BiosocietiesPub Date : 2022-04-12DOI: 10.1057/s41292-022-00276-6
Amelia Fiske, Alexander Degelsegger-Márquez, Brigitte Marsteurer, Barbara Prainsack
{"title":"Value-creation in the health data domain: a typology of what health data help us do.","authors":"Amelia Fiske, Alexander Degelsegger-Márquez, Brigitte Marsteurer, Barbara Prainsack","doi":"10.1057/s41292-022-00276-6","DOIUrl":"10.1057/s41292-022-00276-6","url":null,"abstract":"<p><p>It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-25"},"PeriodicalIF":1.6,"publicationDate":"2022-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9002030/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45130289","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}
BiosocietiesPub Date : 2022-04-10DOI: 10.1057/s41292-022-00279-3
C. Horn
{"title":"Ectogenesis, inequality, and coercion: a reproductive justice-informed analysis of the impact of artificial wombs","authors":"C. Horn","doi":"10.1057/s41292-022-00279-3","DOIUrl":"https://doi.org/10.1057/s41292-022-00279-3","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"523 - 544"},"PeriodicalIF":1.6,"publicationDate":"2022-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42726525","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}
BiosocietiesPub Date : 2022-04-05DOI: 10.1057/s41292-022-00277-5
M. Davis, A. Schermuly, Anthony K. J. Smith, Christy E. Newman
{"title":"Diversity via datafication? Digital patient records and citizenship for sexuality and gender diverse people","authors":"M. Davis, A. Schermuly, Anthony K. J. Smith, Christy E. Newman","doi":"10.1057/s41292-022-00277-5","DOIUrl":"https://doi.org/10.1057/s41292-022-00277-5","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"451-472"},"PeriodicalIF":1.6,"publicationDate":"2022-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43787434","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}
BiosocietiesPub Date : 2022-04-04DOI: 10.1057/s41292-021-00265-1
Caitlin M. Macmillan
{"title":"Openness in donor conception families","authors":"Caitlin M. Macmillan","doi":"10.1057/s41292-021-00265-1","DOIUrl":"https://doi.org/10.1057/s41292-021-00265-1","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2022-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47089836","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}
BiosocietiesPub Date : 2022-03-11DOI: 10.1057/s41292-022-00273-9
Poyao Huang
{"title":"Sexual health as surplus: the marketization of PrEP in Taiwan","authors":"Poyao Huang","doi":"10.1057/s41292-022-00273-9","DOIUrl":"https://doi.org/10.1057/s41292-022-00273-9","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"410-428"},"PeriodicalIF":1.6,"publicationDate":"2022-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48515973","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}
BiosocietiesPub Date : 2022-03-08DOI: 10.1057/s41292-022-00271-x
A. Filipe
{"title":"The other face of medical globalization? Pharmaceutical data, prescribing trends, and the social localization of psychostimulants","authors":"A. Filipe","doi":"10.1057/s41292-022-00271-x","DOIUrl":"https://doi.org/10.1057/s41292-022-00271-x","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-23"},"PeriodicalIF":1.6,"publicationDate":"2022-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42194161","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}
BiosocietiesPub Date : 2022-03-08DOI: 10.1057/s41292-022-00274-8
Myriam Durocher
{"title":"‘Healthy’ for whom? ‘Healthy’ food’s effectivities, avocados, and the production of differentiated bodies","authors":"Myriam Durocher","doi":"10.1057/s41292-022-00274-8","DOIUrl":"https://doi.org/10.1057/s41292-022-00274-8","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"389-409"},"PeriodicalIF":1.6,"publicationDate":"2022-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41759902","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}
BiosocietiesPub Date : 2022-03-08DOI: 10.1057/s41292-022-00272-w
M. Smolka
{"title":"Making epistemic goods compatible: knowledge-making practices in a lifestyle intervention RCT on mindfulness and compassion meditation","authors":"M. Smolka","doi":"10.1057/s41292-022-00272-w","DOIUrl":"https://doi.org/10.1057/s41292-022-00272-w","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"359-388"},"PeriodicalIF":1.6,"publicationDate":"2022-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46495659","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}