Pub Date : 2020-06-14DOI: 10.1080/14636778.2020.1778459
Mianna Meskus, Venla Oikkonen
Therapies and prophylactics using biologically derived materials such as cells, microbes or tissues are often portrayed as key to increased future health. This article investigates the material preconditions of such visions. Building on feminist new materialist approaches, it explores the embodied material encounters between biologicals administered into living bodies and the vibrant materiality of the body. We investigate embodied material encounters through two biologicals, pandemic vaccines and stem cell therapies, focusing on vaccine-associated narcolepsy during the 2009 pandemic, and adverse reactions in an experimental stem cell therapy targeting an eye disease called AMD. We propose that the concept of embodied material encounter provides an important tool for STS by making visible the constitutive situatedness of risk and promise and the multiplicity of futures in therapeutically harnessed biological processes. We argue that ethically accountable visions of biomedical futures need to be anchored in a nuanced understanding of these embodied processes.
{"title":"Embodied material encounters and the ambiguous promise of biomedical futures: The case of biologically derived medicines","authors":"Mianna Meskus, Venla Oikkonen","doi":"10.1080/14636778.2020.1778459","DOIUrl":"https://doi.org/10.1080/14636778.2020.1778459","url":null,"abstract":"Therapies and prophylactics using biologically derived materials such as cells, microbes or tissues are often portrayed as key to increased future health. This article investigates the material preconditions of such visions. Building on feminist new materialist approaches, it explores the embodied material encounters between biologicals administered into living bodies and the vibrant materiality of the body. We investigate embodied material encounters through two biologicals, pandemic vaccines and stem cell therapies, focusing on vaccine-associated narcolepsy during the 2009 pandemic, and adverse reactions in an experimental stem cell therapy targeting an eye disease called AMD. We propose that the concept of embodied material encounter provides an important tool for STS by making visible the constitutive situatedness of risk and promise and the multiplicity of futures in therapeutically harnessed biological processes. We argue that ethically accountable visions of biomedical futures need to be anchored in a nuanced understanding of these embodied processes.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2020-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"91032190","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 : 2020-06-07DOI: 10.1080/14636778.2020.1775563
C. Kroløkke, A. Bach
This article examines how cryopreserved ovarian tissue is potentiated as a menopausal prevention and/or treatment cure. Based on a multi-sited ethnographic study, the article empirically foregrounds scientific accounts and interviews with Danish female cancer patients who had ovarian tissue preserved. Using situational analysis as a methodological approach along with analytical perspectives on potentiality, we identify three framings revealing how cryotechnology intervenes with women’s reproductive aging: Cryopreservation as a risk management technology, as an optimizing technology, and as a synchronization technology. The article shows how the ability to cryopreserve ovarian tissue in order to reverse menopause draws upon an understanding of menopause as not only controllable but of cryopreservation as a resource-wise technology that manages women’s aging bodies. Suggesting “cryomedicalization” as a term, the article highlights how cryopreserved ovarian tissue (re)constitutes normative temporalities, produces new understandings of cryo-restoration and raises questions related to the cryopolitics of women’s aging.
{"title":"Putting menopause on ice: the cryomedicalization of reproductive aging","authors":"C. Kroløkke, A. Bach","doi":"10.1080/14636778.2020.1775563","DOIUrl":"https://doi.org/10.1080/14636778.2020.1775563","url":null,"abstract":"This article examines how cryopreserved ovarian tissue is potentiated as a menopausal prevention and/or treatment cure. Based on a multi-sited ethnographic study, the article empirically foregrounds scientific accounts and interviews with Danish female cancer patients who had ovarian tissue preserved. Using situational analysis as a methodological approach along with analytical perspectives on potentiality, we identify three framings revealing how cryotechnology intervenes with women’s reproductive aging: Cryopreservation as a risk management technology, as an optimizing technology, and as a synchronization technology. The article shows how the ability to cryopreserve ovarian tissue in order to reverse menopause draws upon an understanding of menopause as not only controllable but of cryopreservation as a resource-wise technology that manages women’s aging bodies. Suggesting “cryomedicalization” as a term, the article highlights how cryopreserved ovarian tissue (re)constitutes normative temporalities, produces new understandings of cryo-restoration and raises questions related to the cryopolitics of women’s aging.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2020-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80971623","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 : 2020-06-05DOI: 10.1080/14636778.2020.1775564
Nora Komposch, C. Schurr
Sandra P. Gonzales-Santos’s A Portrait of Assisted Reproduction in Mexico offers a unique insight into the fast-growing field of assisted reproduction in Mexico. By presenting the sociocultural, po...
Sandra P. Gonzales-Santos的《墨西哥辅助生殖的肖像》为墨西哥快速发展的辅助生殖领域提供了一个独特的视角。通过展示社会文化，……
{"title":"A portrait of assisted reproduction in Mexico: scientific, political, and cultural interactions","authors":"Nora Komposch, C. Schurr","doi":"10.1080/14636778.2020.1775564","DOIUrl":"https://doi.org/10.1080/14636778.2020.1775564","url":null,"abstract":"Sandra P. Gonzales-Santos’s A Portrait of Assisted Reproduction in Mexico offers a unique insight into the fast-growing field of assisted reproduction in Mexico. By presenting the sociocultural, po...","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2020-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86631322","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 : 2020-05-15DOI: 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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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}
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