Pub Date : 2020-12-08DOI: 10.1080/14636778.2020.1853515
Rafaela Granja
Long-range familial searches in recreational DNA databases have been the subject of intense interest since the high-profile case of the Golden State Killer. This technique has raised considerable media attention and has sparked immediate criticism from forensic geneticists and other professionals, regulators, policy advisors, and ethicists. However, the literature on this topic does not capture the complexities resulting from the commodification of genetic data and the marketization of science. In this article, I explore how long-range familial searches conducted in recreational DNA databases reframe the trajectory of forensic genetics. Arguing that the advent and consolidation of long-range familial searches in recreational DNA databases represent the fourth wave of forensic genetics, I detail its implications, namely, the expansion of affected populations, the participatory turn, and the co-production of biovalue.
{"title":"Long-range familial searches in recreational DNA databases: expansion of affected populations, the participatory turn, and the co-production of biovalue","authors":"Rafaela Granja","doi":"10.1080/14636778.2020.1853515","DOIUrl":"https://doi.org/10.1080/14636778.2020.1853515","url":null,"abstract":"Long-range familial searches in recreational DNA databases have been the subject of intense interest since the high-profile case of the Golden State Killer. This technique has raised considerable media attention and has sparked immediate criticism from forensic geneticists and other professionals, regulators, policy advisors, and ethicists. However, the literature on this topic does not capture the complexities resulting from the commodification of genetic data and the marketization of science. In this article, I explore how long-range familial searches conducted in recreational DNA databases reframe the trajectory of forensic genetics. Arguing that the advent and consolidation of long-range familial searches in recreational DNA databases represent the fourth wave of forensic genetics, I detail its implications, namely, the expansion of affected populations, the participatory turn, and the co-production of biovalue.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"47 1","pages":"331 - 352"},"PeriodicalIF":1.8,"publicationDate":"2020-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86491923","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 : 2020-12-08DOI: 10.1080/14636778.2020.1853512
A. Cambrosio, Jonah Campbell, P. Bourret
This article partakes in a number of recent attempts to map the reconfiguration of clinical work as part of the deployment of precision oncology. We focus on the platforms, in particular Molecular Tumor Boards, that act as a condition of possibility for implementing innovative experimental interventions, and which are part of the emergence, beyond the traditional confines of diagnosis, of a data “ecosystem” geared towards increasing patient access to drugs matched to their genomic profile. MTBs are a key component of this singularization process, and their activities are central to the looping mechanisms that connect the diagnosis of individual patients to the revision of diagnostic categories. These categories are no longer “merely” diagnostic but operate as predictive guides to therapy.
{"title":"Beyond nosology? Molecular tumor boards, singularization, and the conflation of diagnosis and therapy","authors":"A. Cambrosio, Jonah Campbell, P. Bourret","doi":"10.1080/14636778.2020.1853512","DOIUrl":"https://doi.org/10.1080/14636778.2020.1853512","url":null,"abstract":"This article partakes in a number of recent attempts to map the reconfiguration of clinical work as part of the deployment of precision oncology. We focus on the platforms, in particular Molecular Tumor Boards, that act as a condition of possibility for implementing innovative experimental interventions, and which are part of the emergence, beyond the traditional confines of diagnosis, of a data “ecosystem” geared towards increasing patient access to drugs matched to their genomic profile. MTBs are a key component of this singularization process, and their activities are central to the looping mechanisms that connect the diagnosis of individual patients to the revision of diagnostic categories. These categories are no longer “merely” diagnostic but operate as predictive guides to therapy.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"44 1","pages":"95 - 111"},"PeriodicalIF":1.8,"publicationDate":"2020-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78569358","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 : 2020-11-25DOI: 10.1080/14636778.2020.1843148
Kai Wang, Xiaobai Shen, Robin Williams
The increasing importance of computational techniques in post-genomic life science research calls for new forms and combinations of expertise that cut across established disciplinary boundaries between computing and biology. These are most marked in large scale gene sequencing facilities. Here new ways of organising knowledge production, drawing on industrial models, have been perceived as pursuing efficiency and control to the potential detriment of academic autonomy and scientific quality. We explore how these issues are played out in the case of BGI (Beijing Genomics Institute prior to 2008). BGI (in Pinyin, Hua Da Jiyin– Big China Genome) is today the world’s largest centre for gene sequencing research. Semi-detached from traditional academic institutions, BGI has developed distinctive models for organising research and for developing expertise, informed by practices in US Information Technology and Life Science Laboratories, that differ from existing models of interdisciplinary research in academic institutions.
计算技术在后基因组生命科学研究中的重要性日益增加，需要新的形式和专业知识的组合，以跨越计算和生物学之间已建立的学科界限。这些在大规模基因测序设施中最为明显。在这里，利用工业模式组织知识生产的新方法被认为是追求效率和控制，而对学术自治和科学质量造成潜在损害。我们探讨了这些问题是如何在华大基因(2008年之前的北京基因组研究所)的案例中发挥作用的。华大基因(汉语拼音，Hua Da Jiyin - Big China Genome)是当今世界最大的基因测序研究中心。华大基因半脱离于传统学术机构，在美国信息技术和生命科学实验室的实践指导下，开发了独特的组织研究和开发专业知识的模式，与学术机构现有的跨学科研究模式不同。
{"title":"Sequencing BGI: the evolution of expertise and research organisation in the world’s leading gene sequencing facility","authors":"Kai Wang, Xiaobai Shen, Robin Williams","doi":"10.1080/14636778.2020.1843148","DOIUrl":"https://doi.org/10.1080/14636778.2020.1843148","url":null,"abstract":"The increasing importance of computational techniques in post-genomic life science research calls for new forms and combinations of expertise that cut across established disciplinary boundaries between computing and biology. These are most marked in large scale gene sequencing facilities. Here new ways of organising knowledge production, drawing on industrial models, have been perceived as pursuing efficiency and control to the potential detriment of academic autonomy and scientific quality. We explore how these issues are played out in the case of BGI (Beijing Genomics Institute prior to 2008). BGI (in Pinyin, Hua Da Jiyin– Big China Genome) is today the world’s largest centre for gene sequencing research. Semi-detached from traditional academic institutions, BGI has developed distinctive models for organising research and for developing expertise, informed by practices in US Information Technology and Life Science Laboratories, that differ from existing models of interdisciplinary research in academic institutions.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"4 1","pages":"305 - 330"},"PeriodicalIF":1.8,"publicationDate":"2020-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82670737","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 : 2020-11-18DOI: 10.1080/14636778.2020.1843149
Gabrielle Samuel, D. Kennett
Genetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative genetic genealogy (IGG) technique holds much promise, its use – particularly during serious criminal investigations – has sparked a range of social and ethical concerns. Receiving consent for IGG from genetic genealogy database users has been argued as a way to address such concerns. While critiques of the importance of consent are well documented in the biomedical and forensic biobanking literature, this has not been explored for IGG. We sought to address this gap by exploring the views of UK stakeholders. Our research question was: what are UK public and professional stakeholders’ views about the importance of the consent process for IGG when used for serious criminal cases? The methodological approach was interview-based and exploratory. Our analysis identified that all interviewees stressed the importance of consent, though interviewees’ narratives pointed to inadequacies of individual-based consent as an ethical panacea for IGG.
{"title":"Problematizing consent: searching genetic genealogy databases for law enforcement purposes","authors":"Gabrielle Samuel, D. Kennett","doi":"10.1080/14636778.2020.1843149","DOIUrl":"https://doi.org/10.1080/14636778.2020.1843149","url":null,"abstract":"Genetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative genetic genealogy (IGG) technique holds much promise, its use – particularly during serious criminal investigations – has sparked a range of social and ethical concerns. Receiving consent for IGG from genetic genealogy database users has been argued as a way to address such concerns. While critiques of the importance of consent are well documented in the biomedical and forensic biobanking literature, this has not been explored for IGG. We sought to address this gap by exploring the views of UK stakeholders. Our research question was: what are UK public and professional stakeholders’ views about the importance of the consent process for IGG when used for serious criminal cases? The methodological approach was interview-based and exploratory. Our analysis identified that all interviewees stressed the importance of consent, though interviewees’ narratives pointed to inadequacies of individual-based consent as an ethical panacea for IGG.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"21 1","pages":"284 - 304"},"PeriodicalIF":1.8,"publicationDate":"2020-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83221772","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 : 2020-10-12DOI: 10.1080/14636778.2020.1829463
A. Ahuriri-Driscoll, Juan Tauri, J. Veth
DNA profiling is just one of many tools available to police in a criminal investigation. However, unlike any other criminal investigative tool, DNA profiling has captured the public imagination. Its portrayal in popular fiction has given rise to the “CSI effect”, whereby the weight and credibility of science, combined with the predictive potential of DNA, produce an aura of infallibility and certainty only amplified by creative license. Genetic material holds particular significance for Indigenous peoples, establishing identity and group membership, as well as associated rights. This taonga (treasure) status entails particular sensitivities regarding its handling and use; these have been well explored in health, but less so in the forensic context. This article presents professional and lay Māori perspectives on forensic DNA technologies in New Zealand, highlighting the inseparability of these from Indigenous experiences of criminalization but also their value in informing operational, ethical and justice-oriented considerations.
{"title":"Māori views of forensic DNA evidence: an instrument of justice or criminalizing technology?","authors":"A. Ahuriri-Driscoll, Juan Tauri, J. Veth","doi":"10.1080/14636778.2020.1829463","DOIUrl":"https://doi.org/10.1080/14636778.2020.1829463","url":null,"abstract":"DNA profiling is just one of many tools available to police in a criminal investigation. However, unlike any other criminal investigative tool, DNA profiling has captured the public imagination. Its portrayal in popular fiction has given rise to the “CSI effect”, whereby the weight and credibility of science, combined with the predictive potential of DNA, produce an aura of infallibility and certainty only amplified by creative license. Genetic material holds particular significance for Indigenous peoples, establishing identity and group membership, as well as associated rights. This taonga (treasure) status entails particular sensitivities regarding its handling and use; these have been well explored in health, but less so in the forensic context. This article presents professional and lay Māori perspectives on forensic DNA technologies in New Zealand, highlighting the inseparability of these from Indigenous experiences of criminalization but also their value in informing operational, ethical and justice-oriented considerations.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"27 1","pages":"249 - 266"},"PeriodicalIF":1.8,"publicationDate":"2020-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84760876","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 : 2020-10-01DOI: 10.1080/14636778.2020.1845446
{"title":"Call for New Genetics and Society Special Issues","authors":"","doi":"10.1080/14636778.2020.1845446","DOIUrl":"https://doi.org/10.1080/14636778.2020.1845446","url":null,"abstract":"","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"48 1","pages":"508 - 508"},"PeriodicalIF":1.8,"publicationDate":"2020-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83675798","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 : 2020-10-01DOI: 10.1080/14636778.2020.1855786
{"title":"Many thanks to New Genetics & Society reviewers","authors":"","doi":"10.1080/14636778.2020.1855786","DOIUrl":"https://doi.org/10.1080/14636778.2020.1855786","url":null,"abstract":"","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"100 1","pages":"i - ii"},"PeriodicalIF":1.8,"publicationDate":"2020-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84971755","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 : 2020-09-26DOI: 10.1080/14636778.2020.1825932
Tiago Moreira
This paper describes and explores how translational research models, embedded in institutions and standards, interact with the epistemic and material practices of cell biologists of ageing, a field re-energized by emergent technoscientific promises that hinge on the possibility of eliminating or manipulating senescent cells to tackle age-related diseases. Drawing on a 3-year long lab ethnography, the paper suggests that knowledge making in cell biology of ageing relies on two different epistemic and material cultures, to then argue that these cultures combine in four different types of experimental systems, only one of which can properly be seen as pertaining to translation as usually conceived. The paper further analyses how cell biologists articulate the linear temporality of translational research with the unfolding experimental chains where, by shifting between types of experimental system, cell biologists are able to generatively reconfigure their epistemic objects, and the consequences of this fragile arrangements for the field.
{"title":"Translating cell biology of ageing? On the importance of choreographing knowledge","authors":"Tiago Moreira","doi":"10.1080/14636778.2020.1825932","DOIUrl":"https://doi.org/10.1080/14636778.2020.1825932","url":null,"abstract":"This paper describes and explores how translational research models, embedded in institutions and standards, interact with the epistemic and material practices of cell biologists of ageing, a field re-energized by emergent technoscientific promises that hinge on the possibility of eliminating or manipulating senescent cells to tackle age-related diseases. Drawing on a 3-year long lab ethnography, the paper suggests that knowledge making in cell biology of ageing relies on two different epistemic and material cultures, to then argue that these cultures combine in four different types of experimental systems, only one of which can properly be seen as pertaining to translation as usually conceived. The paper further analyses how cell biologists articulate the linear temporality of translational research with the unfolding experimental chains where, by shifting between types of experimental system, cell biologists are able to generatively reconfigure their epistemic objects, and the consequences of this fragile arrangements for the field.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"40 1","pages":"267 - 283"},"PeriodicalIF":1.8,"publicationDate":"2020-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81898106","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 : 2020-08-24DOI: 10.1080/14636778.2020.1811656
K. Tyler
This article explores how a branch of genomic science that embraces and advocates anti-racism, public participation, consultation and inclusion unintentionally supports everyday discourses of race and racism. It focuses on the reproduction of racism and exposes the limits of anti-racist discourses that are embedded in public engagements with the science and technology of genetic ancestry testing. I deploy a case study which is centerd on the analysis of commentaries posted on the internet which were written in response to a newspaper article that criticized the science of genetic ancestry testing. This article was published in The Daily Telegraph, a broadsheet “quality” newspaper in the UK. I analyse the ways in which ideas and images of British indigeneity and shared human descent that support white Western racial hierarchies, power and privileges emerge in the posts that responded to the newspaper article.
{"title":"Genetic ancestry testing, whiteness and the limits of anti-racism","authors":"K. Tyler","doi":"10.1080/14636778.2020.1811656","DOIUrl":"https://doi.org/10.1080/14636778.2020.1811656","url":null,"abstract":"This article explores how a branch of genomic science that embraces and advocates anti-racism, public participation, consultation and inclusion unintentionally supports everyday discourses of race and racism. It focuses on the reproduction of racism and exposes the limits of anti-racist discourses that are embedded in public engagements with the science and technology of genetic ancestry testing. I deploy a case study which is centerd on the analysis of commentaries posted on the internet which were written in response to a newspaper article that criticized the science of genetic ancestry testing. This article was published in The Daily Telegraph, a broadsheet “quality” newspaper in the UK. I analyse the ways in which ideas and images of British indigeneity and shared human descent that support white Western racial hierarchies, power and privileges emerge in the posts that responded to the newspaper article.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"14 1","pages":"216 - 235"},"PeriodicalIF":1.8,"publicationDate":"2020-08-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81697320","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 : 2020-08-16DOI: 10.1080/14636778.2020.1805305
S. Reinsch, Anika König, C. Rehmann-Sutter
This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider amniocentesis due to the risk of miscarriage, welcome the knowledge provided by, and the additional agency resulting from, NIPT. For others, declining the offer to “know more” becomes increasingly difficult to articulate. The absence of risk strips women of a “good reason” to justify their decision not to test, thus implicitly challenging their “right not to know.” Moreover, NIPT heightens moral dilemmas within relationships with partners, existing children, and sometimes other close relatives. While clinically “non-invasive,” we argue that NIPT changes decision-making in an ethically and socially highly significant way.
{"title":"Decision-making about non-invasive prenatal testing: women’s moral reasoning in the absence of a risk of miscarriage in Germany","authors":"S. Reinsch, Anika König, C. Rehmann-Sutter","doi":"10.1080/14636778.2020.1805305","DOIUrl":"https://doi.org/10.1080/14636778.2020.1805305","url":null,"abstract":"This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider amniocentesis due to the risk of miscarriage, welcome the knowledge provided by, and the additional agency resulting from, NIPT. For others, declining the offer to “know more” becomes increasingly difficult to articulate. The absence of risk strips women of a “good reason” to justify their decision not to test, thus implicitly challenging their “right not to know.” Moreover, NIPT heightens moral dilemmas within relationships with partners, existing children, and sometimes other close relatives. While clinically “non-invasive,” we argue that NIPT changes decision-making in an ethically and socially highly significant way.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"54 1","pages":"199 - 215"},"PeriodicalIF":1.8,"publicationDate":"2020-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"74935802","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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