DDRIG: Constructions and Understandings of Cancer Genetic Risk

DDRIG：癌症遗传风险的构建和理解

• 批准号: 1556980
• 负责人: Carole Vance
• 金额: $ 1.26万
• 依托单位: Columbia University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-02-15 至 2018-01-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1556980&HistoricalAwards=false
• 关键词: DDRIG; Constructions; Understandings; Cancer; Genetic

General Audience Summary This study seeks to shed light on how genetic risk for cancer is made visible, communicated, understood, and acted upon. Breast and ovarian cancer (BOC) genetic testing in the U.S. has recently undergone dramatic changes. The standard initial screening offered to patients has expanded from a test for high-risk mutations on two genes to a test for mutations on as many as 29 genes, many of which pose only a low or moderate risk of developing cancer. Through 12 months of fieldwork combining document analysis, participant observation, and in-depth interviews with health professionals and mutation carriers, this study will investigate the following three key questions. How is BOC genetic risk made visible in the era of multi-gene panel testing? How is genetic risk information understood and acted upon by diverse carriers of BOC mutations? Finally, how are relationships among and between laboratory researchers, medical experts, and patients being transformed by the utilization of multi-gene panel tests? Examining these questions will help to reveal the social and structural dimensions of risk and genetic medicine. The proposed study will broaden and deepen understandings of the personal, clinical, and societal implications of the recent expansions of genetic testing. Its findings might also aid patients in medical decision-making and enhance broader public literacy in genetic biomedicine.Technical Summary This project brings STS frameworks to the study of risk. Using tools and theoretical frameworks from science and technology studies (STS), medical sociology, and gender studies, this project aims to understand how these recent shifts in the practices of genetic medicine are shaping the active construction of risk, beliefs and communication about risk, risk identities, and risk management decisions. It aims to examine how certain ideas about genetic risk gain credibility over others; how genetic risk is actively produced, not just discovered; and how social and cultural values are embedded in genetic risk technologies and risk management guidelines. This project also presents an opportunity to empirically investigate and further develop social theories on patienthood, biomedicalization, and health citizenship. This study will also explore whether and under what circumstances patients of BOC genetic medicine--a rapidly changing field that requires highly technical and specialized knowledge--form biosocial communities and act as empowered agents in relation to medical authority.

普通观众摘要 本研究旨在阐明如何使癌症的遗传风险变得可见、传达、理解和采取行动。美国的乳腺癌和卵巢癌 (BOC) 基因检测最近发生了巨大变化。为患者提供的标准初始筛查已从对两个基因的高风险突变测试扩展到对多达 29 个基因的突变测试，其中许多基因仅具有低度或中度患癌症的风险。通过为期12个月的实地考察，结合文献分析、参与观察以及对卫生专业人员和突变携带者的深入访谈，本研究将探讨以下三个关键问题。在多基因面板检测时代，如何让 BOC 遗传风险变得可见？ BOC 突变的不同携带者如何理解遗传风险信息并采取行动？最后，实验室研究人员、医学专家和患者之间的关系如何通过多基因面板测试的利用而改变？研究这些问题将有助于揭示风险和遗传医学的社会和结构层面。拟议的研究将扩大和加深对近期基因检测扩展对个人、临床和社会影响的理解。其研究结果还可能帮助患者做出医疗决策，并提高更广泛的公众对遗传生物医学的认识。 技术摘要 该项目将 STS 框架引入风险研究中。该项目利用科学技术研究 (STS)、医学社会学和性别研究的工具和理论框架，旨在了解遗传医学实践的这些最新转变如何塑造风险、关于风险的信念和沟通、风险身份和风险管理决策的积极构建。它的目的是研究关于遗传风险的某些观点如何比其他观点更可信；遗传风险是如何主动产生的，而不仅仅是被发现；以及如何将社会和文化价值观融入遗传风险技术和风险管理指南中。该项目还提供了一个机会来实证调查和进一步发展有关病人、生物医学化和健康公民的社会理论。这项研究还将探讨 BOC 基因医学（一个快速变化的领域，需要高技术和专业知识）的患者是否以及在什么情况下形成生物社会社区，并充当与医疗权威相关的授权代理人。