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The social shaping of a diagnosis in Next Generation Sequencing 下一代测序中诊断的社会塑造
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-20 DOI: 10.1080/14636778.2020.1853514
J. Kuiper, P. Borry, D. Vears, I. van Hoyweghen
{"title":"The social shaping of a diagnosis in Next Generation Sequencing","authors":"J. Kuiper, P. Borry, D. Vears, I. van Hoyweghen","doi":"10.1080/14636778.2020.1853514","DOIUrl":"https://doi.org/10.1080/14636778.2020.1853514","url":null,"abstract":"Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illness and science and technology studies, with a focus on the construction of diagnosis and the role of uncertainty in medicine, we analyze the existing corpus of literature on NGS diagnostic practices. We show how in this early implementation phase of NGS, in which standardization efforts are not yet solidified, the boundary struggles around diagnoses obtained through NGS are particularly visible. We discuss the different steps in the diagnosis shaping process and what it subsequently entails to give and a receive a diagnosis using NGS.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"40 1","pages":"425 - 448"},"PeriodicalIF":1.8,"publicationDate":"2021-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87532176","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Governing expectations of forensic innovations in society: the case of FDP in Germany 管理社会对法医创新的期望:以德国自由民主党为例
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-20 DOI: 10.1080/14636778.2020.1868987
Nina Amelung, H. Machado
{"title":"Governing expectations of forensic innovations in society: the case of FDP in Germany","authors":"Nina Amelung, H. Machado","doi":"10.1080/14636778.2020.1868987","DOIUrl":"https://doi.org/10.1080/14636778.2020.1868987","url":null,"abstract":"This article is about the governance of expectations of forensic DNA phenotyping (FDP) innovations in Germany used for the prediction of human externally visible traits such as eye, hair, and skin color, as well as biological age and biogeographic ancestry. In 2019, FDP technologies were regulated under the label “extended DNA analysis”. We focus on the expectations of members of the forensic genetics’ community in Germany, in anticipation and response to those of regulators who advocated for such technologies. Confronted with regulators’ expectations of omnipotent technologies and the optimistic promise that they will enhance public security, forensic geneticists responded with attempts to adjust such expectations, specifying limits and risks, along with a particular logic sorting matters of concern. We reflect on how forensic geneticists’ govern expectations through forms of distributed anticipatory governance, delimiting their obligations, and distributing accountability across the criminal justice system.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"56 1","pages":"498 - 519"},"PeriodicalIF":1.8,"publicationDate":"2021-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90161660","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities. 获取癌症靶向疗法：在主流癌症慈善机构之外的自我和集体宣传。
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-17 eCollection Date: 2021-01-01 DOI: 10.1080/14636778.2020.1868986
Anne Kerr, Choon Key Chekar, Julia Swallow, Emily Ross, Sarah Cunningham-Burley
{"title":"Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities.","authors":"Anne Kerr, Choon Key Chekar, Julia Swallow, Emily Ross, Sarah Cunningham-Burley","doi":"10.1080/14636778.2020.1868986","DOIUrl":"10.1080/14636778.2020.1868986","url":null,"abstract":"<p><p>As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.</p>","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"40 1","pages":"112-131"},"PeriodicalIF":1.8,"publicationDate":"2021-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8547735/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39578844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Assessing public opinions on the likelihood and permissibility of gene editing through construal level theory 通过解释水平理论评估公众对基因编辑的可能性和可容许性的意见
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-11 DOI: 10.1080/14636778.2020.1868985
Derek So, R. Sladek, Y. Joly
{"title":"Assessing public opinions on the likelihood and permissibility of gene editing through construal level theory","authors":"Derek So, R. Sladek, Y. Joly","doi":"10.1080/14636778.2020.1868985","DOIUrl":"https://doi.org/10.1080/14636778.2020.1868985","url":null,"abstract":"Anticipatory policy for gene editing requires assessing public opinion about this new technology. Although previous surveys have examined respondents’ views on the moral acceptability of various hypothetical uses of CRISPR, they have not considered whether these scenarios are perceived as plausible. Research in construal level theory indicates that participants make different moral judgments about scenarios seen as likely or near and those seen as unlikely or distant. Therefore, we surveyed a representative sample of 400 Americans and Canadians about both the likelihood and the permissibility of 23 commonly discussed uses of gene editing. Respondents with more knowledge of gene editing generally thought these applications would be more likely within the next 20 years. There was a strong positive relationship between the perceived likelihood and permissibility of most CRISPR applications. Our results suggest that ongoing public engagement efforts for gene editing could be improved by taking its perceived time-frames into account.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"78 1","pages":"473 - 497"},"PeriodicalIF":1.8,"publicationDate":"2021-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84055545","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Past-futures in experimental care: breast cancer and HIV medicine 实验护理的过去和未来:乳腺癌和艾滋病医学
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-06 DOI: 10.1080/14636778.2020.1861542
S. Day, William Viney, Jane Bruton, H. Ward
{"title":"Past-futures in experimental care: breast cancer and HIV medicine","authors":"S. Day, William Viney, Jane Bruton, H. Ward","doi":"10.1080/14636778.2020.1861542","DOIUrl":"https://doi.org/10.1080/14636778.2020.1861542","url":null,"abstract":"Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013–14) and, prompted by these earlier findings, an interview study in HIV services (2014–15). We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"14 1","pages":"449 - 472"},"PeriodicalIF":1.8,"publicationDate":"2021-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87128504","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 6
Local mutations: on the tentative beginnings of molecular oncology in Britain 1980–2000 局部突变:1980-2000年英国分子肿瘤学的初步研究
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-02 DOI: 10.1080/14636778.2021.1880887
S. Sturdy
{"title":"Local mutations: on the tentative beginnings of molecular oncology in Britain 1980–2000","authors":"S. Sturdy","doi":"10.1080/14636778.2021.1880887","DOIUrl":"https://doi.org/10.1080/14636778.2021.1880887","url":null,"abstract":"Popular and scientific accounts of the molecularisation of cancer typically attribute it to advances in laboratory science, particularly molecular geneticists. However, historical research has indicated that clinical expertise input was often vital for advancing such work. The present paper reinforces that view. Looking in detail at British research into the molecular genetics of familial cancers during the 1980s and 1990s, it shows that that research, too, depended on crucial input from family cancer clinics. Moreover, the development of clinical services for familial cancers was in turn shaped by the demands of contributing to molecular genetic research. The paper concludes that accounts of the molecularisation of cancer that suppose a one-way transfer of knowledge and practice from laboratory to clinic misrepresent the complex interactions that were involved in molecularising familial cancers, and that were informed by the particular local and national circumstances in which they took shape.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"459 1","pages":"7 - 25"},"PeriodicalIF":1.8,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80134976","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Organizing the precision clinic: arranging expertise, knowledge and technologies in cancer precision medicine clinical trials 组织精准临床:安排癌症精准医学临床试验的专家、知识和技术
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-02 DOI: 10.1080/14636778.2021.1882839
Stefano Crabu
{"title":"Organizing the precision clinic: arranging expertise, knowledge and technologies in cancer precision medicine clinical trials","authors":"Stefano Crabu","doi":"10.1080/14636778.2021.1882839","DOIUrl":"https://doi.org/10.1080/14636778.2021.1882839","url":null,"abstract":"The aim of this article, which draws on qualitative research focussed on working practices around a genomic-informed clinical trial, is to contribute to the ongoing debate on how care professionals and biomedical investigators mobilize collective expertise in and across organizational settings to shape so-called precise knowledge in cancer medicine. In so doing, the paper discusses three interrelated issues concerning the day-to-day practices of those doing what they are supposed to do to produce knowledge capable of enacting a precision oncology regimen: (i) situatedness and reshuffling of the professional jurisdiction (work always takes place in a texture of practices influencing how the work is understood and carried out); (ii) organizing technologies (mobilization of different kinds of medical technologies to produce knowledge when carrying out work practices as a vehicle for epistemic negotiation); and (iii) articulation work (the centrality of cooperative work to enact trial work).","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"115 1","pages":"58 - 72"},"PeriodicalIF":1.8,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89567788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Organizing precision oncology: introduction to the special issue 组织精密肿瘤学:特刊导论
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2021-01-02 DOI: 10.1080/14636778.2021.1883501
P. Bourret, P. Castel, H. Bergeron, A. Cambrosio
{"title":"Organizing precision oncology: introduction to the special issue","authors":"P. Bourret, P. Castel, H. Bergeron, A. Cambrosio","doi":"10.1080/14636778.2021.1883501","DOIUrl":"https://doi.org/10.1080/14636778.2021.1883501","url":null,"abstract":"This Special Issue (SI) on “Organizing precision oncology” features a number of articles initially presented at an International Workshop on “Organizational and epistemic innovation in precision cancer medicine” that took place in November 2018 in Paris. The Workshop was convened to mark the conclusion of a project supported by the French National Cancer Institute (INCa), entitled “Targets and trials: A sociological investigation of personalized cancer medicine in action (PERSONA).” The papers included in the SI have been revised and updated to reflect developments in the two years since the workshop was held. As hinted by the title of the Workshop, they investigate the implementation of precision oncology by focusing on the nexus between organizing and experimenting. The SI thus includes contributions that interface Science & Technology Studies (STS) and Organization Studies to analyze how clinicians and researchers deploy genomic platforms (Cambrosio et al. 2018) and the socio-technical and organizational arrangements that act as a condition of possibility for the performance of this new kind of clinical medicine. According to the 2020 Annual Report of the Personalized Medicine Coalition (PMC; http://www.personalizedmedicinecoalition.org) – an “international, multistakeholder, non-profit organization” for promoting the eponymous domain – the number of individualized medicines on the US market grew by 116% during the previous four years, and more than 75,000 genetic tests are available. In oncology, 61% of clinical trials now incorporate biomarkers compared to just 18% in 2000. In 2020, the FDA approved 27 precision oncology drugs, including 10 new molecular entities (NMEs) and 17 new indications of previously approved drugs, a 35% increase compared to the previous year (Staff Reporter 2021). These data point to a shift from the traditional focus on a tumor’s tissue of origin to the genetic basis of the disease, as highlighted, for instance, by the New Genetics and Society, 2021 Vol. 40, No. 1, 1–6, https://doi.org/10.1080/14636778.2021.1883501","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"30 1","pages":"1 - 6"},"PeriodicalIF":1.8,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88164952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 5
Beyond full jurisdiction: pathology and inter-professional relations in precision medicine 超越完全管辖权:病理和专业间的关系在精密医学
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2020-12-23 DOI: 10.1080/14636778.2020.1861543
H. Bergeron, P. Castel, Audrey Vézian
{"title":"Beyond full jurisdiction: pathology and inter-professional relations in precision medicine","authors":"H. Bergeron, P. Castel, Audrey Vézian","doi":"10.1080/14636778.2020.1861543","DOIUrl":"https://doi.org/10.1080/14636778.2020.1861543","url":null,"abstract":"The rise of precision medicine represents a challenge for pathology, which must now more closely link research and diagnostic and collaborate on new bases with other specialties. Our paper is based on the study of four French cancer centers invested in developing precision medicine. Molecular biology is particularly threatening for pathologists in settings where medical oncologists and biologists believe that the discipline is capable of presiding over if not altogether replacing morphology as the principal basis for diagnosis. However, we will show that the organizational arrangements for circulating tumor specimens and producing diagnoses, as well as the place occupied by pathologists in these arrangements, have varied from place to place and over time. These configurations are the result of preexisting arrangements and local negotiations among professionals, where the aim is rather to include and coordinate specialties within the production line rather than exclude them from the jurisdictional remit.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"141 1","pages":"42 - 57"},"PeriodicalIF":1.8,"publicationDate":"2020-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76181929","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 5
Virulent zones: animal disease and global health at China’s Pandemic epicenter 毒区:中国大流行中心的动物疾病和全球卫生
IF 1.8 4区 医学
New Genetics and Society Pub Date : 2020-12-23 DOI: 10.1080/14636778.2020.1861544
Giulia de Togni
{"title":"Virulent zones: animal disease and global health at China’s Pandemic epicenter","authors":"Giulia de Togni","doi":"10.1080/14636778.2020.1861544","DOIUrl":"https://doi.org/10.1080/14636778.2020.1861544","url":null,"abstract":"Virulent Zones challenges recent scientific and journalistic identifications of China as a pandemic epicenter, which have mapped a “geography of blame” where traditional ecologies are marked as “na...","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"13 1","pages":"355 - 357"},"PeriodicalIF":1.8,"publicationDate":"2020-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79026643","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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