Pub Date : 2022-12-20DOI: 10.1080/14636778.2022.2155124
R. Dimond, Jamie Lewis, Alice Sumner
The 2018 announcement that the world ’ s fi rst babies had been born following gene editing was unexpected and unanticipated. In this article, we focus on the reaction to the announcement and explore how this revealed implicit and explicit assumptions about the role and responsibilities of scientists and scienti fi c standards. Through analysis of media coverage and public commentary about the birth of the “ world ’ s fi rst, ” we identify how the event was constructed as a breach of scienti fi c norms. We begin by identifying the use of an “ if true ” narrative, which contributed to the meanings of the technology and the births following the initial announcement. We consider two dimensions to the concept of “ breach, ” as an individual act of transgression and as a rupture of community norms. Finally, we consider the work of the broader scienti fi c community in repairing the damage and their attempts to strengthen its boundaries to prevent future transgressions.
{"title":"The unexpected and unanticipated announcement of the “world’s first” gene edited babies: breaching, repairing and strengthening community boundaries","authors":"R. Dimond, Jamie Lewis, Alice Sumner","doi":"10.1080/14636778.2022.2155124","DOIUrl":"https://doi.org/10.1080/14636778.2022.2155124","url":null,"abstract":"The 2018 announcement that the world ’ s fi rst babies had been born following gene editing was unexpected and unanticipated. In this article, we focus on the reaction to the announcement and explore how this revealed implicit and explicit assumptions about the role and responsibilities of scientists and scienti fi c standards. Through analysis of media coverage and public commentary about the birth of the “ world ’ s fi rst, ” we identify how the event was constructed as a breach of scienti fi c norms. We begin by identifying the use of an “ if true ” narrative, which contributed to the meanings of the technology and the births following the initial announcement. We consider two dimensions to the concept of “ breach, ” as an individual act of transgression and as a rupture of community norms. Finally, we consider the work of the broader scienti fi c community in repairing the damage and their attempts to strengthen its boundaries to prevent future transgressions.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"37 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2022-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79833739","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 : 2022-10-02DOI: 10.1080/14636778.2022.2137121
Karen Ann Blom
History can be described as a story, or narrative reporting on past events to create meaning and explanation for the present/future. Narratives of genetic history are presented in the genetic ancestry testing (GAT) results specifically maps, percentages, and related information to consumers expecting “answers” related to identity and belonging. Engaging in thematic narrative analysis I ask how GAT results’ narratives use ethnicity/race/nationality to categorize sameness/difference and what these narratives inform about group boundaries through the comparison of online result materials received from four GAT companies: 23andMe, Ancestry, MyHeritage, and FamilyTreeDNA. These results are presented as an in-between space where bio-historic-cultural contents are negotiated with previous knowledge/experiences. This study found results narrate dichotomies of “self” and others, individual and collective, personal and private, and the present and the historical, and serves to highlight problematic perceptions of genetics history as an essential/unchanging product, reducing and ignoring diversity within and moving between groups.
{"title":"Navigating narratives of genetic categorization at the frayed edges of identity","authors":"Karen Ann Blom","doi":"10.1080/14636778.2022.2137121","DOIUrl":"https://doi.org/10.1080/14636778.2022.2137121","url":null,"abstract":"History can be described as a story, or narrative reporting on past events to create meaning and explanation for the present/future. Narratives of genetic history are presented in the genetic ancestry testing (GAT) results specifically maps, percentages, and related information to consumers expecting “answers” related to identity and belonging. Engaging in thematic narrative analysis I ask how GAT results’ narratives use ethnicity/race/nationality to categorize sameness/difference and what these narratives inform about group boundaries through the comparison of online result materials received from four GAT companies: 23andMe, Ancestry, MyHeritage, and FamilyTreeDNA. These results are presented as an in-between space where bio-historic-cultural contents are negotiated with previous knowledge/experiences. This study found results narrate dichotomies of “self” and others, individual and collective, personal and private, and the present and the historical, and serves to highlight problematic perceptions of genetics history as an essential/unchanging product, reducing and ignoring diversity within and moving between groups.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"27 1","pages":"334 - 357"},"PeriodicalIF":1.8,"publicationDate":"2022-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80962145","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 : 2022-10-02DOI: 10.1080/14636778.2022.2134101
François Romijn
Drawing on an ethnography of Wisconsin-based descendants of Belgian immigrants, this article explores social dynamics relating to ways lay users of genomic ancestry testing (GAT) understand genomic ancestry and how their understanding raises questions concerning the construction of their identities. The study focuses on a group that presents interesting features for which the existing literature is sparse (i.e. a rather secure Belgian ancestry/present identity, the absence of a clear ascription to the category “Belgium/Belgian” from the tests, and a biological connectedness in the Belgian community). GAT is approached as a socio-cultural object contextualized at a local level. The analysis involves specifying the discursive practices by which individuals entangle with this knowledge, following a two-pronged perspective derived from the nature of the information received by users, which is both individuating/deindividuating and deterministic/probabilistic. The paper, therefore, provides new insights into the manners in which social actors trigger their responsibility in response to genomic ancestry, and this questions the users’ sense of identity.
{"title":"“We are all cousins.” Belgian ancestry and genomic testing in a close-knit community in Northeastern Wisconsin","authors":"François Romijn","doi":"10.1080/14636778.2022.2134101","DOIUrl":"https://doi.org/10.1080/14636778.2022.2134101","url":null,"abstract":"Drawing on an ethnography of Wisconsin-based descendants of Belgian immigrants, this article explores social dynamics relating to ways lay users of genomic ancestry testing (GAT) understand genomic ancestry and how their understanding raises questions concerning the construction of their identities. The study focuses on a group that presents interesting features for which the existing literature is sparse (i.e. a rather secure Belgian ancestry/present identity, the absence of a clear ascription to the category “Belgium/Belgian” from the tests, and a biological connectedness in the Belgian community). GAT is approached as a socio-cultural object contextualized at a local level. The analysis involves specifying the discursive practices by which individuals entangle with this knowledge, following a two-pronged perspective derived from the nature of the information received by users, which is both individuating/deindividuating and deterministic/probabilistic. The paper, therefore, provides new insights into the manners in which social actors trigger their responsibility in response to genomic ancestry, and this questions the users’ sense of identity.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"73 1","pages":"312 - 333"},"PeriodicalIF":1.8,"publicationDate":"2022-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75977911","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 : 2022-10-02DOI: 10.1080/14636778.2022.2142108
M. Morrison
{"title":"The matrix of stem cell research: an approach to rethinking science in society","authors":"M. Morrison","doi":"10.1080/14636778.2022.2142108","DOIUrl":"https://doi.org/10.1080/14636778.2022.2142108","url":null,"abstract":"","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"9 1","pages":"358 - 361"},"PeriodicalIF":1.8,"publicationDate":"2022-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80797830","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 : 2022-09-15DOI: 10.1080/14636778.2022.2115350
Wan-Ju Lee, Y. Tsai
Based on the concept of “governance through scientism”, this article aims to reveal the tacit practices of the institutional culture of scientism among Taiwan Biobank’s elite scientists, whose imaginaries have shaped the dominance of a deficit model of the public in dealing with public controversy and establishing regulatory mechanisms. Examining three periods of ELSI controversies from 2000 to 2021, we identify three types of scientific imaginaries of publics, namely the silent public (2000–2004), the anti-science public (2005–2010), and the EGC as the lawful public supervisory body (2010–2021). In 2010, the Human Biobank Management Act (HBMA) was passed in Taiwan as a solution to public controversy and as a strategy to bypass public engagement. However, the overemphasis on formative legislation caused actors to overlook the processual approach in which ongoing critical reflections are required for the changing operations of TBB
{"title":"Governance through scientism: Taiwan Biobank and public controversy","authors":"Wan-Ju Lee, Y. Tsai","doi":"10.1080/14636778.2022.2115350","DOIUrl":"https://doi.org/10.1080/14636778.2022.2115350","url":null,"abstract":"Based on the concept of “governance through scientism”, this article aims to reveal the tacit practices of the institutional culture of scientism among Taiwan Biobank’s elite scientists, whose imaginaries have shaped the dominance of a deficit model of the public in dealing with public controversy and establishing regulatory mechanisms. Examining three periods of ELSI controversies from 2000 to 2021, we identify three types of scientific imaginaries of publics, namely the silent public (2000–2004), the anti-science public (2005–2010), and the EGC as the lawful public supervisory body (2010–2021). In 2010, the Human Biobank Management Act (HBMA) was passed in Taiwan as a solution to public controversy and as a strategy to bypass public engagement. However, the overemphasis on formative legislation caused actors to overlook the processual approach in which ongoing critical reflections are required for the changing operations of TBB","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"74 6 1","pages":"293 - 311"},"PeriodicalIF":1.8,"publicationDate":"2022-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83433206","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 : 2022-07-03DOI: 10.1080/14636778.2022.2115351
R. Rapp, S. Outram
… sociological research approaches carve out a space for complicating our engagement with proliferating and expanding gene
社会学研究方法开辟了一个空间，使我们对基因增殖和扩展的研究更加复杂
{"title":"Building the airplane while flying it: tracking the transformation of novel sequencing practices into clinical services","authors":"R. Rapp, S. Outram","doi":"10.1080/14636778.2022.2115351","DOIUrl":"https://doi.org/10.1080/14636778.2022.2115351","url":null,"abstract":"… sociological research approaches carve out a space for complicating our engagement with proliferating and expanding gene","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"235 1","pages":"284 - 291"},"PeriodicalIF":1.8,"publicationDate":"2022-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76296416","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 : 2022-07-03DOI: 10.1080/14636778.2022.2115352
J. Reardon
The papers gathered in this special issue offer us an important, empirically rich glimpse at on-the-ground efforts in the United States to realize the promise of genomics in the clinic. What they make amply clear is that two decades after the completion of the Human Genome Project, for most the benefits of the much-touted precision medicine remain – at best – uncertain. Sara Ackerman, for example, reports on a molecular oncology program at a US medical center where “[f]or most patients, genetic testing produces information that is of uncertain clinical significance and does not lead to changes in treatment.” Jennifer James and Galen Joseph detail the concerns of clinicians and investigators who worry that a genomics-informed breast cancer prediction algorithm will produce “personalized” screening recommendations that may not be the best for an individual. Kate Weatherford Darling et al. describe clinicians who gain a renewed sense of purpose from the introduction of experimental genomic testing to rural Maine at the same time that they wonder if they are building a system that will ultimately “contribute to unsustainable patterns of over-testing in healthcare.” Even when genetic data can clearly help – as Deborah Gordon and Barbara Koenig report in the case of pancreatic cancer – people are denied benefits by legal systems that prevent the flow of data to family members. Yet despite the lack of few tangible benefits, it is striking that in each of these articles we meet clinicians, investigators, patients and family members who struggle mightily in the present to make good on the promise of genomics and precision medicine. They do so within systems that work against them in fundamental ways: introducing time-consuming and soul-draining layers of bureaucracy; New Genetics and Society, 2022 Vol. 41, No. 3, 187–195, https://doi.org/10.1080/14636778.2022.2115352
{"title":"The pathos of precision","authors":"J. Reardon","doi":"10.1080/14636778.2022.2115352","DOIUrl":"https://doi.org/10.1080/14636778.2022.2115352","url":null,"abstract":"The papers gathered in this special issue offer us an important, empirically rich glimpse at on-the-ground efforts in the United States to realize the promise of genomics in the clinic. What they make amply clear is that two decades after the completion of the Human Genome Project, for most the benefits of the much-touted precision medicine remain – at best – uncertain. Sara Ackerman, for example, reports on a molecular oncology program at a US medical center where “[f]or most patients, genetic testing produces information that is of uncertain clinical significance and does not lead to changes in treatment.” Jennifer James and Galen Joseph detail the concerns of clinicians and investigators who worry that a genomics-informed breast cancer prediction algorithm will produce “personalized” screening recommendations that may not be the best for an individual. Kate Weatherford Darling et al. describe clinicians who gain a renewed sense of purpose from the introduction of experimental genomic testing to rural Maine at the same time that they wonder if they are building a system that will ultimately “contribute to unsustainable patterns of over-testing in healthcare.” Even when genetic data can clearly help – as Deborah Gordon and Barbara Koenig report in the case of pancreatic cancer – people are denied benefits by legal systems that prevent the flow of data to family members. Yet despite the lack of few tangible benefits, it is striking that in each of these articles we meet clinicians, investigators, patients and family members who struggle mightily in the present to make good on the promise of genomics and precision medicine. They do so within systems that work against them in fundamental ways: introducing time-consuming and soul-draining layers of bureaucracy; New Genetics and Society, 2022 Vol. 41, No. 3, 187–195, https://doi.org/10.1080/14636778.2022.2115352","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"69 1","pages":"187 - 195"},"PeriodicalIF":1.8,"publicationDate":"2022-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81355425","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}
The digital pdf version of Chapter 12 is available Open Access under CC-BY licence. This transdisciplinary collection engages with key issues of social exclusion, inequality, power and knowledge in the context of COVID-19. Putting the spotlight on the lived experiences of marginalised groups from around the world, the authors reframe ongoing debates around the pandemic and highlight how they might lead to new ways of thinking and acting in relation to public policy, culture and the economy. .
{"title":"Being Human During COVID-19","authors":"Robyn Rowe","doi":"10.47674/9781529223149","DOIUrl":"https://doi.org/10.47674/9781529223149","url":null,"abstract":"The digital pdf version of Chapter 12 is available Open Access under CC-BY licence. This transdisciplinary collection engages with key issues of social exclusion, inequality, power and knowledge in the context of COVID-19. Putting the spotlight on the lived experiences of marginalised groups from around the world, the authors reframe ongoing debates around the pandemic and highlight how they might lead to new ways of thinking and acting in relation to public policy, culture and the economy. .","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"44 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2022-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87542657","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 : 2022-04-03DOI: 10.1080/14636778.2022.2091533
C. Clark, F. Boardman
Whole genome sequencing (WGS) is being considered as a tool to deliver newborn screening (NBS) internationally. Its use would dramatically increase the number of genetic variants identified, presenting a host of ethical, social, and practical considerations. A scoping review was conducted to examine the acceptability of WGS-NBS among parents, the public, and health professionals. Parent/public groups were enthusiastic about WGS-NBS, holding panoramic views of current/future benefits, incorporating family and wider society. While actionable early-onset findings were prioritized, non-actionable and uncertain results were still viewed as empowering. Conversely, professionals preferred selective results disclosure, prioritized by clinical need. They emphasized the need for meaningful consent and protection of the child’s autonomy. All groups outlined the importance of properly considered implementation (e.g. resources, governance) to minimize harms and prevent a reduction in NBS participation. As genomic medicine integrates into healthcare, divergent conceptualizations of “harms” and “benefits” across social groups must be considered.
{"title":"Expanding the notion of “benefit”: comparing public, parent, and professional attitudes towards whole genome sequencing in newborns","authors":"C. Clark, F. Boardman","doi":"10.1080/14636778.2022.2091533","DOIUrl":"https://doi.org/10.1080/14636778.2022.2091533","url":null,"abstract":"Whole genome sequencing (WGS) is being considered as a tool to deliver newborn screening (NBS) internationally. Its use would dramatically increase the number of genetic variants identified, presenting a host of ethical, social, and practical considerations. A scoping review was conducted to examine the acceptability of WGS-NBS among parents, the public, and health professionals. Parent/public groups were enthusiastic about WGS-NBS, holding panoramic views of current/future benefits, incorporating family and wider society. While actionable early-onset findings were prioritized, non-actionable and uncertain results were still viewed as empowering. Conversely, professionals preferred selective results disclosure, prioritized by clinical need. They emphasized the need for meaningful consent and protection of the child’s autonomy. All groups outlined the importance of properly considered implementation (e.g. resources, governance) to minimize harms and prevent a reduction in NBS participation. As genomic medicine integrates into healthcare, divergent conceptualizations of “harms” and “benefits” across social groups must be considered.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"8 1","pages":"96 - 115"},"PeriodicalIF":1.8,"publicationDate":"2022-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78892933","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 : 2022-04-03DOI: 10.1080/14636778.2022.2063826
Zheng Yang
In the digital media environment, public engagement with science around controversial scientific topics such as genetically modified organisms (GMOs) has greatly expanded. But the public's role as science communicators in such engagement has been virtually ignored. Through an online ethnography of the discussion of GMOs on Zhihu, the biggest Chinese knowledge-sharing network, this study identifies a new group: citizen science communicators involved in online science communication. The emergence and popularity of this new group brings public engagement with science to a new stage – public engagement with science communication – and changes the role of the public in science communication from audiences to communicators. The development of digital platforms and the revolution of the understanding of science communication all contribute to the emergence and popularity of this group in the Chinese digital environment.
{"title":"The new stage of public engagement with science in the digital media environment: citizen science communicators in the discussion of GMOs on Zhihu","authors":"Zheng Yang","doi":"10.1080/14636778.2022.2063826","DOIUrl":"https://doi.org/10.1080/14636778.2022.2063826","url":null,"abstract":"In the digital media environment, public engagement with science around controversial scientific topics such as genetically modified organisms (GMOs) has greatly expanded. But the public's role as science communicators in such engagement has been virtually ignored. Through an online ethnography of the discussion of GMOs on Zhihu, the biggest Chinese knowledge-sharing network, this study identifies a new group: citizen science communicators involved in online science communication. The emergence and popularity of this new group brings public engagement with science to a new stage – public engagement with science communication – and changes the role of the public in science communication from audiences to communicators. The development of digital platforms and the revolution of the understanding of science communication all contribute to the emergence and popularity of this group in the Chinese digital environment.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"11 1","pages":"116 - 135"},"PeriodicalIF":1.8,"publicationDate":"2022-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87970494","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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