Pub Date : 2022-12-14DOI: 10.1057/s41292-022-00291-7
S. Mulinari, Anna Bredström
{"title":"“Black race”, “Schwarze Hautfarbe”, “Origine africaine”, or “Etnia nera”? The absent presence of race in European pharmaceutical regulation","authors":"S. Mulinari, Anna Bredström","doi":"10.1057/s41292-022-00291-7","DOIUrl":"https://doi.org/10.1057/s41292-022-00291-7","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-12-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49633741","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 : 2022-12-01DOI: 10.1057/s41292-022-00290-8
Haiqing Yu
This article offers a critical analysis of China's health code system, a data-powered pandemic control and contact tracing system that supposedly subjects all individuals in the country to its panopticon control, a surveillance system that monitors and categorises the Chinese population into the healthy (green), the dubious (yellow), and the unhealthy (red). The article highlights the pretence of surveillance as care and the digital divide that normalises discrimination against the elderly and other digitally left-behind population. It also illustrates how, from policy making and technological design to user engagement, the health code system is implemented, optimised, and used in everyday life to meet the needs of the vulnerable population. The health code is better taken as a medium of adaptable and communicative process that can reset the relation between the system and the lifeworld. It is the process of interchange between the system and the lifeworld that deserves our critical attention.
{"title":"Living in the era of codes: a reflection on China's health code system.","authors":"Haiqing Yu","doi":"10.1057/s41292-022-00290-8","DOIUrl":"10.1057/s41292-022-00290-8","url":null,"abstract":"<p><p>This article offers a critical analysis of China's health code system, a data-powered pandemic control and contact tracing system that supposedly subjects all individuals in the country to its panopticon control, a surveillance system that monitors and categorises the Chinese population into the healthy (green), the dubious (yellow), and the unhealthy (red). The article highlights the pretence of surveillance as care and the digital divide that normalises discrimination against the elderly and other digitally left-behind population. It also illustrates how, from policy making and technological design to user engagement, the health code system is implemented, optimised, and used in everyday life to meet the needs of the vulnerable population. The health code is better taken as a medium of adaptable and communicative process that can reset the relation between the system and the lifeworld. It is the process of interchange between the system and the lifeworld that deserves our critical attention.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9713107/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35347589","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 : 2022-12-01Epub Date: 2021-07-03DOI: 10.1057/s41292-021-00239-3
Daphne Oluwaseun Martschenko
Sociogenomics examines the extent to which genetic differences between individuals relate to differences in social and economic behaviors and outcomes. The field evokes mixed reactions. For some, sociogenomics runs the risk of normalizing eugenic attitudes and legitimizing social inequalities. For others, sociogenomics brings the promise of more robust and nuanced understandings of human behavior. Regardless, a history of misuse and misapplication of genetics raises important questions about researchers' social responsibilities. This paper draws on semi-structured interviews with sociogenomics researchers who investigate intelligence and educational attainment. It does so to understand how researcher's motivations for engaging in a historically burdened field connect to their views on social responsibility and the challenges that come with it. In interviews, researchers highlighted the trade-off between engaging in socially contested research and the potential benefits their work poses to the social sciences and clinical research. They also highlighted the dilemmas of engaging with the public, including the existence of multiple publics. Finally, researchers elucidated uncertainties over what social responsibility is in practice and whether protecting against the misuse and misinterpretation of their research is wholly possible. This paper concludes by offering ways to address some of the challenges of social responsibility in the production of knowledge.
{"title":"\"The elephant in the room\": social responsibility in the production of sociogenomics research.","authors":"Daphne Oluwaseun Martschenko","doi":"10.1057/s41292-021-00239-3","DOIUrl":"10.1057/s41292-021-00239-3","url":null,"abstract":"<p><p>Sociogenomics examines the extent to which genetic differences between individuals relate to differences in social and economic behaviors and outcomes. The field evokes mixed reactions. For some, sociogenomics runs the risk of normalizing eugenic attitudes and legitimizing social inequalities. For others, sociogenomics brings the promise of more robust and nuanced understandings of human behavior. Regardless, a history of misuse and misapplication of genetics raises important questions about researchers' social responsibilities. This paper draws on semi-structured interviews with sociogenomics researchers who investigate intelligence and educational attainment. It does so to understand how researcher's motivations for engaging in a historically burdened field connect to their views on social responsibility and the challenges that come with it. In interviews, researchers highlighted the trade-off between engaging in socially contested research and the potential benefits their work poses to the social sciences and clinical research. They also highlighted the dilemmas of engaging with the public, including the existence of multiple publics. Finally, researchers elucidated uncertainties over what social responsibility is in practice and whether protecting against the misuse and misinterpretation of their research is wholly possible. This paper concludes by offering ways to address some of the challenges of social responsibility in the production of knowledge.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9754080/pdf/nihms-1775552.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10400989","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 : 2022-10-19DOI: 10.1057/s41292-022-00284-6
Sanghamitra Das
{"title":"Indentured clinical labor? An indigenist standpoint view of ‘forced surrogacy’ and reproductive governance in India","authors":"Sanghamitra Das","doi":"10.1057/s41292-022-00284-6","DOIUrl":"https://doi.org/10.1057/s41292-022-00284-6","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42301871","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 : 2022-10-19DOI: 10.1057/s41292-022-00287-3
J. Guthman, Charlotte Biltekoff
{"title":"Agri-food tech’s building block: narrating protein, agnostic of source, in the face of crisis","authors":"J. Guthman, Charlotte Biltekoff","doi":"10.1057/s41292-022-00287-3","DOIUrl":"https://doi.org/10.1057/s41292-022-00287-3","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45924777","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 : 2022-10-19DOI: 10.1057/s41292-022-00286-4
Jessica P Cerdeña
Epigenetics has generated excitement over its potential to inform health disparities research by capturing the molecular signatures of social experiences. This paper highlights the concerns implied by these expectations of epigenetics research and discusses the possible ramifications of 'molecularizing' the forms of social suffering currently examined in epigenetics studies. Researchers working with oppressed populations-particularly racially marginalized groups-should further anticipate how their results might be interpreted to avoid fueling prejudiced claims of biological essentialism. Introducing the concept of 'epigenetic citizenship,' this paper considers the ways environmentally responsive methylation cues may be used in direct-to-consumer testing, healthcare, and biopolitical interactions. The conclusion addresses the future of social epigenetics research and the utility of an epigenetic citizenship framework.
{"title":"Epigenetic citizenship and political claims-making: the ethics of molecularizing structural racism.","authors":"Jessica P Cerdeña","doi":"10.1057/s41292-022-00286-4","DOIUrl":"10.1057/s41292-022-00286-4","url":null,"abstract":"<p><p>Epigenetics has generated excitement over its potential to inform health disparities research by capturing the molecular signatures of social experiences. This paper highlights the concerns implied by these expectations of epigenetics research and discusses the possible ramifications of 'molecularizing' the forms of social suffering currently examined in epigenetics studies. Researchers working with oppressed populations-particularly racially marginalized groups-should further anticipate how their results might be interpreted to avoid fueling prejudiced claims of biological essentialism. Introducing the concept of 'epigenetic citizenship,' this paper considers the ways environmentally responsive methylation cues may be used in direct-to-consumer testing, healthcare, and biopolitical interactions. The conclusion addresses the future of social epigenetics research and the utility of an epigenetic citizenship framework.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9579599/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9515484","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 : 2022-10-03DOI: 10.1057/s41292-022-00283-7
Makoto Nishi
Over the last decades, there has been a worldwide rise of new technologies for controlling the HIV epidemic by expanding antiretroviral medicines. This article examines how the pharmaceutical-driven model of public health, which emerged as a byproduct of antiretroviral treatment (ART) scale-up in Ethiopia, interplayed with local forms of actions, engagements, and voices through which suffering inflicted by the epidemic was cared for. Through the eyes of an Ethiopian woman with HIV, this article illustrates how the increasing emphasis on ART facilitated the defunding of some community-based care practices. Moreover, it rendered the realities of precarious life with HIV invisible in the landscape of therapeutic citizenship. However, for Ethiopians, ART scale-up unfolded amid multiple forms of HIV care practices and relationships that endured stigma, alienation, and uncertainty before and after ART. The experience of surviving the HIV epidemic in Ethiopia provides a vital premise upon which claims of meaningful care are made, and ways to otherwise develop healthcare actions and engagements are sought.
{"title":"Care during ART scale-up: surviving the HIV epidemic in Ethiopia.","authors":"Makoto Nishi","doi":"10.1057/s41292-022-00283-7","DOIUrl":"10.1057/s41292-022-00283-7","url":null,"abstract":"<p><p>Over the last decades, there has been a worldwide rise of new technologies for controlling the HIV epidemic by expanding antiretroviral medicines. This article examines how the pharmaceutical-driven model of public health, which emerged as a byproduct of antiretroviral treatment (ART) scale-up in Ethiopia, interplayed with local forms of actions, engagements, and voices through which suffering inflicted by the epidemic was cared for. Through the eyes of an Ethiopian woman with HIV, this article illustrates how the increasing emphasis on ART facilitated the defunding of some community-based care practices. Moreover, it rendered the realities of precarious life with HIV invisible in the landscape of therapeutic citizenship. However, for Ethiopians, ART scale-up unfolded amid multiple forms of HIV care practices and relationships that endured stigma, alienation, and uncertainty before and after ART. The experience of surviving the HIV epidemic in Ethiopia provides a vital premise upon which claims of meaningful care are made, and ways to otherwise develop healthcare actions and engagements are sought.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9527715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33495106","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 : 2022-09-24DOI: 10.1057/s41292-022-00285-5
Esca van Blarikom, N. Fudge, D. Swinglehurst
{"title":"The emergence of multimorbidity as a matter of concern: a critical review","authors":"Esca van Blarikom, N. Fudge, D. Swinglehurst","doi":"10.1057/s41292-022-00285-5","DOIUrl":"https://doi.org/10.1057/s41292-022-00285-5","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45298843","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 : 2022-06-01DOI: 10.1057/s41292-020-00208-2
Christi J Guerrini, Meredith Trejo, Isabel Canfield, Amy L McGuire
Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals that they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity.
{"title":"Core values of genomic citizen science: results from a qualitative interview study.","authors":"Christi J Guerrini, Meredith Trejo, Isabel Canfield, Amy L McGuire","doi":"10.1057/s41292-020-00208-2","DOIUrl":"https://doi.org/10.1057/s41292-020-00208-2","url":null,"abstract":"<p><p>Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals that they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1057/s41292-020-00208-2","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9557073","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 : 2022-04-22DOI: 10.1057/s41292-022-00278-4
Bianca Jansky, Henriette Langstrup
The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.
{"title":"Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care.","authors":"Bianca Jansky, Henriette Langstrup","doi":"10.1057/s41292-022-00278-4","DOIUrl":"10.1057/s41292-022-00278-4","url":null,"abstract":"<p><p>The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their \"chronic living\" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":null,"pages":null},"PeriodicalIF":1.6,"publicationDate":"2022-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024066/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10621514","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}