Ine Van Hoyweghen | KU Leuven (original) (raw)
Books by Ine Van Hoyweghen
KVAB, 2023
Maarten Inghels (former city poet of Antwerp) presents his "poem booth" during the symposium: it ... more Maarten Inghels (former city poet of Antwerp) presents his "poem booth" during the symposium: it involves an experiment with generative AI, raising relevant issues in front of the audience. Language: Dutch. Maarten Inghels made his debut in 2008 with Tumult in the Sandwich series, edited by author Gerrit Komrij, and has since developed into an original artist, poet and writer. His novel Het mirakel van België, about his experiences with the world's greatest master swindler, was published in 2021. His book Contact connected poetry, visual work and action. From 2016 to 2018, he was Antwerp's city poet. A preview: Kus elkaar, verliefden, onder de kruin, Gegiechel galmt, vanuit de massa tuin. Plots, een snorvogel schiet voorbij! Herhaalt dit lied, dit zoete vrij. AI Musicking Andrew Claes and Frascati Symphonic provide a live performance of a new composition generated with AI and played by classical musicians. Andrew Claes is a professional saxophone player and composer associated with the Royal Conservatory in Antwerp. One of his main projects AI Musicking is aimed at exploring innovative approaches to musical co-creation through machine learning. Frascati Symphonic is a collection of musicians from Leuven. They are well known for their performances of the classical repertoire, ranging from symphonic works and operas to chamber music. The orchestra is led by conductor Kris Stroobants. The musicians participating in a brief performance were Hrayr Karapetyan (violin), Delejan Breynaert (violin) and Shuya Tanaka (cello).
Filosofie Tijdschrift, 2021
Filosofie-Tijdschrift biedt de lezer in elk nummer gedegen artikelen over verschillende onderwerp... more Filosofie-Tijdschrift biedt de lezer in elk nummer gedegen artikelen over verschillende onderwerpen met een filosofische inslag. Geregeld besteedt Filosofie-Tijdschrift aandacht aan een bekend filosoof of aan een actueel thema. Behalve deze artikelen-meestal thematisch geordend-heeft Filosofie-Tijdschrift de volgende vaste rubrieken: Comparatieve filosofie, Filosofie van wetenschap en techniek, Filosofie van politiek en cultuur en Filosofie en onderwijs. Daarnaast besteedt Filosofie-Tijdschrift ruimte aan berichten, boekbesprekingen en attenderingen.
Global Health is increasingly becoming a political, professional, and academic field of its own. ... more Global Health is increasingly becoming a political, professional, and academic field of its own. New players and cross-border collaborations have emerged to solve some of the world's most daunting public health problems, resulting in a multitude of global health care innovations across different institutional and cultural settings. With these innovations often comes the underlying assumption that we can find universal solutions if only we can overcome the challenges posed by different contexts. Making Global Health Care Innovations Work is the first book that studies this tension between universal and localized health care innovations and provides a diverse account on how global health care innovations are and can be connected to local practices. Using approaches from science and technology studies (STS), innovation studies, development studies, and public health, the book contributes to the discussion on standardization and localization of global health innovations.
Papers by Ine Van Hoyweghen
Tijdschrift voor Sociologie, Dec 1, 2017
Dit theoretisch onderzoeksartikel laat nieuw licht schijnen op de implicaties van het 'na... more Dit theoretisch onderzoeksartikel laat nieuw licht schijnen op de implicaties van het 'nature/nurture'-debat voor ons begrip van verantwoordelijkheid en solidariteit. Meer specifiek bekijken we hoe nieuwe (epi-)genetische informatie ons kan aanzetten om deze noties te herdenken. Hiervoor treden we in dialoog met een belangrijk boek van Evelyn Fox Keller: The 'Mirage of a Space between Nature and Nurture'. Waar wetenschappers zich de vraag stellen of het onderscheid tussen 'nature' en 'nurture' nog houdbaar is in het licht van recente bevindingen, gaat Kellers uitgangspunt al een stap verder. Aangezien het 'nature/nurture'-onderscheid niet langer opgaat, waarom blijven we dan toch nog in die termen denken? Dit lijkt ons sociologisch een erg belangrijke vraag. We zullen echter Kellers antwoord betwisten en hiervoor moeten we de morele en politieke insteek van de 'nature/nurture'-opdeling bespreken. We tonen met een aantal voorbeelden uit het verzekeringswezen, de gezondheidszorg en het asielbeleid aan dat bepaalde maatschappelijke instellingen impliciet op de 'nature/nurture'-tweespalt steunen als specifiek normatief en metafysisch kader om te beslissen aan wie solidariteit het meest toekomt. Vervolgens argumenteren we dat denken 'voorbij nature en nurture' impliceert dat we eveneens opnieuw moeten nadenken over verantwoordelijkheid en solidariteit in de samenleving, inclusief binnen de wetenschappen zelf. We geven hierbij voorbeelden uit de epigenetica. In lijn met denkers als Bruno Latour, Isabelle Stengers en Donna Harraway karakteriseren we deze stap 'voorbij nature en nurture' als een speculatieve en kosmopolitieke uitdaging. Het artikel ontwikkelt aldus een ontologisch-politiek of 'kosmopolitiek' perspectief op vraagstukken inzake verantwoordelijkheid en solidariteit in het post-genomische tijdperk.
本稿では,福島原子力発電所事故後の市民科学に関する日本—ベルギー共同研究プロジェクト(2017―2019)の経験を振り返る.この社会科学研究プロジェクトでは,市民主導のデータ駆動型放射線モニタリ... more 本稿では,福島原子力発電所事故後の市民科学に関する日本—ベルギー共同研究プロジェクト(2017―2019)の経験を振り返る.この社会科学研究プロジェクトでは,市民主導のデータ駆動型放射線モニタリングに対し,公的機関や科学研究コミュニティがどのように反応したかを探究した.質的な(自己)民族誌手法を用い,関係者,特に市民科学者と,放射線防護に関する職業科学者との実りある協力関係を探り,その中で浮かび上がってきた可能性と課題に光を当てる.我々自身を含めた関係者間の関係性は,放射能汚染や環境問題のガバナンスの進退を左右する.このことから,関係者間の相互作用をどのように展開し,交渉し,実行するかについて,あらゆる関係者間での,より再帰的な対話を支持する. In this article, we reflect on our experiences in a joint Japanese-Belgian social science research project on citizen science after Fukushima (2017―2019), which sought to identify how public authorities and scientific research communities respond to citizen-led, data-driven radiation monitoring practices. Using qualitative (auto)ethnographic methods, we shed light on opportunities and challenges that emerged in developing possible fruitful collaboration pathways with project stakeholders, particularly citizen scientists and formally-trained scientists working in radiological protection. We argue for more reflexive dialogue among all about how interactions betwee...
Drop-on-demand (DOD) bioprinting has attracted huge attention for numerous biological application... more Drop-on-demand (DOD) bioprinting has attracted huge attention for numerous biological applications due to its precise control over material volume and deposition pattern in a contactless printing approach. 3D bioprinting is still an emerging field and more work is required to improve the viability and homogeneity of printed cells during the printing process. Here, a general purpose bio-ink was developed using polyvinylpyrrolidone (PVP) macromolecules. Different PVP-based bio-inks (0%-3% w/v) were prepared and evaluated for their printability; the short-term and long-term viability of the printed cells were first investigated. The Z value of a bio-ink determines its printability; it is the inverse of the Ohnesorge number (Oh), which is the ratio between the Reynolds number and a square root of the Weber number, and is independent of the bio-ink velocity. The viability of printed cells is dependent on the Z values of the bio-inks; the results indicated that the cells can be printed without any significant impairment using a bio-ink with a threshold Z value of ≤9.30 (2% and 2.5% w/v). Next, the cell output was evaluated over a period of 30 min. The results indicated that PVP molecules mitigate the cell adhesion and sedimentation during the printing process; the 2.5% w/v PVP bio-ink demonstrated the most consistent cell output over a period of 30 min. Hence, PVP macromolecules can play a critical role in improving the cell viability and homogeneity during the bioprinting process.
Genetics in Medicine, 2021
PURPOSE Findings from genomic sequencing can have important implications for patients and family ... more PURPOSE Findings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the disclosure of genetic information to relatives, it is unclear how health-care professionals (HCPs) should balance their responsibilities toward patients and their family members and whether breaches in confidentiality are warranted. METHODS We conducted a systematic review of normative documents to understand how HCPs should discuss and facilitate family disclosure, and what should be done in cases where the patient does not consent to disclosure. RESULTS We analyzed 35 documents from advisory committees at the national, European, and international level. We identified discrepancies regarding the recommended role of HCPs in disclosure. While almost all normative documents supported the disclosure of genetic information without patient consent in limited conditions, the conditions for disclosure were often not well defined. Documents provided varying degrees of information regarding what actions HCPs must take in such situations. CONCLUSION Our findings present concerns regarding the ability of these normative documents to guide HCPs' decision making around the disclosure of genetic information to family members. Clearer guidance outlining the responsibilities and acceptability of disclosure is necessary to facilitate disclosure of genetic information to family members.
Genetics in Medicine, 2021
PURPOSE Findings from genomic sequencing can have important implications for patients and family ... more PURPOSE Findings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the disclosure of genetic information to relatives, it is unclear how health-care professionals (HCPs) should balance their responsibilities toward patients and their family members and whether breaches in confidentiality are warranted. METHODS We conducted a systematic review of normative documents to understand how HCPs should discuss and facilitate family disclosure, and what should be done in cases where the patient does not consent to disclosure. RESULTS We analyzed 35 documents from advisory committees at the national, European, and international level. We identified discrepancies regarding the recommended role of HCPs in disclosure. While almost all normative documents supported the disclosure of genetic information without patient consent in limited conditions, the conditions for disclosure were often not well defined. Documents provided varying degrees of information regarding what actions HCPs must take in such situations. CONCLUSION Our findings present concerns regarding the ability of these normative documents to guide HCPs' decision making around the disclosure of genetic information to family members. Clearer guidance outlining the responsibilities and acceptability of disclosure is necessary to facilitate disclosure of genetic information to family members.
Big Data & Society, 2020
The adoption of Big Data analytics (BDA) in insurance has proved controversial but there has been... more The adoption of Big Data analytics (BDA) in insurance has proved controversial but there has been little analysis specifying how insurance practices are changing. Is insurance passively subject to the forces of disruptive innovation, moving away from the pooling of risk towards its personalisation or individualisation, and what might that mean in practice? This special theme situates disruptive innovations, particularly the experimental practices of behaviour-based personalisation, in the context of the practice and regulation of contemporary insurance. Our contributors argue that behaviour-based personalisation in insurance has different and broader implications than have yet been appreciated. BDAs are changing how insurance governs risk; how it knows, classifies, manages, prices and sells it, in ways that are more opaque and more extensive than the black boxes of in-car telematics.
Palgrave Communications, 2020
This study illustrates how citizen-driven radiation monitoring has emerged in post-Fukushima Japa... more This study illustrates how citizen-driven radiation monitoring has emerged in post-Fukushima Japan, where citizens generate their own radiation data and measurement devices to provide public with actionable data about their environments. Drawing on ethnographic fieldwork in and around Fukushima Prefecture, it highlights the multifaceted character of these bottom-up, citizen-led efforts, contrasting these initiatives with the emergence of “citizen participatory” science policy discourses in Japan. Recognizing the contested nature of citizenship in Japan and in the nuclear arena, the article considers how terms and definitions shape the participation of citizens and other stakeholders (local communities, public authorities, regulators, and professional scientists) in science and technology in culturally and historically specific ways. It builds on these observations to open up new spaces of expertise, which engage all stakeholders through social-scientific intervention.
Big Data & Society, 2020
Insurance markets have always relied on large amounts of data to assess risks and price their pro... more Insurance markets have always relied on large amounts of data to assess risks and price their products. New data-driven technologies, including wearable health trackers, smartphone sensors, predictive modelling and Big Data analytics, are challenging these established practices. In tracking insurance clients' behaviour, these innovations promise the reduction of insurance costs and more accurate pricing through the personalisation of premiums and products. Building on insights from the sociology of markets and Science and Technology Studies (STS), this article investigates the role of economic experimentation in the making of data-driven personalisation markets in insurance. We document a case study of a car insurance experiment, launched by a Belgian direct insurance company in 2016 to set up an experiment of tracking driving style behavioural data of over 5000 participants over a one-year period. Based on interviews and document analysis, we outline how this in vivo experiment was setup , which interventions and manipulations were imposed to make the experiment successful, and how the study was evaluated by the actors. Using JL Austin's distinction between happy and unhappy statements, we argue how the experiment, despite its failure not to provide the desired evidence (on the link between driving style behaviour and accident losses), could be considered a 'happy' event. We conclude by highlighting the role of economic experiments 'in the wild' for the making of future markets of data-driven personalisation.
Journal of Cultural Economy, 2018
William James (1919) characterises hypotheses as either live or dead. A hypothesis is live when i... more William James (1919) characterises hypotheses as either live or dead. A hypothesis is live when it is taken into account as a 'real possibility'. We follow James' suggestion to not attribute intrinsic properties to hypotheses, but rather investigate how they came into being and look at the effects they generate. Expectations of digital technologies are a topic of vivid debate in the insurance industry. Before these expectations can become 'live', they have, in the first place, to be generated by market devices. We investigate how the reinsurance blogpost platform Open Minds functions as an 'expectation generation device' on the future of insurance markets. Combining Beckert's work on the role of fictional expectations with the pragmatist turn in sociology of markets, we propose to study 'expectation generation devices', provoking expectations on economic markets. In our empirical analysis, we demonstrate the explicit fictional character of the Open Minds contributions, and analyse how a contained space of openness is generated to provoke expectations. We demonstrate how Open Minds can become live through circulation to other expectation generation sites in the insurance industry and beyond. We conclude by reflecting on the importance of expectation generation devices as a particular type of market devices.
Sociologia Ruralis, 2018
The purpose of this article is to provide an understanding of how different countries formulate a... more The purpose of this article is to provide an understanding of how different countries formulate and regulate antibiotic use in animals raised for human consumption. A comparative case study was undertaken, analysing historical documents from the 1950s to the 1990s from the UK, the first country to produce a scientific report on the public health risks of agricultural antibiotic use; and Sweden, the first country to produce legislation on the growth promotor use of antibiotics in food animals. Sheila Jasanoff's concepts of 'co-production' and 'political cultures' have been used to explore how both countries used different styles of scientific reasoning and justification of the risks of agricultural antibiotic use. It will be argued that national dynamics between policy, science and public knowledges co-produced different risk classifications and patterns of agricultural antibiotic use between both countries. UK's political culture used 'expert committees' to remove the issue from public debate and to inform agricultural antibiotic policies. In contrast, the Swedish 'consensus-oriented' political culture made concerns related to agricultural antibiotic use into a cooperative debate that included multiple discourses. Understanding how national policies, science and public knowledges interact with the risks related to agricultural antibiotic use can provide valuable insights in understanding and addressing countries agricultural use of antibiotics. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Big Data & Society, 2019
In this paper, we discuss how access to health-related data by private insurers, other than affec... more In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially harmful effects on the d...
KVAB, 2023
Maarten Inghels (former city poet of Antwerp) presents his "poem booth" during the symposium: it ... more Maarten Inghels (former city poet of Antwerp) presents his "poem booth" during the symposium: it involves an experiment with generative AI, raising relevant issues in front of the audience. Language: Dutch. Maarten Inghels made his debut in 2008 with Tumult in the Sandwich series, edited by author Gerrit Komrij, and has since developed into an original artist, poet and writer. His novel Het mirakel van België, about his experiences with the world's greatest master swindler, was published in 2021. His book Contact connected poetry, visual work and action. From 2016 to 2018, he was Antwerp's city poet. A preview: Kus elkaar, verliefden, onder de kruin, Gegiechel galmt, vanuit de massa tuin. Plots, een snorvogel schiet voorbij! Herhaalt dit lied, dit zoete vrij. AI Musicking Andrew Claes and Frascati Symphonic provide a live performance of a new composition generated with AI and played by classical musicians. Andrew Claes is a professional saxophone player and composer associated with the Royal Conservatory in Antwerp. One of his main projects AI Musicking is aimed at exploring innovative approaches to musical co-creation through machine learning. Frascati Symphonic is a collection of musicians from Leuven. They are well known for their performances of the classical repertoire, ranging from symphonic works and operas to chamber music. The orchestra is led by conductor Kris Stroobants. The musicians participating in a brief performance were Hrayr Karapetyan (violin), Delejan Breynaert (violin) and Shuya Tanaka (cello).
Filosofie Tijdschrift, 2021
Filosofie-Tijdschrift biedt de lezer in elk nummer gedegen artikelen over verschillende onderwerp... more Filosofie-Tijdschrift biedt de lezer in elk nummer gedegen artikelen over verschillende onderwerpen met een filosofische inslag. Geregeld besteedt Filosofie-Tijdschrift aandacht aan een bekend filosoof of aan een actueel thema. Behalve deze artikelen-meestal thematisch geordend-heeft Filosofie-Tijdschrift de volgende vaste rubrieken: Comparatieve filosofie, Filosofie van wetenschap en techniek, Filosofie van politiek en cultuur en Filosofie en onderwijs. Daarnaast besteedt Filosofie-Tijdschrift ruimte aan berichten, boekbesprekingen en attenderingen.
Global Health is increasingly becoming a political, professional, and academic field of its own. ... more Global Health is increasingly becoming a political, professional, and academic field of its own. New players and cross-border collaborations have emerged to solve some of the world's most daunting public health problems, resulting in a multitude of global health care innovations across different institutional and cultural settings. With these innovations often comes the underlying assumption that we can find universal solutions if only we can overcome the challenges posed by different contexts. Making Global Health Care Innovations Work is the first book that studies this tension between universal and localized health care innovations and provides a diverse account on how global health care innovations are and can be connected to local practices. Using approaches from science and technology studies (STS), innovation studies, development studies, and public health, the book contributes to the discussion on standardization and localization of global health innovations.
Tijdschrift voor Sociologie, Dec 1, 2017
Dit theoretisch onderzoeksartikel laat nieuw licht schijnen op de implicaties van het 'na... more Dit theoretisch onderzoeksartikel laat nieuw licht schijnen op de implicaties van het 'nature/nurture'-debat voor ons begrip van verantwoordelijkheid en solidariteit. Meer specifiek bekijken we hoe nieuwe (epi-)genetische informatie ons kan aanzetten om deze noties te herdenken. Hiervoor treden we in dialoog met een belangrijk boek van Evelyn Fox Keller: The 'Mirage of a Space between Nature and Nurture'. Waar wetenschappers zich de vraag stellen of het onderscheid tussen 'nature' en 'nurture' nog houdbaar is in het licht van recente bevindingen, gaat Kellers uitgangspunt al een stap verder. Aangezien het 'nature/nurture'-onderscheid niet langer opgaat, waarom blijven we dan toch nog in die termen denken? Dit lijkt ons sociologisch een erg belangrijke vraag. We zullen echter Kellers antwoord betwisten en hiervoor moeten we de morele en politieke insteek van de 'nature/nurture'-opdeling bespreken. We tonen met een aantal voorbeelden uit het verzekeringswezen, de gezondheidszorg en het asielbeleid aan dat bepaalde maatschappelijke instellingen impliciet op de 'nature/nurture'-tweespalt steunen als specifiek normatief en metafysisch kader om te beslissen aan wie solidariteit het meest toekomt. Vervolgens argumenteren we dat denken 'voorbij nature en nurture' impliceert dat we eveneens opnieuw moeten nadenken over verantwoordelijkheid en solidariteit in de samenleving, inclusief binnen de wetenschappen zelf. We geven hierbij voorbeelden uit de epigenetica. In lijn met denkers als Bruno Latour, Isabelle Stengers en Donna Harraway karakteriseren we deze stap 'voorbij nature en nurture' als een speculatieve en kosmopolitieke uitdaging. Het artikel ontwikkelt aldus een ontologisch-politiek of 'kosmopolitiek' perspectief op vraagstukken inzake verantwoordelijkheid en solidariteit in het post-genomische tijdperk.
本稿では,福島原子力発電所事故後の市民科学に関する日本—ベルギー共同研究プロジェクト(2017―2019)の経験を振り返る.この社会科学研究プロジェクトでは,市民主導のデータ駆動型放射線モニタリ... more 本稿では,福島原子力発電所事故後の市民科学に関する日本—ベルギー共同研究プロジェクト(2017―2019)の経験を振り返る.この社会科学研究プロジェクトでは,市民主導のデータ駆動型放射線モニタリングに対し,公的機関や科学研究コミュニティがどのように反応したかを探究した.質的な(自己)民族誌手法を用い,関係者,特に市民科学者と,放射線防護に関する職業科学者との実りある協力関係を探り,その中で浮かび上がってきた可能性と課題に光を当てる.我々自身を含めた関係者間の関係性は,放射能汚染や環境問題のガバナンスの進退を左右する.このことから,関係者間の相互作用をどのように展開し,交渉し,実行するかについて,あらゆる関係者間での,より再帰的な対話を支持する. In this article, we reflect on our experiences in a joint Japanese-Belgian social science research project on citizen science after Fukushima (2017―2019), which sought to identify how public authorities and scientific research communities respond to citizen-led, data-driven radiation monitoring practices. Using qualitative (auto)ethnographic methods, we shed light on opportunities and challenges that emerged in developing possible fruitful collaboration pathways with project stakeholders, particularly citizen scientists and formally-trained scientists working in radiological protection. We argue for more reflexive dialogue among all about how interactions betwee...
Drop-on-demand (DOD) bioprinting has attracted huge attention for numerous biological application... more Drop-on-demand (DOD) bioprinting has attracted huge attention for numerous biological applications due to its precise control over material volume and deposition pattern in a contactless printing approach. 3D bioprinting is still an emerging field and more work is required to improve the viability and homogeneity of printed cells during the printing process. Here, a general purpose bio-ink was developed using polyvinylpyrrolidone (PVP) macromolecules. Different PVP-based bio-inks (0%-3% w/v) were prepared and evaluated for their printability; the short-term and long-term viability of the printed cells were first investigated. The Z value of a bio-ink determines its printability; it is the inverse of the Ohnesorge number (Oh), which is the ratio between the Reynolds number and a square root of the Weber number, and is independent of the bio-ink velocity. The viability of printed cells is dependent on the Z values of the bio-inks; the results indicated that the cells can be printed without any significant impairment using a bio-ink with a threshold Z value of ≤9.30 (2% and 2.5% w/v). Next, the cell output was evaluated over a period of 30 min. The results indicated that PVP molecules mitigate the cell adhesion and sedimentation during the printing process; the 2.5% w/v PVP bio-ink demonstrated the most consistent cell output over a period of 30 min. Hence, PVP macromolecules can play a critical role in improving the cell viability and homogeneity during the bioprinting process.
Genetics in Medicine, 2021
PURPOSE Findings from genomic sequencing can have important implications for patients and family ... more PURPOSE Findings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the disclosure of genetic information to relatives, it is unclear how health-care professionals (HCPs) should balance their responsibilities toward patients and their family members and whether breaches in confidentiality are warranted. METHODS We conducted a systematic review of normative documents to understand how HCPs should discuss and facilitate family disclosure, and what should be done in cases where the patient does not consent to disclosure. RESULTS We analyzed 35 documents from advisory committees at the national, European, and international level. We identified discrepancies regarding the recommended role of HCPs in disclosure. While almost all normative documents supported the disclosure of genetic information without patient consent in limited conditions, the conditions for disclosure were often not well defined. Documents provided varying degrees of information regarding what actions HCPs must take in such situations. CONCLUSION Our findings present concerns regarding the ability of these normative documents to guide HCPs' decision making around the disclosure of genetic information to family members. Clearer guidance outlining the responsibilities and acceptability of disclosure is necessary to facilitate disclosure of genetic information to family members.
Genetics in Medicine, 2021
PURPOSE Findings from genomic sequencing can have important implications for patients and family ... more PURPOSE Findings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the disclosure of genetic information to relatives, it is unclear how health-care professionals (HCPs) should balance their responsibilities toward patients and their family members and whether breaches in confidentiality are warranted. METHODS We conducted a systematic review of normative documents to understand how HCPs should discuss and facilitate family disclosure, and what should be done in cases where the patient does not consent to disclosure. RESULTS We analyzed 35 documents from advisory committees at the national, European, and international level. We identified discrepancies regarding the recommended role of HCPs in disclosure. While almost all normative documents supported the disclosure of genetic information without patient consent in limited conditions, the conditions for disclosure were often not well defined. Documents provided varying degrees of information regarding what actions HCPs must take in such situations. CONCLUSION Our findings present concerns regarding the ability of these normative documents to guide HCPs' decision making around the disclosure of genetic information to family members. Clearer guidance outlining the responsibilities and acceptability of disclosure is necessary to facilitate disclosure of genetic information to family members.
Big Data & Society, 2020
The adoption of Big Data analytics (BDA) in insurance has proved controversial but there has been... more The adoption of Big Data analytics (BDA) in insurance has proved controversial but there has been little analysis specifying how insurance practices are changing. Is insurance passively subject to the forces of disruptive innovation, moving away from the pooling of risk towards its personalisation or individualisation, and what might that mean in practice? This special theme situates disruptive innovations, particularly the experimental practices of behaviour-based personalisation, in the context of the practice and regulation of contemporary insurance. Our contributors argue that behaviour-based personalisation in insurance has different and broader implications than have yet been appreciated. BDAs are changing how insurance governs risk; how it knows, classifies, manages, prices and sells it, in ways that are more opaque and more extensive than the black boxes of in-car telematics.
Palgrave Communications, 2020
This study illustrates how citizen-driven radiation monitoring has emerged in post-Fukushima Japa... more This study illustrates how citizen-driven radiation monitoring has emerged in post-Fukushima Japan, where citizens generate their own radiation data and measurement devices to provide public with actionable data about their environments. Drawing on ethnographic fieldwork in and around Fukushima Prefecture, it highlights the multifaceted character of these bottom-up, citizen-led efforts, contrasting these initiatives with the emergence of “citizen participatory” science policy discourses in Japan. Recognizing the contested nature of citizenship in Japan and in the nuclear arena, the article considers how terms and definitions shape the participation of citizens and other stakeholders (local communities, public authorities, regulators, and professional scientists) in science and technology in culturally and historically specific ways. It builds on these observations to open up new spaces of expertise, which engage all stakeholders through social-scientific intervention.
Big Data & Society, 2020
Insurance markets have always relied on large amounts of data to assess risks and price their pro... more Insurance markets have always relied on large amounts of data to assess risks and price their products. New data-driven technologies, including wearable health trackers, smartphone sensors, predictive modelling and Big Data analytics, are challenging these established practices. In tracking insurance clients' behaviour, these innovations promise the reduction of insurance costs and more accurate pricing through the personalisation of premiums and products. Building on insights from the sociology of markets and Science and Technology Studies (STS), this article investigates the role of economic experimentation in the making of data-driven personalisation markets in insurance. We document a case study of a car insurance experiment, launched by a Belgian direct insurance company in 2016 to set up an experiment of tracking driving style behavioural data of over 5000 participants over a one-year period. Based on interviews and document analysis, we outline how this in vivo experiment was setup , which interventions and manipulations were imposed to make the experiment successful, and how the study was evaluated by the actors. Using JL Austin's distinction between happy and unhappy statements, we argue how the experiment, despite its failure not to provide the desired evidence (on the link between driving style behaviour and accident losses), could be considered a 'happy' event. We conclude by highlighting the role of economic experiments 'in the wild' for the making of future markets of data-driven personalisation.
Journal of Cultural Economy, 2018
William James (1919) characterises hypotheses as either live or dead. A hypothesis is live when i... more William James (1919) characterises hypotheses as either live or dead. A hypothesis is live when it is taken into account as a 'real possibility'. We follow James' suggestion to not attribute intrinsic properties to hypotheses, but rather investigate how they came into being and look at the effects they generate. Expectations of digital technologies are a topic of vivid debate in the insurance industry. Before these expectations can become 'live', they have, in the first place, to be generated by market devices. We investigate how the reinsurance blogpost platform Open Minds functions as an 'expectation generation device' on the future of insurance markets. Combining Beckert's work on the role of fictional expectations with the pragmatist turn in sociology of markets, we propose to study 'expectation generation devices', provoking expectations on economic markets. In our empirical analysis, we demonstrate the explicit fictional character of the Open Minds contributions, and analyse how a contained space of openness is generated to provoke expectations. We demonstrate how Open Minds can become live through circulation to other expectation generation sites in the insurance industry and beyond. We conclude by reflecting on the importance of expectation generation devices as a particular type of market devices.
Sociologia Ruralis, 2018
The purpose of this article is to provide an understanding of how different countries formulate a... more The purpose of this article is to provide an understanding of how different countries formulate and regulate antibiotic use in animals raised for human consumption. A comparative case study was undertaken, analysing historical documents from the 1950s to the 1990s from the UK, the first country to produce a scientific report on the public health risks of agricultural antibiotic use; and Sweden, the first country to produce legislation on the growth promotor use of antibiotics in food animals. Sheila Jasanoff's concepts of 'co-production' and 'political cultures' have been used to explore how both countries used different styles of scientific reasoning and justification of the risks of agricultural antibiotic use. It will be argued that national dynamics between policy, science and public knowledges co-produced different risk classifications and patterns of agricultural antibiotic use between both countries. UK's political culture used 'expert committees' to remove the issue from public debate and to inform agricultural antibiotic policies. In contrast, the Swedish 'consensus-oriented' political culture made concerns related to agricultural antibiotic use into a cooperative debate that included multiple discourses. Understanding how national policies, science and public knowledges interact with the risks related to agricultural antibiotic use can provide valuable insights in understanding and addressing countries agricultural use of antibiotics. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Big Data & Society, 2019
In this paper, we discuss how access to health-related data by private insurers, other than affec... more In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially harmful effects on the d...
Frontiers in genetics, 2018
In this article, we ask to what extent the specific characteristics of epigenetics may affect the... more In this article, we ask to what extent the specific characteristics of epigenetics may affect the type of questions one can ask about human society. We pay particular attention to the way epigenetic research stirs debate about normative and moral issues. Are these issues implied by scientific evidence as an outcome of research? Or do moral and normative issues also shape how research is done and which problems it addresses? We briefly explore these questions through examples and discussions in (social-) scientific literature. In the final section, we propose an additional dimension and a refocusing of attention from issues of scientific evidence alone (asking what kind of evidence epigenetics produces and how it does so) to a broader picture on epigenetics as a mode of attention that encourages relational and process-oriented thinking with entities, values and scales that may not yet fit within conventional problem-frames that inform research funding and policy-making. We argue that...
The Routledge Handbook of the Welfare State, 2008
Life Sciences, Society and Policy, 2015
In European science and technology policy, various styles have been developed and institutionalis... more In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to assess the potential of the recently established governance approach of 'Responsible Research and Innovation' (RRI). Based on this analysis, we reflect on the current shaping of RRI in terms of 'doing governance'.
Journal of Cultural Economy
When one reads newspapers or watches TV nowadays, one is struck by the amount of news on the econ... more When one reads newspapers or watches TV nowadays, one is struck by the amount of news on the economy and, especially, the portrayal of the state of economy as increasingly fragile and uncertain. At least since the beginning of the 2007 and 2008 financial crisis, the media have constantly bombarded their audiences with stories about how bleak and, perhaps more importantly, unpredictable the economic future seems. Economic news has become ever more central to the way in which we understand our world. In combination with its somber tone, this also creates certain myopia for the observer. It is easy to forget that uncertainty has been characteristic of economic life as long as there has been something called ‘economic life’. What is new, however, is the pervasive economization of uncertainty. More precisely, it is only recently that uncertainty in itself has become a fundamental component of economic life. A crucial role in this is played by the technical means with which uncertainties are managed. When uncertainty is standardized, homogenized and made calculable, it can be given a price and it can be bought and sold. Not only has it been economized, but also it has been made into an essential commodity of the current capitalism. In the context of this special issue, the word ‘economization’ is important in both of its two meanings. First, in everyday usage the term refers to the efficient use of resources. This points to the importance of studying the ways in which life’s complexity is trimmed down with equipment designed to reduce uncertainty, including insurance policies, health care arrangements, pensions and saving plans. The second meaning of the term ‘economization’ is more specific. It derives from Çalişkan and Callon’s (2009, 2010) recent reframing of the project of studying ‘performativity’ in the creation of markets. Here, ‘economization’ refers to the way in which diverse practices are rendered as ‘economic’. In this usage ‘economization’ does not refer only to orthodox economics and its applications. In addition, also practices such as accounting, actuarial calculations, marketing, logistics and the design of commercial spaces may all contribute to the emergence of the ‘economic’ (see also Callon 1998; Callon et al. 2007; MacKenzie 2006, 2009; MacKenzie et al. 2007). On a general level, it is easy to detect three main forms in which uncertainty is ‘economized’. To begin with, multiple risk technologies have been developed to ‘tame’ uncertainty by attempting to predict and manage the extent of (economic) harm. These have been used in various fields of practice, not only in finance, engineering and infrastructure maintenance but also in health care, for example. Insurance is preeminent among risk technologies. Insurance practices operate through standardizing harmful events, giving them monetary value and spreading and mitigating their effects. During the twentieth century, a range of insurance tools were used by states, private businesses and households in order to gain a degree of control over uncertainty. Consequently, insurance
Personalized Medicine, 2012
Advances in genomics and postgenomics have renewed interest in the impact of genomic health infor... more Advances in genomics and postgenomics have renewed interest in the impact of genomic health information on private life insurance across Europe. These developments reopen the issue of how genes – apart from being the object of discrimination (exclusion) – also operate as generators of solidarity (inclusion). This article traces several developments in regulating genetics and life insurance and its social implications in the European context. At first, genes were viewed as a source of differentiation, which led to fears of ‘genetic discrimination’ in life insurance. In response, genetic nondiscrimination regulations were enacted across Europe. Current debates on the use of genomic health information in life insurance have actually opened up possibilities for a form of genomic solidarity between ‘all of us’. The introduction of genes and genomes appears to turn private life insurance practices of actuarial risk discrimination increasingly into ‘discriminatory’ practices by challenging...
Croatian Medical Journal, 2013
This article explores the merits of foregrounding the dichotomy of politicization vs de-politiciz... more This article explores the merits of foregrounding the dichotomy of politicization vs de-politicization for our understanding of bio-objects in order to study their production, circulation, and governance in European societies. By asking how bio-objects are configured in science, policy, public, and media discourses and practices, we focus on the role of socio-technical configurations in generating political relations. The bio-object thereby serves as an entry point to approach and conceptualize "the political" in an innovative way.
In: I. Van Hoyweghen, V. Pulignano, J. Meyers (Eds.) (2020)., Shifting Solidarities. Trends and Developments in European Societies. Palgrave Macmillan., 2020
in: S. Gibbon, B. Prainsack, S. Hilgartner, J. Lamoreaux (Eds.), Handbook of Genomics, Health & Society, London: Routledge. , 2018
Prainsack, B., Van Hoyweghen, I. (2020). Shifting Solidarities: Personalisation in Insurance and Medicine. In: I. Van Hoyweghen, V. Pulignano, G. Meyers (Eds.), Shifting Solidarities. Trends and Developments in European Societies. New York: Palgrave Macmillan (in press), 2020
Medicine and healthcare have been affected by the pervasive ideal of personalisation based on beh... more Medicine and healthcare have been affected by the pervasive ideal of personalisation based on behavioural, genomic and other data. Visions of personalised and precision medicine bear the promise of making healthcare cheaper and more effective. At the same time, social science scholarship has criticised these trends for increasing the risk of discrimination, and warned of a decline of solidarity. We analyse two practices, namely personalisation in insurance and in medicine, to illustrate the workings and effects of data-driven personalisation for the (un-)shaping of solidarity. We discuss how relationships between processes and phenomena that are often presented as oppositional, namely singularisation/generalisation, the individual/the population, and self-interested/other-directed practices, play off and align in surprising ways. They also open opportunities for new forms of solidarity in Europe.
February 24, 2021
In the midst of the COVID-19 pandemic, the small country of Belgium hit the international headlin... more In the midst of the COVID-19 pandemic, the small country of Belgium hit the international headlines, owing to one of the worst death tolls in the world. This prompted commentators to ask "why Belgium" has done so badly in the COVID-19 crisis management. Drawing on Renée Fox' ethnographic writings on Belgian culture and institutions, as well as STS scholarship on national political cultures, I will delve into the way Belgium has dealt with the COVID-19 outbreak, with the intent to tease out the distinctive "Belgianness" of the COVID-19 crisis, and the role thereby played by solidarity. Unlike international analysis that trace the Belgian crisis to its federal political structure, I will set out to demonstrate how a distinctive "political culture of solidarity" in the country has prominently shaped approaches and reactions to crisis management. Based on these insights, I will speculate on Belgium as a "Mini-Europe" to probe a critical reflection on the mobilization of solidarity in Europe in COVID-19 times.