Pub Date : 2021-01-17eCollection Date: 2021-01-01DOI: 10.1080/14636778.2020.1868986
Anne Kerr, Choon Key Chekar, Julia Swallow, Emily Ross, Sarah Cunningham-Burley
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.
{"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}
Pub Date : 2021-01-11DOI: 10.1080/14636778.2020.1868985
Derek So, R. Sladek, Y. Joly
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.
{"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}
Pub Date : 2021-01-06DOI: 10.1080/14636778.2020.1861542
S. Day, William Viney, Jane Bruton, H. Ward
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.
Cambrosio et al.(2018)。“扩展实验:肿瘤学研究与护理之间逐渐消失的界限”《新遗传学与社会》37(3):207-226)认为，当代肿瘤学的“实验性护理”涉及病人研究和护理的快速融合，并邀请进一步研究其他健康状况的发展。根据同一医院组的另外两项研究:同一癌症服务(2013-14)，以及基于这些早期发现的艾滋病毒服务访谈研究(2014-15)，我们提出了2018-2019年在城市临床环境中实验性乳腺癌护理的研究。我们发现，患者和工作人员期望通过治疗乳腺癌亚型获得更好的结果，但他们也希望有一种更好的一刀切的方法，类似于我们在访谈研究中探索的针对艾滋病毒的抗逆转录病毒治疗。我们得出的结论是，针对亚型疾病的靶向治疗的前景——被不同地描述为实验性护理、个性化、精确、分层和亚组医学——伴随着对单一、标准、有效方法的希望。
{"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}
Pub Date : 2021-01-02DOI: 10.1080/14636778.2021.1880887
S. Sturdy
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.
{"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}
Pub Date : 2021-01-02DOI: 10.1080/14636778.2021.1882839
Stefano Crabu
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).
{"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}
Pub Date : 2021-01-02DOI: 10.1080/14636778.2021.1883501
P. Bourret, P. Castel, H. Bergeron, A. Cambrosio
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
本期关于“组织精准肿瘤学”的特刊(SI)刊载了2018年11月在巴黎举行的“精准癌症医学的组织和认知创新”国际研讨会上首次发表的一些文章。研讨会的召开是为了纪念法国国家癌症研究所(INCa)支持的一个项目的结束，该项目名为“目标和试验:个体化癌症药物的社会学调查”(PERSONA)。自研讨会举办以来，已修订和更新了SI中包含的文件，以反映两年来的发展情况。正如研讨会的标题所暗示的那样，他们通过关注组织和实验之间的联系来研究精确肿瘤学的实施。因此，SI包括将科学与技术研究(STS)和组织研究相结合的贡献，以分析临床医生和研究人员如何部署基因组平台(Cambrosio et al. 2018)，以及作为这种新型临床医学表现可能性条件的社会技术和组织安排。根据个性化医疗联盟(PMC;http://www.personalizedmedicinecoalition.org)——一个促进同名领域的“国际、多方利益相关者、非营利组织”——在过去的四年里，美国市场上的个体化药物数量增长了116%，有超过75000种基因测试可用。在肿瘤学领域，61%的临床试验纳入了生物标志物，而2000年这一比例仅为18%。2020年，FDA批准了27种精准肿瘤药物，其中包括10种新分子实体(NMEs)和17种先前批准药物的新适应症，与上一年相比增加了35% (Staff Reporter 2021)。这些数据表明，传统上对肿瘤起源组织的关注转向了疾病的遗传基础，如《新遗传学与社会》(New Genetics and Society) 2021年第40卷第1 - 6期(https://doi.org/10.1080/14636778.2021.1883501)所强调的那样
{"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}
Pub Date : 2020-12-23DOI: 10.1080/14636778.2020.1861543
H. Bergeron, P. Castel, Audrey Vézian
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.
{"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}
Pub Date : 2020-12-23DOI: 10.1080/14636778.2020.1861544
Giulia de Togni
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...
{"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}
Pub Date : 2020-12-20DOI: 10.1080/14636778.2020.1853513
Niccoló Tempini
Key to precision medicine is the development of expert database projects that gather data, integrate them in the pre-existing database, and publish the product of their processing for others to make use of. Increasingly, it is required that data infrastructure managers and curators pursue and lead research projects on the data so as to learn about new ways data could be used or information that could be potentially generated from them. I call these efforts “data curation-research” and use the case study of COSMIC, the Catalogue of Somatic Mutations in Cancer, to analyze the contextual factors shaping the science of data curation-research. I build on March’s organizational learning categories of exploitation and exploration to place these factors within a theory of organizational change and innovation, and contribute to a richer picture of the social drivers of cancer genomics.
{"title":"Data curation-research: practices of data standardization and exploration in a precision medicine database","authors":"Niccoló Tempini","doi":"10.1080/14636778.2020.1853513","DOIUrl":"https://doi.org/10.1080/14636778.2020.1853513","url":null,"abstract":"Key to precision medicine is the development of expert database projects that gather data, integrate them in the pre-existing database, and publish the product of their processing for others to make use of. Increasingly, it is required that data infrastructure managers and curators pursue and lead research projects on the data so as to learn about new ways data could be used or information that could be potentially generated from them. I call these efforts “data curation-research” and use the case study of COSMIC, the Catalogue of Somatic Mutations in Cancer, to analyze the contextual factors shaping the science of data curation-research. I build on March’s organizational learning categories of exploitation and exploration to place these factors within a theory of organizational change and innovation, and contribute to a richer picture of the social drivers of cancer genomics.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"36 1","pages":"73 - 94"},"PeriodicalIF":1.8,"publicationDate":"2020-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87536587","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}
Pub Date : 2020-12-13DOI: 10.1080/14636778.2020.1853511
Luca Chiapperino, Nils Graber, F. Panese
This paper details how the architectural features of a new cancer research center (henceforth “NCRC”) contribute to the alignment of different institutional settings, epistemic approaches and communities of practices around precision immuno-oncology. First, we show how the building’s designed emplacement produces an organizational change directed at accelerating the traffic of discoveries and the collaborations across basic research and clinical practice. Second, we focus on the contribution of the NCRC’s internal design (i.e. its laboratory spaces) to a larger spatial, epistemic and social (re)organization of (local) experimental practices of patient-tailored immunotherapies development. Our focus on the articulations of spaces, experimental systems and epistemic socialities allows us to characterize our observations of the NCRC as epistemic dwelling. This notion, we maintain, highlights how the NCRC goes beyond the physical networking of neighboring experimental practices and rather encompasses a generative process of co-habitation of a novel socio-spatial-technical unit of scientific activity.
{"title":"Epistemic dwelling: precision immuno-oncology by design","authors":"Luca Chiapperino, Nils Graber, F. Panese","doi":"10.1080/14636778.2020.1853511","DOIUrl":"https://doi.org/10.1080/14636778.2020.1853511","url":null,"abstract":"This paper details how the architectural features of a new cancer research center (henceforth “NCRC”) contribute to the alignment of different institutional settings, epistemic approaches and communities of practices around precision immuno-oncology. First, we show how the building’s designed emplacement produces an organizational change directed at accelerating the traffic of discoveries and the collaborations across basic research and clinical practice. Second, we focus on the contribution of the NCRC’s internal design (i.e. its laboratory spaces) to a larger spatial, epistemic and social (re)organization of (local) experimental practices of patient-tailored immunotherapies development. Our focus on the articulations of spaces, experimental systems and epistemic socialities allows us to characterize our observations of the NCRC as epistemic dwelling. This notion, we maintain, highlights how the NCRC goes beyond the physical networking of neighboring experimental practices and rather encompasses a generative process of co-habitation of a novel socio-spatial-technical unit of scientific activity.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"47 1","pages":"26 - 41"},"PeriodicalIF":1.8,"publicationDate":"2020-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78909702","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}
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