Pub Date : 2021-07-02DOI: 10.1080/14699915.2021.1932451
Paul A. Martin, Ilke Turkmendag
Two major reports in the UK and USA have recently sanctioned as ethically acceptable genome editing of future generations for the treatment of serious rare inherited conditions. This marks an important turning point in the application of recombinant DNA techniques to humans. The central question this paper addresses is how did it became possible for human genetic engineering (HGE) of future generations to move from an illegitimate idea associated with eugenics in the 1980s to a concrete proposal sanctioned by scientists and bioethicists in 2020? The paper uses the concept of a regime of normativity to understand the co-evolution and mutual shaping of technology, imaginaries, norms and governance processes in debates about HGE in the USA and UK. It will be argued that interlinked discursive, institutional, political and technological changes have made proposals for the use of genome editing in the genetic engineering of future generations both “thinkable” and legitimate.
{"title":"Thinking the unthinkable: how did human germline genome editing become ethically acceptable?","authors":"Paul A. Martin, Ilke Turkmendag","doi":"10.1080/14699915.2021.1932451","DOIUrl":"https://doi.org/10.1080/14699915.2021.1932451","url":null,"abstract":"Two major reports in the UK and USA have recently sanctioned as ethically acceptable genome editing of future generations for the treatment of serious rare inherited conditions. This marks an important turning point in the application of recombinant DNA techniques to humans. The central question this paper addresses is how did it became possible for human genetic engineering (HGE) of future generations to move from an illegitimate idea associated with eugenics in the 1980s to a concrete proposal sanctioned by scientists and bioethicists in 2020? The paper uses the concept of a regime of normativity to understand the co-evolution and mutual shaping of technology, imaginaries, norms and governance processes in debates about HGE in the USA and UK. It will be argued that interlinked discursive, institutional, political and technological changes have made proposals for the use of genome editing in the genetic engineering of future generations both “thinkable” and legitimate.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"5 1","pages":"384 - 405"},"PeriodicalIF":1.8,"publicationDate":"2021-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84205138","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 : 2021-06-15DOI: 10.1080/14636778.2021.1941829
Y. Liaw, Ilke Turkmendag, K. Hollingsworth
Heritable genome editing (HGE) is prohibited by several international conventions for a number of reasons, including the protection of “genetic identity.” This article provides a conceptual analysis of the concept of “genetic identity” and offers normative reflections as to how it should be interpreted in the context of HGE. In particular, this article examines the purported right to retain “genetic identity” and the right-to-know “genetic identity” in order to explore the possible implications of these understandings on the debate concerning HGE on nuclear genome. We argue that a right to retain “genetic identity,” that is a right to an untampered genome, is unlikely to be plausibly established if the current international provisions are used as the basis for governing the use of HGE, due to both conceptual and practical ambiguities. We note that the international framework may be more nuanced if it directly engages with what it means to “preserve humanity.” Furthermore, drawing on the existing literature on identity formation, we argue that “genetic identity” based on a narrative-based understanding of identity should be given more weight in the context of HGE because it better safeguards the interests of the children born via the technology, should the technology be legalized for clinical use.
{"title":"Reinterpreting “genetic identity” in the regulatory and ethical context of heritable genome editing","authors":"Y. Liaw, Ilke Turkmendag, K. Hollingsworth","doi":"10.1080/14636778.2021.1941829","DOIUrl":"https://doi.org/10.1080/14636778.2021.1941829","url":null,"abstract":"Heritable genome editing (HGE) is prohibited by several international conventions for a number of reasons, including the protection of “genetic identity.” This article provides a conceptual analysis of the concept of “genetic identity” and offers normative reflections as to how it should be interpreted in the context of HGE. In particular, this article examines the purported right to retain “genetic identity” and the right-to-know “genetic identity” in order to explore the possible implications of these understandings on the debate concerning HGE on nuclear genome. We argue that a right to retain “genetic identity,” that is a right to an untampered genome, is unlikely to be plausibly established if the current international provisions are used as the basis for governing the use of HGE, due to both conceptual and practical ambiguities. We note that the international framework may be more nuanced if it directly engages with what it means to “preserve humanity.” Furthermore, drawing on the existing literature on identity formation, we argue that “genetic identity” based on a narrative-based understanding of identity should be given more weight in the context of HGE because it better safeguards the interests of the children born via the technology, should the technology be legalized for clinical use.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"23 1","pages":"406 - 424"},"PeriodicalIF":1.8,"publicationDate":"2021-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77914866","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 : 2021-05-29DOI: 10.1080/14636778.2021.1924647
T. Douglass
relating everything back to the QS movement – rather than more ubiquitous and quotidien self-tracking practices – seem a little forced in places. This is a minor criticism, however, and one that is equally true of many social scientists’ analyses of self-tracking. By drawing on an enormously rich set of literary and cultural texts spanning a large historical period, this volume makes clear that the concerns animating the QS movement have a long and fascinating genealogy. It will be of as much interest to social scientists and STS scholars as it is to literary and cultural studies specialists.
{"title":"Vaccine court – the law and politics of injury","authors":"T. Douglass","doi":"10.1080/14636778.2021.1924647","DOIUrl":"https://doi.org/10.1080/14636778.2021.1924647","url":null,"abstract":"relating everything back to the QS movement – rather than more ubiquitous and quotidien self-tracking practices – seem a little forced in places. This is a minor criticism, however, and one that is equally true of many social scientists’ analyses of self-tracking. By drawing on an enormously rich set of literary and cultural texts spanning a large historical period, this volume makes clear that the concerns animating the QS movement have a long and fascinating genealogy. It will be of as much interest to social scientists and STS scholars as it is to literary and cultural studies specialists.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"6 1","pages":"68 - 70"},"PeriodicalIF":1.8,"publicationDate":"2021-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86350006","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 : 2021-02-28DOI: 10.1080/14636778.2021.1889364
Joe Strong
GUYnecology is an ambitious work, interrogating the ‘missing’ science of men’s reproduction through uncovering the origins and reproductions of “non-knowledge” [p. 5]. Focused on the United States,...
{"title":"GUYnecology: the missing science of men’s reproductive health","authors":"Joe Strong","doi":"10.1080/14636778.2021.1889364","DOIUrl":"https://doi.org/10.1080/14636778.2021.1889364","url":null,"abstract":"GUYnecology is an ambitious work, interrogating the ‘missing’ science of men’s reproduction through uncovering the origins and reproductions of “non-knowledge” [p. 5]. Focused on the United States,...","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"961 1","pages":"622 - 624"},"PeriodicalIF":1.8,"publicationDate":"2021-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85624233","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 : 2021-02-28DOI: 10.1080/14636778.2021.1890007
D. Chavez-Yenter
Modern genomics have had numerous breakthroughs and progressions of their technologies being able to directly edit human DNA (Stein 2020), quantify inherited cancer risk via clinical genetic testin...
{"title":"Mapping humanity: how modern genetics is changing criminal justice, personalized medicine, and our identities","authors":"D. Chavez-Yenter","doi":"10.1080/14636778.2021.1890007","DOIUrl":"https://doi.org/10.1080/14636778.2021.1890007","url":null,"abstract":"Modern genomics have had numerous breakthroughs and progressions of their technologies being able to directly edit human DNA (Stein 2020), quantify inherited cancer risk via clinical genetic testin...","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"62 1","pages":"624 - 628"},"PeriodicalIF":1.8,"publicationDate":"2021-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90693939","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 : 2021-02-24DOI: 10.1080/14636778.2021.1889363
Stephen Molldrem
{"title":"Avian reservoirs: virus hunters and birdwatchers in Chinese sentinel posts","authors":"Stephen Molldrem","doi":"10.1080/14636778.2021.1889363","DOIUrl":"https://doi.org/10.1080/14636778.2021.1889363","url":null,"abstract":"","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"24 1","pages":"620 - 621"},"PeriodicalIF":1.8,"publicationDate":"2021-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80694693","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 : 2021-01-31DOI: 10.1080/14636778.2020.1868988
Daniel Strand, Anna Källén
In this article, we analyze how genetic genealogy reshapes popular notions of historical identity, as it facilitates a genetically informed understanding of ethnicity and ancestry. Drawing on interviews with Swedish, British and American individuals who have employed genetic ancestry tests (GATs) to prove ancestral connections to Vikings, we explore how the desire to “be a Viking” is articulated through a convergence of pre-existing discourses around Vikings and DNA. By combining signs from genetic science and popular depictions of Vikings, our interviewees create a new discourse of geneticized Viking identity. In this new discourse, socio-historically constructed ideas about Vikings are naturalized as the innate qualities of individuals who possess a certain genetic composition. Images of “the Viking” once created for political, cultural or commercial purposes are revived in new embodied forms and can start to circulate in new social contexts, where they, by association, appear to be confirmed by genetical science.
{"title":"I am a Viking! DNA, popular culture and the construction of geneticized identity","authors":"Daniel Strand, Anna Källén","doi":"10.1080/14636778.2020.1868988","DOIUrl":"https://doi.org/10.1080/14636778.2020.1868988","url":null,"abstract":"In this article, we analyze how genetic genealogy reshapes popular notions of historical identity, as it facilitates a genetically informed understanding of ethnicity and ancestry. Drawing on interviews with Swedish, British and American individuals who have employed genetic ancestry tests (GATs) to prove ancestral connections to Vikings, we explore how the desire to “be a Viking” is articulated through a convergence of pre-existing discourses around Vikings and DNA. By combining signs from genetic science and popular depictions of Vikings, our interviewees create a new discourse of geneticized Viking identity. In this new discourse, socio-historically constructed ideas about Vikings are naturalized as the innate qualities of individuals who possess a certain genetic composition. Images of “the Viking” once created for political, cultural or commercial purposes are revived in new embodied forms and can start to circulate in new social contexts, where they, by association, appear to be confirmed by genetical science.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"175 1","pages":"520 - 540"},"PeriodicalIF":1.8,"publicationDate":"2021-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76611947","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 : 2021-01-24DOI: 10.1080/14636778.2020.1868989
R. Richards
It is her analysis of how the latter process is instrumental in not only providing the Phase 1 industry with ready access to a pool of dedicated volunteers but also serves to generate data that presents pharmaceutical products in the best and safest way, that demonstrates how social inequalities are exploited for systematic profiteering by the pharmaceutical sector. This quote succinctly encapsulates the argument laid out in Jill A. Fisher's "Adverse Events": the Phase 1 clinical trial industry in the US not only relies upon but also exploits the social inequalities of the society in which it operates. [Extracted from the article] Copyright of New Genetics & Society is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
她分析了后一个过程如何发挥作用，不仅为第一阶段的制药行业提供了现成的志愿者资源，还有助于生成以最佳和最安全的方式呈现制药产品的数据，这表明了制药行业是如何利用社会不平等进行系统性暴利的。这句话简洁地概括了Jill A. Fisher在《不良事件》中提出的观点:美国的第一阶段临床试验行业不仅依赖而且利用了它所处社会的社会不平等。【摘自文章】《新遗传与社会》的版权是Routledge的财产，未经版权所有者的明确书面许可，其内容不得复制或通过电子邮件发送到多个网站或发布到listserv。但是，用户可以打印、下载或通过电子邮件发送文章供个人使用。这篇摘要可以删节。对副本的准确性不作任何保证。用户应参考资料的原始出版版本以获取完整摘要。(版权适用于所有摘要。)
{"title":"A Striking Look into the Invisible World of Phase 1 Clinical Trials: A Book Review of Jill Fisher's Adverse Events","authors":"R. Richards","doi":"10.1080/14636778.2020.1868989","DOIUrl":"https://doi.org/10.1080/14636778.2020.1868989","url":null,"abstract":"It is her analysis of how the latter process is instrumental in not only providing the Phase 1 industry with ready access to a pool of dedicated volunteers but also serves to generate data that presents pharmaceutical products in the best and safest way, that demonstrates how social inequalities are exploited for systematic profiteering by the pharmaceutical sector. This quote succinctly encapsulates the argument laid out in Jill A. Fisher's \"Adverse Events\": the Phase 1 clinical trial industry in the US not only relies upon but also exploits the social inequalities of the society in which it operates. [Extracted from the article] Copyright of New Genetics & Society is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"36 1","pages":"357 - 359"},"PeriodicalIF":1.8,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88072657","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 : 2021-01-20DOI: 10.1080/14636778.2020.1853514
J. Kuiper, P. Borry, D. Vears, I. van Hoyweghen
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.
{"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}
Pub Date : 2021-01-20DOI: 10.1080/14636778.2020.1868987
Nina Amelung, H. Machado
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.
{"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}
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