Pub Date : 2020-05-15DOI: 10.1080/14636778.2020.1755636
Aviad E. Raz, E. Niemiec, H. Howard, S. Sterckx, Julian Cockbain, B. Prainsack
23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production.
{"title":"Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users","authors":"Aviad E. Raz, E. Niemiec, H. Howard, S. Sterckx, Julian Cockbain, B. Prainsack","doi":"10.1080/14636778.2020.1755636","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755636","url":null,"abstract":"23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"86 1","pages":"459 - 482"},"PeriodicalIF":1.8,"publicationDate":"2020-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86914463","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 : 2020-04-30DOI: 10.1080/14636778.2020.1755638
Roos Hopman
Forensic DNA Phenotyping (FDP) encompasses an emerging set of technologies aimed at predicting physical characteristics of unknown suspects from crime scene DNA traces. In its application FDP involves a variety of settings: research laboratories where FDP tests are developed, forensic laboratories where FDP technologies are used to analyze crime scene DNA traces, and finally the criminal investigation, where results of tests are applied towards finding suspects. In this paper I show that the practices in each of these settings work by a different set of concerns, which I articulate by adopting the notion of “logics” as developed by Annemarie Mol. I ethnographically trace FDP from research lab to investigation, identifying three different logics along the way: those of accuracy, commonality, and valuing respectively. Taken together, I show that these practices do not linearly accumulate but form a heterogeneous assemblage, adding nuance to discussions surrounding FDP.
{"title":"Opening up forensic DNA phenotyping: the logics of accuracy, commonality and valuing","authors":"Roos Hopman","doi":"10.1080/14636778.2020.1755638","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755638","url":null,"abstract":"Forensic DNA Phenotyping (FDP) encompasses an emerging set of technologies aimed at predicting physical characteristics of unknown suspects from crime scene DNA traces. In its application FDP involves a variety of settings: research laboratories where FDP tests are developed, forensic laboratories where FDP technologies are used to analyze crime scene DNA traces, and finally the criminal investigation, where results of tests are applied towards finding suspects. In this paper I show that the practices in each of these settings work by a different set of concerns, which I articulate by adopting the notion of “logics” as developed by Annemarie Mol. I ethnographically trace FDP from research lab to investigation, identifying three different logics along the way: those of accuracy, commonality, and valuing respectively. Taken together, I show that these practices do not linearly accumulate but form a heterogeneous assemblage, adding nuance to discussions surrounding FDP.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"15 1","pages":"424 - 440"},"PeriodicalIF":1.8,"publicationDate":"2020-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83198727","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 : 2020-04-30DOI: 10.1080/14636778.2020.1755637
Alexander Friedrich
While the demand for “social freezing” services has increased significantly in recent years, the number of cryopreserved eggs that are actually being used in treatment remains very low, so far. Both tendencies indicate a continuously growing stock of unused oocytes. In this article, I discuss the possibility that the growing stock could be co-opted to solve the problem of egg procurement especially for biomedical research. As a consequence, the secondary utilization of female fertility resources would become their main form of use. However, this would finally turn the customers of fertility services into unintended productive forces of a cryotechnologically advanced bioeconomy. The paper discusses the risk of a subtle form of exploitation that could be associated with this reproductive service in the future, which will pose further challenges for the practice of informed consent.
{"title":"A cold yield. Cryopreserved oocytes of “social freezing” customers as potential option values for biomedical research","authors":"Alexander Friedrich","doi":"10.1080/14636778.2020.1755637","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755637","url":null,"abstract":"While the demand for “social freezing” services has increased significantly in recent years, the number of cryopreserved eggs that are actually being used in treatment remains very low, so far. Both tendencies indicate a continuously growing stock of unused oocytes. In this article, I discuss the possibility that the growing stock could be co-opted to solve the problem of egg procurement especially for biomedical research. As a consequence, the secondary utilization of female fertility resources would become their main form of use. However, this would finally turn the customers of fertility services into unintended productive forces of a cryotechnologically advanced bioeconomy. The paper discusses the risk of a subtle form of exploitation that could be associated with this reproductive service in the future, which will pose further challenges for the practice of informed consent.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"28 1","pages":"327 - 351"},"PeriodicalIF":1.8,"publicationDate":"2020-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77842046","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 : 2020-04-28DOI: 10.1080/14636778.2020.1755635
M. Terkildsen, V. Burau, Ulla Væggemose, Nina Konstantin Nissen
This study explored the relationship between visions of personalized medicine, for-profit companies, and state governance in the context of an ongoing discussion of “me” vs. “we” medicine. It took its empirical departure in a Scandinavian welfare state, Denmark, and a discourse analysis was conducted based on interviews, documents, webpages, and media sources from vital public and private stakeholders. The analysis demonstrated how the development of a program for personalized medicine in Denmark emerges as largely driven by the state. Although for-profit companies are involved, the Danish state governs the development of the personalized medicine program single-handedly. This results in a form of personalized medicine framed in both “me” and “we” discursive terms. The analysis revealed that the welfare state plays a dominating role and controls these discourses articulating certain ideas of “me” and “we.” When compared to other studies, these results showed how the role of welfare states may still remain potent in the development of personalized medicine, and in the case of a Scandinavian welfare state, this challenges established views of a “me” vs. “we” dichotomy.
{"title":"The welfare state driving “me” and “we” medicine – a critical discourse analysis","authors":"M. Terkildsen, V. Burau, Ulla Væggemose, Nina Konstantin Nissen","doi":"10.1080/14636778.2020.1755635","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755635","url":null,"abstract":"This study explored the relationship between visions of personalized medicine, for-profit companies, and state governance in the context of an ongoing discussion of “me” vs. “we” medicine. It took its empirical departure in a Scandinavian welfare state, Denmark, and a discourse analysis was conducted based on interviews, documents, webpages, and media sources from vital public and private stakeholders. The analysis demonstrated how the development of a program for personalized medicine in Denmark emerges as largely driven by the state. Although for-profit companies are involved, the Danish state governs the development of the personalized medicine program single-handedly. This results in a form of personalized medicine framed in both “me” and “we” discursive terms. The analysis revealed that the welfare state plays a dominating role and controls these discourses articulating certain ideas of “me” and “we.” When compared to other studies, these results showed how the role of welfare states may still remain potent in the development of personalized medicine, and in the case of a Scandinavian welfare state, this challenges established views of a “me” vs. “we” dichotomy.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"5 1","pages":"404 - 423"},"PeriodicalIF":1.8,"publicationDate":"2020-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89131151","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 : 2020-04-26DOI: 10.1080/14636778.2020.1755640
Courtney Addison
In Bioinsecurities, Neel Ahuja charts the lively and affective forces that constitute and threaten US empire. Racialized discourses of contagion and risk are repeatedly coded as matters of security...
{"title":"Bioinsecurities: disease interventions, empire, and the government of species","authors":"Courtney Addison","doi":"10.1080/14636778.2020.1755640","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755640","url":null,"abstract":"In Bioinsecurities, Neel Ahuja charts the lively and affective forces that constitute and threaten US empire. Racialized discourses of contagion and risk are repeatedly coded as matters of security...","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"29 1","pages":"236 - 237"},"PeriodicalIF":1.8,"publicationDate":"2020-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82809369","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 : 2020-04-21DOI: 10.1080/14636778.2020.1755639
Roy Gilbar, S. Barnoy
Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives.
{"title":"Facing legal barriers regarding disclosure of genetic information to relatives","authors":"Roy Gilbar, S. Barnoy","doi":"10.1080/14636778.2020.1755639","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755639","url":null,"abstract":"Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"8 1","pages":"483 - 501"},"PeriodicalIF":1.8,"publicationDate":"2020-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78296197","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 : 2020-04-21DOI: 10.1080/14636778.2020.1755641
Kostas Kampourakis
There is no doubt that television can provide various representations of what science is and how it is done, as well as convey various messages about the specifics of various disciplines. As far as...
{"title":"Television and the genetic imaginary","authors":"Kostas Kampourakis","doi":"10.1080/14636778.2020.1755641","DOIUrl":"https://doi.org/10.1080/14636778.2020.1755641","url":null,"abstract":"There is no doubt that television can provide various representations of what science is and how it is done, as well as convey various messages about the specifics of various disciplines. As far as...","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"317 1","pages":"238 - 239"},"PeriodicalIF":1.8,"publicationDate":"2020-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77429011","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 : 2020-04-09DOI: 10.1080/14636778.2020.1736537
J. Calvert, E. Szymanski
Synthetic biologists attempt to apply engineering principles to biological systems. This involves treating organisms as “chassis” – neutral frames into which synthetic constructs can be inserted, rather than living entities with distinctive features. Here we focus on a particularly charismatic organism – Saccharomyces cerevisiae (brewer's yeast) – and the attempt to make a synthetic version of its genome. We argue that the “personality” of the yeast and the affective relationship scientists (and others) have to it, challenges the “organism agnosticism” of synthetic biology. This leads us to ask whether synthetic biologists have straightforwardly exploitative relationships to the organisms they work on. We connect this “feeling for the (micro)organism” to the activity of engineering whole genomes, rather than discrete genetic parts. We argue that this connection is significant because we are likely to see an escalation in attempts to synthesize complete genomes in the future, including the human genome.
{"title":"A feeling for the (micro)organism? Yeastiness, organism agnosticism and whole genome synthesis","authors":"J. Calvert, E. Szymanski","doi":"10.1080/14636778.2020.1736537","DOIUrl":"https://doi.org/10.1080/14636778.2020.1736537","url":null,"abstract":"Synthetic biologists attempt to apply engineering principles to biological systems. This involves treating organisms as “chassis” – neutral frames into which synthetic constructs can be inserted, rather than living entities with distinctive features. Here we focus on a particularly charismatic organism – Saccharomyces cerevisiae (brewer's yeast) – and the attempt to make a synthetic version of its genome. We argue that the “personality” of the yeast and the affective relationship scientists (and others) have to it, challenges the “organism agnosticism” of synthetic biology. This leads us to ask whether synthetic biologists have straightforwardly exploitative relationships to the organisms they work on. We connect this “feeling for the (micro)organism” to the activity of engineering whole genomes, rather than discrete genetic parts. We argue that this connection is significant because we are likely to see an escalation in attempts to synthesize complete genomes in the future, including the human genome.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"53 1","pages":"385 - 403"},"PeriodicalIF":1.8,"publicationDate":"2020-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90285544","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 : 2020-04-02DOI: 10.1080/14636778.2020.1730166
P. Martin, M. Morrison, Ilke Turkmendag, B. Nerlich, Aisling McMahon, Stevienna de Saille, A. Bartlett
Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical regimes” composed of practices, institutions, norms, and cultural beliefs. The analysis focuses on how genome editing is emerging in different domains and whether this marks continuity or disruption of the established biotechnology regime. In conclusion, it will be argued that genome editing is best understood as a technology platform that is being powerfully shaped by this existing regime but is starting to disrupt the governance of biotechnology. In the longer term is it set to converge with other powerful technology platforms, which together will fundamentally transform the capacity to engineer life.
{"title":"Genome editing: the dynamics of continuity, convergence, and change in the engineering of life","authors":"P. Martin, M. Morrison, Ilke Turkmendag, B. Nerlich, Aisling McMahon, Stevienna de Saille, A. Bartlett","doi":"10.1080/14636778.2020.1730166","DOIUrl":"https://doi.org/10.1080/14636778.2020.1730166","url":null,"abstract":"Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical regimes” composed of practices, institutions, norms, and cultural beliefs. The analysis focuses on how genome editing is emerging in different domains and whether this marks continuity or disruption of the established biotechnology regime. In conclusion, it will be argued that genome editing is best understood as a technology platform that is being powerfully shaped by this existing regime but is starting to disrupt the governance of biotechnology. In the longer term is it set to converge with other powerful technology platforms, which together will fundamentally transform the capacity to engineer life.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"15 1","pages":"219 - 242"},"PeriodicalIF":1.8,"publicationDate":"2020-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82070418","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 : 2020-04-02DOI: 10.1080/14636778.2019.1686968
Li Jiang
The EU aspires to utilize the economic advantages of gene-editing technology on one hand and ensure human health and environmental safety on the other. Surrounding the fierce debates over emerging gene-edited plant, the current debate focused on the issue of whether the gene-edited crop should be within or outside the GMO law and its implication for innovation. It should not be forgotten that it is also involved in the complex patentability issues pertaining to the legal interpretation of the patent law. The gene-edited crop is governed by GMO regulations due to its potential risk to human health and environmental safety. But it is heavily patented, as patent regulations ignore its potential risk. This article examines the discrepancy of the gene-edited crop between the existing GMO law and the patent law and reveals the challenges to current EU jurisdiction, including the international trade impediment challenge, the patent monopoly challenge, the market confusion challenge, and the agricultural economy suspension challenge. In the end, this article argues that EU GMO regulations should be bridged with a patent system in facing the regulatory challenges from the gene-edited crop.
{"title":"Commercialization of the gene-edited crop and morality: challenges from the liberal patent law and the strict GMO law in the EU","authors":"Li Jiang","doi":"10.1080/14636778.2019.1686968","DOIUrl":"https://doi.org/10.1080/14636778.2019.1686968","url":null,"abstract":"The EU aspires to utilize the economic advantages of gene-editing technology on one hand and ensure human health and environmental safety on the other. Surrounding the fierce debates over emerging gene-edited plant, the current debate focused on the issue of whether the gene-edited crop should be within or outside the GMO law and its implication for innovation. It should not be forgotten that it is also involved in the complex patentability issues pertaining to the legal interpretation of the patent law. The gene-edited crop is governed by GMO regulations due to its potential risk to human health and environmental safety. But it is heavily patented, as patent regulations ignore its potential risk. This article examines the discrepancy of the gene-edited crop between the existing GMO law and the patent law and reveals the challenges to current EU jurisdiction, including the international trade impediment challenge, the patent monopoly challenge, the market confusion challenge, and the agricultural economy suspension challenge. In the end, this article argues that EU GMO regulations should be bridged with a patent system in facing the regulatory challenges from the gene-edited crop.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":"45 1","pages":"191 - 218"},"PeriodicalIF":1.8,"publicationDate":"2020-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76939735","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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