Suppr超能文献

医学化风险:专家和消费者如何管理遗传健康测试中的不确定性。

Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing.

机构信息

Department of Sociology, University of California Berkeley, Berkeley, California, United States of America.

出版信息

PLoS One. 2022 Aug 4;17(8):e0270430. doi: 10.1371/journal.pone.0270430. eCollection 2022.

Abstract

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.

摘要

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。

相似文献

1
Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing.
PLoS One. 2022 Aug 4;17(8):e0270430. doi: 10.1371/journal.pone.0270430. eCollection 2022.
2
3
Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.
J Med Internet Res. 2015 Dec 14;17(12):e279. doi: 10.2196/jmir.4378.
4
Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions.
PLoS One. 2020 Sep 8;15(9):e0238644. doi: 10.1371/journal.pone.0238644. eCollection 2020.
5
Genetic counseling following direct-to consumer genetic testing: Consumer perspectives.
J Genet Couns. 2021 Feb;30(1):329-334. doi: 10.1002/jgc4.1309. Epub 2020 Jul 9.
6
Direct-to-consumer personal genome testing and cancer risk prediction.
Cancer J. 2012 Jul-Aug;18(4):293-302. doi: 10.1097/PPO.0b013e3182610e38.
7
Consumer Perceptions of Interactions With Primary Care Providers After Direct-to-Consumer Personal Genomic Testing.
Ann Intern Med. 2016 Apr 19;164(8):513-22. doi: 10.7326/M15-0995. Epub 2016 Mar 1.
9
Direct-to-Consumer Genetic Testing: User Motivations, Decision Making, and Perceived Utility of Results.
Public Health Genomics. 2017;20(1):36-45. doi: 10.1159/000455006. Epub 2017 Jan 10.
10
Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services.
Front Genet. 2020 Apr 28;11:416. doi: 10.3389/fgene.2020.00416. eCollection 2020.

引用本文的文献

1
Expertise and the "new science" of eugenics.
Soc Sci Med. 2025 Mar;369:117829. doi: 10.1016/j.socscimed.2025.117829. Epub 2025 Feb 7.

本文引用的文献

3
Direct-to-consumer genetic testing: a comprehensive view.
Yale J Biol Med. 2013 Sep 20;86(3):359-65. eCollection 2013 Sep.
4
Counseling customers: emerging roles for genetic counselors in the direct-to-consumer genetic testing market.
J Genet Couns. 2013 Apr;22(2):277-88. doi: 10.1007/s10897-012-9548-0. Epub 2012 Oct 25.
5
Direct-to-consumer genetic testing: perceptions, problems, and policy responses.
Annu Rev Med. 2012;63:23-33. doi: 10.1146/annurev-med-062110-123753. Epub 2011 Sep 1.
6
The general public's understanding and perception of direct-to-consumer genetic test results.
Public Health Genomics. 2012;15(1):11-21. doi: 10.1159/000327159. Epub 2011 Jun 30.
7
Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants.
Public Health Genomics. 2012;15(1):22-30. doi: 10.1159/000327296. Epub 2011 Jun 3.
8
Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market.
J Community Genet. 2010 Sep;1(3):101-106. doi: 10.1007/s12687-010-0023-z. Epub 2010 Oct 8.
9
Health-care referrals from direct-to-consumer genetic testing.
Genet Test Mol Biomarkers. 2010 Dec;14(6):817-9. doi: 10.1089/gtmb.2010.0051. Epub 2010 Oct 28.

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验