{"title":"“这没有任何意义”——在对基因和基因检测结果进行解读的知识背景下,从家族癌症的角度出发","authors":"Mavis Machirori, C. Patch, A. Metcalfe","doi":"10.1080/14636778.2021.1997575","DOIUrl":null,"url":null,"abstract":"Genetics is increasingly defining how we understand health and disease, affecting for some, their understanding of inherited disease, and the meaning of medical genetic information. When interpretations of hereditary conditions are determined, partly, by one’s familial experience of heritable characteristics and partly by various other lived experiences, the meaning of genetics becomes highly personal. Through descriptions of stocks of knowledge, this paper describes findings from a qualitative study with a cohort of Black and Asian women with family and personal histories of cancer, about their interpretations of their genetic tests. We describe their interpretations as shaped by different experiences of biomedical practice as well as familial experiences of cancer and genetic testing; and we introduce a metaphor of “moving within a landscape,” to show how those interpretations were created and influenced by various sources of knowledge and life experiences.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"21 1","pages":"570 - 598"},"PeriodicalIF":1.3000,"publicationDate":"2021-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"1","resultStr":"{\"title\":\"“It didn’t mean anything” – moving within a landscape of knowledge to interpret genetics and genetic test results within familial cancer concerns\",\"authors\":\"Mavis Machirori, C. Patch, A. Metcalfe\",\"doi\":\"10.1080/14636778.2021.1997575\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Genetics is increasingly defining how we understand health and disease, affecting for some, their understanding of inherited disease, and the meaning of medical genetic information. When interpretations of hereditary conditions are determined, partly, by one’s familial experience of heritable characteristics and partly by various other lived experiences, the meaning of genetics becomes highly personal. Through descriptions of stocks of knowledge, this paper describes findings from a qualitative study with a cohort of Black and Asian women with family and personal histories of cancer, about their interpretations of their genetic tests. We describe their interpretations as shaped by different experiences of biomedical practice as well as familial experiences of cancer and genetic testing; and we introduce a metaphor of “moving within a landscape,” to show how those interpretations were created and influenced by various sources of knowledge and life experiences.\",\"PeriodicalId\":54724,\"journal\":{\"name\":\"New Genetics and Society\",\"volume\":\"21 1\",\"pages\":\"570 - 598\"},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2021-10-02\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"New Genetics and Society\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/14636778.2021.1997575\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"BIOTECHNOLOGY & APPLIED MICROBIOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"New Genetics and Society","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/14636778.2021.1997575","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"BIOTECHNOLOGY & APPLIED MICROBIOLOGY","Score":null,"Total":0}
“It didn’t mean anything” – moving within a landscape of knowledge to interpret genetics and genetic test results within familial cancer concerns
Genetics is increasingly defining how we understand health and disease, affecting for some, their understanding of inherited disease, and the meaning of medical genetic information. When interpretations of hereditary conditions are determined, partly, by one’s familial experience of heritable characteristics and partly by various other lived experiences, the meaning of genetics becomes highly personal. Through descriptions of stocks of knowledge, this paper describes findings from a qualitative study with a cohort of Black and Asian women with family and personal histories of cancer, about their interpretations of their genetic tests. We describe their interpretations as shaped by different experiences of biomedical practice as well as familial experiences of cancer and genetic testing; and we introduce a metaphor of “moving within a landscape,” to show how those interpretations were created and influenced by various sources of knowledge and life experiences.
期刊介绍:
New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which:
-Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences;
-Publishes theoretical and empirical contributions reflecting its multi-faceted development;
-Provides an international platform for critical reflection and debate;
-Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences.
New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.