Pub Date : 2023-06-02DOI: 10.1057/s41292-023-00305-y
C. B. Jacobsen, D. Kristensen, B. Bruun
{"title":"In whose pockets? How small Danish patient organisations balance legitimacy, representation and dependency in collaboration with public sector medical researchers and the life science industry","authors":"C. B. Jacobsen, D. Kristensen, B. Bruun","doi":"10.1057/s41292-023-00305-y","DOIUrl":"https://doi.org/10.1057/s41292-023-00305-y","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2023-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44909726","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 : 2023-05-26DOI: 10.1057/s41292-023-00303-0
Thibaut Serviant-Fine, M. Arminjon, Y. Fayet, É. Giroux
{"title":"Allostatic load: historical origins, promises and costs of a recent biosocial approach","authors":"Thibaut Serviant-Fine, M. Arminjon, Y. Fayet, É. Giroux","doi":"10.1057/s41292-023-00303-0","DOIUrl":"https://doi.org/10.1057/s41292-023-00303-0","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":""},"PeriodicalIF":1.6,"publicationDate":"2023-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44236397","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 : 2023-05-22DOI: 10.1057/s41292-023-00304-z
Isabella M Radhuber, Christian Haddad, Katharina Kieslich, Katharina T Paul, Barbara Prainsack, Seliem El-Sayed, Lukas Schlogl, Wanda Spahl, Elias Weiss
Drawing upon 152 in-depth qualitative interviews with residents in Austria carried out in the first year of the pandemic, this article discusses how people's experiences with COVID-19 policies reflect and reshape state-citizen relations. Coinciding with a significant government crisis, the first year of COVID-19 in Austria saw pandemic measures justified with reference to a biological, often medical understanding of health that framed disease prevention in terms of transmission reduction, often with reference to metrics such as hospitalisation rates, etc. Instead of using this biomedical frame, our interviewees, however, drew attention to biopsychosocial dimensions of the crisis and problematised the entanglements between economy and health. We call this the emergence of a biosocial notion of citizenship that is attentive to psychological, social and economic dimensions of health. Insights into the biosocial nature of pandemic citizenship open a window of opportunity for addressing long-standing social injustices.
{"title":"Citizenship in times of crisis: biosocial state-citizen relations during COVID-19 in Austria.","authors":"Isabella M Radhuber, Christian Haddad, Katharina Kieslich, Katharina T Paul, Barbara Prainsack, Seliem El-Sayed, Lukas Schlogl, Wanda Spahl, Elias Weiss","doi":"10.1057/s41292-023-00304-z","DOIUrl":"10.1057/s41292-023-00304-z","url":null,"abstract":"<p><p>Drawing upon 152 in-depth qualitative interviews with residents in Austria carried out in the first year of the pandemic, this article discusses how people's experiences with COVID-19 policies reflect and reshape state-citizen relations. Coinciding with a significant government crisis, the first year of COVID-19 in Austria saw pandemic measures justified with reference to a biological, often medical understanding of health that framed disease prevention in terms of transmission reduction, often with reference to metrics such as hospitalisation rates, etc. Instead of using this biomedical frame, our interviewees, however, drew attention to biopsychosocial dimensions of the crisis and problematised the entanglements between economy and health. We call this the emergence of a <i>biosocial</i> notion of citizenship that is attentive to psychological, social and economic dimensions of health. Insights into the biosocial nature of pandemic citizenship open a window of opportunity for addressing long-standing social injustices.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-26"},"PeriodicalIF":1.3,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201040/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9717168","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/s41292-023-00301-2
Anna Wexler, Rebekah Choi, Alex Pearlman, Lisa M Rasmussen
Non-establishment or do-it-yourself (DIY) science involves individuals who may not have formal training conducting experiments outside of institutional settings. While prior scholarship has examined the motivations and values of those involved in the subset of DIY science known as "DIY biology," little research has addressed how these individuals navigate ethical issues in practice. The present study therefore aimed to understand how DIY biologists identify, approach, and resolve one particular ethical issue-biosafety-in their work. We conducted a digital ethnography of Just One Giant Lab (JOGL), the primary hub for DIY biology during the COVID-19 pandemic, and subsequently conducted interviews with individuals involved with JOGL. We found that JOGL was the first global DIY biology initiative to create a Biosafety Advisory Board and develop formal biosafety guidelines that applied to different groups in multiple locations. There was disagreement, however, regarding whether the Board should have an advisory role or provide mandatory oversight. We found that JOGL practiced ethical gatekeeping of projects that fell outside the limits defined by the Board. Our findings show that the DIY biology community recognized biosafety issues and tried to build infrastructure to facilitate the safe conduct of research.
Supplementary information: The online version contains supplementary material available at 10.1057/s41292-023-00301-2.
{"title":"Navigating biosafety concerns within COVID-19 do-it-yourself (DIY) science: an ethnographic and interview study.","authors":"Anna Wexler, Rebekah Choi, Alex Pearlman, Lisa M Rasmussen","doi":"10.1057/s41292-023-00301-2","DOIUrl":"10.1057/s41292-023-00301-2","url":null,"abstract":"<p><p>Non-establishment or do-it-yourself (DIY) science involves individuals who may not have formal training conducting experiments outside of institutional settings. While prior scholarship has examined the motivations and values of those involved in the subset of DIY science known as \"DIY biology,\" little research has addressed how these individuals navigate ethical issues in practice. The present study therefore aimed to understand how DIY biologists identify, approach, and resolve one particular ethical issue-biosafety-in their work. We conducted a digital ethnography of Just One Giant Lab (JOGL), the primary hub for DIY biology during the COVID-19 pandemic, and subsequently conducted interviews with individuals involved with JOGL. We found that JOGL was the first global DIY biology initiative to create a Biosafety Advisory Board and develop formal biosafety guidelines that applied to different groups in multiple locations. There was disagreement, however, regarding whether the Board should have an advisory role or provide mandatory oversight. We found that JOGL practiced ethical gatekeeping of projects that fell outside the limits defined by the Board. Our findings show that the DIY biology community recognized biosafety issues and tried to build infrastructure to facilitate the safe conduct of research.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1057/s41292-023-00301-2.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-22"},"PeriodicalIF":1.3,"publicationDate":"2023-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10042665/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9717169","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/s41292-023-00300-3
Riikka Homanen, Mianna Meskus
{"title":"Population anxieties in constituting Nordic welfare state futures: affective biopolitics in the age of environmental crises","authors":"Riikka Homanen, Mianna Meskus","doi":"10.1057/s41292-023-00300-3","DOIUrl":"https://doi.org/10.1057/s41292-023-00300-3","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-27"},"PeriodicalIF":1.6,"publicationDate":"2023-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48310832","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 : 2023-03-28DOI: 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}