Pub Date : 2023-03-28DOI: 10.1057/s41292-023-00299-7
Kaya Akyüz, Melanie Goisauf, Gauthier Chassang, Łukasz Kozera, Signe Mežinska, Olga Tzortzatou-Nanopoulou, Michaela Th Mayrhofer
Data practices in biomedical research often rely on standards that build on normative assumptions regarding privacy and involve 'ethics work.' In an increasingly datafied research environment, identifiability gains a new temporal and spatial dimension, especially in regard to genomic data. In this paper, we analyze how genomic identifiability is considered as a specific data issue in a recent controversial case: publication of the genome sequence of the HeLa cell line. Considering developments in the sociotechnological and data environment, such as big data, biomedical, recreational, and research uses of genomics, our analysis highlights what it means to be (re-)identifiable in the postgenomic era. By showing how the risk of genomic identifiability is not a specificity of the HeLa controversy, but rather a systematic data issue, we argue that a new conceptualization is needed. With the notion of post-identifiability as a sociotechnological situation, we show how past assumptions and ideas about future possibilities come together in the case of genomic identifiability. We conclude by discussing how kinship, temporality, and openness are subject to renewed negotiations along with the changing understandings and expectations of identifiability and status of genomic data.
{"title":"Post-identifiability in changing sociotechnological genomic data environments.","authors":"Kaya Akyüz, Melanie Goisauf, Gauthier Chassang, Łukasz Kozera, Signe Mežinska, Olga Tzortzatou-Nanopoulou, Michaela Th Mayrhofer","doi":"10.1057/s41292-023-00299-7","DOIUrl":"10.1057/s41292-023-00299-7","url":null,"abstract":"<p><p>Data practices in biomedical research often rely on standards that build on normative assumptions regarding privacy and involve 'ethics work.' In an increasingly datafied research environment, identifiability gains a new temporal and spatial dimension, especially in regard to genomic data. In this paper, we analyze how genomic identifiability is considered as a specific data issue in a recent controversial case: publication of the genome sequence of the HeLa cell line. Considering developments in the sociotechnological and data environment, such as big data, biomedical, recreational, and research uses of genomics, our analysis highlights what it means to be (re-)identifiable in the postgenomic era. By showing how the risk of genomic identifiability is not a specificity of the HeLa controversy, but rather a systematic data issue, we argue that a new conceptualization is needed. With the notion of <i>post-identifiability</i> as a sociotechnological situation, we show how past assumptions and ideas about future possibilities come together in the case of genomic identifiability. We conclude by discussing how kinship, temporality, and openness are subject to renewed negotiations along with the changing understandings and expectations of identifiability and status of genomic data.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-28"},"PeriodicalIF":1.6,"publicationDate":"2023-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10042674/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9717170","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-03-28DOI: 10.1057/s41292-023-00302-1
V. Raposo
{"title":"Homo chimaera after homo sapiens?: the legal status of human–non-human chimaeras with human brain cells","authors":"V. Raposo","doi":"10.1057/s41292-023-00302-1","DOIUrl":"https://doi.org/10.1057/s41292-023-00302-1","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-20"},"PeriodicalIF":1.6,"publicationDate":"2023-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44715516","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 : 2023-02-14DOI: 10.1057/s41292-022-00289-1
R. Dimond, N. Stephens
{"title":"Science and democracy on stage at the Science and Technology Select Committee","authors":"R. Dimond, N. Stephens","doi":"10.1057/s41292-022-00289-1","DOIUrl":"https://doi.org/10.1057/s41292-022-00289-1","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2023-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49237379","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 : 2023-01-27DOI: 10.1057/s41292-023-00298-8
Christi J. Guerrini, M. Trejo, Isabel Canfield, A. McGuire
{"title":"Correction: Core values of genomic citizen science: results from a qualitative interview study","authors":"Christi J. Guerrini, M. Trejo, Isabel Canfield, A. McGuire","doi":"10.1057/s41292-023-00298-8","DOIUrl":"https://doi.org/10.1057/s41292-023-00298-8","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1"},"PeriodicalIF":1.6,"publicationDate":"2023-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43601256","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 : 2023-01-21DOI: 10.1057/s41292-022-00296-2
Trine Schifter Larsen, Jesper Eugen-Olsen, Ove Andersen, Jeanette Wassar Kirk
In this article, we show how a particular biomarker comes into being in an emergency department in a hospital in Copenhagen, Denmark. We explore the contextual becoming of this biomarker, suPAR, through interviews with nurses and physicians and through relational ontology. We find that as a prognostic biomarker suPAR is challenged in it becoming as an object for clinical practice in the emergency department by the power of diagnostic practices and the desire for experience-based scripts that quickly enable the clinician to reach the right diagnosis. Although suPAR is enacted as a promising triage strategy suggesting a low or high risk of disease, the inability to rule out specific diagnoses and producing the notion of secure clinical actions make its non-specificity and prognostic character problematic in clinical practices. Specific diagnostic criteria versus prognostic interpretation and non-specificity risk profiling challenges the way healthcare workers in an emergency department understand the tasks they are set to solve and how to solve them. We discuss how the becoming of suPAR is strengthened through enactments of specificity and engagement in triage strategies and we reflect on it's becoming through new diagnostic practices with the need to accommodate diagnostic ambiguity.
{"title":"Challenges facing the clinical adoption of a new prognostic biomarker: a case study.","authors":"Trine Schifter Larsen, Jesper Eugen-Olsen, Ove Andersen, Jeanette Wassar Kirk","doi":"10.1057/s41292-022-00296-2","DOIUrl":"10.1057/s41292-022-00296-2","url":null,"abstract":"<p><p>In this article, we show how a particular biomarker comes into being in an emergency department in a hospital in Copenhagen, Denmark. We explore the contextual becoming of this biomarker, suPAR, through interviews with nurses and physicians and through relational ontology. We find that as a prognostic biomarker suPAR is challenged in it becoming as an object for clinical practice in the emergency department by the power of diagnostic practices and the desire for experience-based scripts that quickly enable the clinician to reach the right diagnosis. Although suPAR is enacted as a promising triage strategy suggesting a low or high risk of disease, the inability to rule out specific diagnoses and producing the notion of secure clinical actions make its non-specificity and prognostic character problematic in clinical practices. Specific diagnostic criteria versus prognostic interpretation and non-specificity risk profiling challenges the way healthcare workers in an emergency department understand the tasks they are set to solve and how to solve them. We discuss how the becoming of suPAR is strengthened through enactments of specificity and engagement in triage strategies and we reflect on it's becoming through new diagnostic practices with the need to accommodate diagnostic ambiguity.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-23"},"PeriodicalIF":1.6,"publicationDate":"2023-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9860228/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10583244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-07DOI: 10.1057/s41292-022-00288-2
Mariana Bombo Perozzi Gameiro, Mathieu Quet
Medical and pharmaceutical uses of animal life have gone through vast changes in the past centuries. Although the commodification of animals and animal parts is by no means an invention of modernity, its procedures and practices have evolved in multiple ways across time. Most notably, the exploitation of non-human animal life has been increasingly segmented, industrialized, and globalized. The collateral expansion of scientific and market institutions has led to specific modes of rationalization of animal breeding, culture, and trade for pharmaceutical purposes. However, this rationalization process has never been immune to its own matter-and the materiality of non-human commodification processes irrigates seemingly ordered and layered practices. Based upon a study on the international trade of donkey hide, this paper offers a characterization of the current pharmaceutical uses of animal life through a series of epistemic and environmental tensions expressing frictions between the market's absorptive logic and non-human modes of existence. We describe this set of tensions as 'feral pharmaceuticalization' and contend that they offer new perspectives on the analysis of the contemporary pharmaceuticalization process. In addition, such tensions showcase the importance of investigating the expansion of technological markets not only as simultaneous knowledge and milieux (or bodies) making, or as simple science and market hegemonic processes, but also as the construction of new stages of conflict.
{"title":"Feral pharmaceuticalization-Biomedical uses of animal life in light of the global donkey hide trade.","authors":"Mariana Bombo Perozzi Gameiro, Mathieu Quet","doi":"10.1057/s41292-022-00288-2","DOIUrl":"10.1057/s41292-022-00288-2","url":null,"abstract":"<p><p>Medical and pharmaceutical uses of animal life have gone through vast changes in the past centuries. Although the commodification of animals and animal parts is by no means an invention of modernity, its procedures and practices have evolved in multiple ways across time. Most notably, the exploitation of non-human animal life has been increasingly segmented, industrialized, and globalized. The collateral expansion of scientific and market institutions has led to specific modes of rationalization of animal breeding, culture, and trade for pharmaceutical purposes. However, this rationalization process has never been immune to its own matter-and the materiality of non-human commodification processes irrigates seemingly ordered and layered practices. Based upon a study on the international trade of donkey hide, this paper offers a characterization of the current pharmaceutical uses of animal life through a series of epistemic and environmental tensions expressing frictions between the market's absorptive logic and non-human modes of existence. We describe this set of tensions as 'feral pharmaceuticalization' and contend that they offer new perspectives on the analysis of the contemporary pharmaceuticalization process. In addition, such tensions showcase the importance of investigating the expansion of technological markets not only as simultaneous knowledge and <i>milieux</i> (or bodies) making, or as simple science and market hegemonic processes, but also as the construction of new stages of conflict.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-28"},"PeriodicalIF":1.6,"publicationDate":"2023-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9823251/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10535891","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-07DOI: 10.1057/s41292-022-00295-3
R. McGlacken
{"title":"Negotiating the necessity of biomedical animal use through relations with vulnerability","authors":"R. McGlacken","doi":"10.1057/s41292-022-00295-3","DOIUrl":"https://doi.org/10.1057/s41292-022-00295-3","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-19"},"PeriodicalIF":1.6,"publicationDate":"2023-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46386291","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 : 2023-01-01DOI: 10.1057/s41292-021-00266-0
Clare Herrick
The UK response to Covid-19 has been unusually complex in its ever-shifting classifications of clinical vulnerability. By May 2020, 2.2 million people had been identified as 'clinically extremely vulnerable' (CEV) and were asked to 'shield' at home for over four months. To adhere to this strict guidance, they were enfolded within the patchy infrastructure of the 'shielding programme'. However, membership of the 'shielded list' has changed-often without warning or explanation-through time and across space. Drawing on policy and evidentiary documents, government speeches, reports, press conferences and media analysis of Covid-19 coverage between March 2020 and April 1, 2021, this paper traces the shifting delineations of clinical vulnerability in the UK response across three lockdowns. It argues that the complexities and confusions generated by the transience of the CEV category have fed into forms of biosociality that have been as much about making practical sense of government guidance as a form of mutual support amid crisis. This uncertainty has not eased as restrictions have been relaxed and vaccines rolled out. Instead, tracing individual immune response has become a burgeoning industry as 'the shielded' navigate the uneasy demands of taking 'personal responsibility' rather than being protected by 'the rules'.
{"title":"'We thank you for your sacrifice': Clinical vulnerability, shielding and biosociality in the UK's Covid-19 response.","authors":"Clare Herrick","doi":"10.1057/s41292-021-00266-0","DOIUrl":"https://doi.org/10.1057/s41292-021-00266-0","url":null,"abstract":"<p><p>The UK response to Covid-19 has been unusually complex in its ever-shifting classifications of clinical vulnerability. By May 2020, 2.2 million people had been identified as 'clinically extremely vulnerable' (CEV) and were asked to 'shield' at home for over four months. To adhere to this strict guidance, they were enfolded within the patchy infrastructure of the 'shielding programme'. However, membership of the 'shielded list' has changed-often without warning or explanation-through time and across space. Drawing on policy and evidentiary documents, government speeches, reports, press conferences and media analysis of Covid-19 coverage between March 2020 and April 1, 2021, this paper traces the shifting delineations of clinical vulnerability in the UK response across three lockdowns. It argues that the complexities and confusions generated by the transience of the CEV category have fed into forms of biosociality that have been as much about making practical sense of government guidance as a form of mutual support amid crisis. This uncertainty has not eased as restrictions have been relaxed and vaccines rolled out. Instead, tracing individual immune response has become a burgeoning industry as 'the shielded' navigate the uneasy demands of taking 'personal responsibility' rather than being protected by 'the rules'.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"218-240"},"PeriodicalIF":1.6,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8783156/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9526401","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1057/s41292-021-00251-7
Susan Wardell
Crowdfunding platforms apply a marketized, competitive logic to healthcare, increasingly functioning as generative spaces in which worthy citizens and biopolitical subjects are produced. Using a lens of biopower, this article considers what sort of biopolitical subjectivities were produced in and through New Zealand crowdfunding campaigns during the 2020 COVID-19 lockdown. It focuses on a discursive and dialogical analysis of 59 online medical crowdfunding campaigns that were active during lockdown and chose to mention the pandemic. These pages pointed to interrelated biological, social and economic precarities, speaking to questions about how citizens navigate uneven needs during uncertain times. Findings showed that crowdfunders referred to the pandemic in order to narrate their own situation in culturally coherent ways and to establish context-specific relations of care. This included contextualising their needs through establishing shared crisis narratives that also made the infrastructural contexts of healthcare visible and performing relational labour in ways that aligned with nationally specific affective regimes. By highlighting their own vulnerability, crowdfunders strategically mobilised broader lockdown discourses of self-sacrifice on behalf of vulnerable people. In this way, New Zealand's lockdown produced subjectivities both drawing on wider neoliberal moral regimes and specific to the nuanced and emergent moral systems of pandemic citizenship.
{"title":"To wish you well: the biopolitical subjectivities of medical crowdfunders during and after Aotearoa New Zealand's COVID-19 lockdown.","authors":"Susan Wardell","doi":"10.1057/s41292-021-00251-7","DOIUrl":"https://doi.org/10.1057/s41292-021-00251-7","url":null,"abstract":"<p><p>Crowdfunding platforms apply a marketized, competitive logic to healthcare, increasingly functioning as generative spaces in which worthy citizens and biopolitical subjects are produced. Using a lens of biopower, this article considers what sort of biopolitical subjectivities were produced in and through New Zealand crowdfunding campaigns during the 2020 COVID-19 lockdown. It focuses on a discursive and dialogical analysis of 59 online medical crowdfunding campaigns that were active during lockdown and chose to mention the pandemic. These pages pointed to interrelated biological, social and economic precarities, speaking to questions about how citizens navigate uneven needs during uncertain times. Findings showed that crowdfunders referred to the pandemic in order to narrate their own situation in culturally coherent ways and to establish context-specific relations of care. This included contextualising their needs through establishing shared crisis narratives that also made the infrastructural contexts of healthcare visible and performing relational labour in ways that aligned with nationally specific affective regimes. By highlighting their own vulnerability, crowdfunders strategically mobilised broader lockdown discourses of self-sacrifice on behalf of vulnerable people. In this way, New Zealand's lockdown produced subjectivities both drawing on wider neoliberal moral regimes and specific to the nuanced and emergent moral systems of pandemic citizenship.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"52-78"},"PeriodicalIF":1.6,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8456189/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9510353","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1057/s41292-021-00257-1
Tony Sandset, Kaspar Villadsen, Kristin Heggen, Eivind Engebretsen
This article explores recent HIV prevention campaigns for pre-exposure prophylaxis (PrEP), focusing on how they integrate pleasure and desire in their calls for self-discipline through a continual use of pharmaceuticals. This emerging type of health promotion, here represented by ads promoting the preventive use of pharmaceuticals, no longer simply approaches target groups with demands to abstain from harmful substances or practices and thus control risks, but also includes messages that recognize individuals' habits, values, and their desires for pleasure. Drawing on Foucault's work concerning discipline and security, we suggest that a novel, permissive discipline is emerging in contemporary HIV prevention. Further guided by Barthes's theory of images, we analyse posters used in prevention campaigns, scrutinizing their culture-specific imagery and linguistic messages, i.e. how the words and images interact. We conclude that these campaigns introduce a new temporality of prevention, one centred on pleasure through the pre-emption and planning that PrEP enables.
{"title":"Discipline for pleasure: a new governmentality of HIV prevention.","authors":"Tony Sandset, Kaspar Villadsen, Kristin Heggen, Eivind Engebretsen","doi":"10.1057/s41292-021-00257-1","DOIUrl":"https://doi.org/10.1057/s41292-021-00257-1","url":null,"abstract":"<p><p>This article explores recent HIV prevention campaigns for pre-exposure prophylaxis (PrEP), focusing on how they integrate pleasure and desire in their calls for self-discipline through a continual use of pharmaceuticals. This emerging type of health promotion, here represented by ads promoting the preventive use of pharmaceuticals, no longer simply approaches target groups with demands to abstain from harmful substances or practices and thus control risks, but also includes messages that recognize individuals' habits, values, and their desires for pleasure. Drawing on Foucault's work concerning discipline and security, we suggest that a novel, permissive discipline is emerging in contemporary HIV prevention. Further guided by Barthes's theory of images, we analyse posters used in prevention campaigns, scrutinizing their culture-specific imagery and linguistic messages, i.e. how the words and images interact. We conclude that these campaigns introduce a new temporality of prevention, one centred on pleasure through the pre-emption and planning that PrEP enables.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"102-127"},"PeriodicalIF":1.6,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8481318/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9510354","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}