkeley, Berkeley, California, United States of America.
PLoS One. 2022 Aug 4;17(8):e0270430. doi: 10.1371/journal.pone.0270430. eCollection 2022.
Given increased prevalence of direct-to-consumer (DTC) genetic health tests in recent years, this paper delves into discourses among researchers at professional genomics conferences and lay DTC genetic test users on popular discussion website Reddit to understand the contested value of genetic knowledge and its direct implications for health management. Harnessing ethnographic observations at five conferences and a text -analysis of 52 Reddit threads, we find both experts and lay patient-consumers navigate their own versions of "productive uncertainty." Experts develop genetic technologies to legitimize unsettled genomics as medical knowledge and mobilize resources and products, while lay patient-consumers turn to Internet forums to gain clarity on knowledge gaps that help better manage their genetic risk states. By showing how the uncertain nature of genomics serves as a productive force placing both parties within a mutually cooperative cycle, we argue that experts and patient-consumers co-produce a form of relational medicalization that concretizes "risk" itself as a disease state.
近年来,直接面向消费者(DTC)的基因健康测试越来越普及,本文深入探讨了专业基因组学会议上的研究人员和流行讨论网站 Reddit 上的 DTC 基因测试用户之间的论述,以了解基因知识的有争议价值及其对健康管理的直接影响。本文利用在五次会议上的民族志观察和对 52 个 Reddit 主题的文本分析,发现专家和普通患者消费者都在驾驭自己版本的“富有成效的不确定性”。专家们开发基因技术,使尚未确定的基因组学合法化,将其作为医学知识,并调动资源和产品,而普通患者消费者则转向互联网论坛,以了解知识空白,帮助更好地管理他们的基因风险状态。通过展示基因组学的不确定性如何成为一种富有成效的力量,将双方置于相互合作的循环中,我们认为,专家和患者消费者共同产生了一种关系医学化的形式,将“风险”本身具体化为一种疾病状态。