Ine Van Hoyweghen
Biographic Data
| ID | 185100 |
|---|---|
| NAME | Ine Van Hoyweghen |
| GIVEN NAMES | Ine |
| FAMILY NAME | Van Hoyweghen |
| SIGNATURE | VAN HOYWEGHEN I |
| AFFILIATIONS | KU Leuven |
| ORCID | 0000-0002-9402-2918 |
| VERIFIED | Yes |
| TOTAL WORKS | 41 |
| TOTAL CITATIONS | 125 |
| AUTHOR COUNT | 40 |
| EDITOR COUNT | 1 |
| FIRST PUBLICATION YEAR | 2005 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 7 |
Future‐Making From Afar
Digital twins in medicine are packaged as inevitable, disruptive technologies that will revolutionise healthcare, yet their integration into clinical practice remains slow. In this article, we extend current research on digital twins by shifting attention to the actors behind the technology and their visions. Drawing on multi‐sited fieldwork, we identify from where and how the In Silico medicine community envisions the future of medicine and trac…
Global governance of commercial actors in data-intensive health innovation
sponsorship: Horizon 2020|101057775
A qualitative comparison of data infrastructures for Covid-19 health-related data
The COVID-19 pandemic has represented the first global health emergency to be tackled through widespread data collection via a broad array of digital health technologies. Throughout Europe, data infrastructures for the acquisition, processing, and management of COVID-19 data were either implemented ex novo or “repurposed” towards this end. Analysing and comparing these data practices may hold great value to the upcoming European Health Data Space…
Boundary-work in genomic medicine
Brokering responsible research and innovation in in silico medicine
The implementation of Responsible Research and Innovation (RRI) in research projects has increased the need for interdisciplinary collaboration. This article presents our RRI approach within the Horizon 2020 ‘In Silico World' project, which aims to accelerate the adoption of in silico medicine through computer modeling and simulation tools in healthcare. To address the shortcomings of the ‘checklist approach' for integrating ethics and the risk o…
Weaving EU digital health policy into national healthcare practices. The making of a reimbursement standard for digital health technologies in Belgium
The European health data space
Solidarity during the Covid-19 pandemic
Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the in…
Navigating the uncertainties of next‐generation sequencing in the genetics clinic
This study explores the different manifestations and navigations of uncertainty in the practice of diagnostic next‐generation sequencing (NGS) testing. Drawing upon multi‐sited fieldwork conducted at a large Centre for Human Genetics in Belgium, we analyse how uncertainty takes shape and is managed in the different steps of the diagnostic process: starting from the testing offer, to the analysis in the lab, the multidisciplinary team meetings (MD…
Anticipating hopes, fears and expectations towards Covid-19 vaccines
Vaccine uptake is essential to managing the ongoing COVID-19 pandemic, and vaccine hesitancy is a persistent concern. At the same time, both decision-makers and the general population have high hopes for COVID-19 vaccination. Drawing from qualitative interview data collected in October 2020 as part of the pan-European SolPan study, this study explores early and anticipatory expectations, hopes and fears regarding COVID-19 vaccination across seven…
Democratic research
The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized …
Nonscalability of “citizen science” in post-Fukushima Japan
This article explores and discusses understandings of citizen science with members of Japanese citizen radiation measuring organizations who began measuring radioactive contamination in food, soil, air, and human bodies after the 2011 Fukushima nuclear accident. Building on in-depth interviews with organization members and extensive multi-site fieldwork (2018, 2020), the article takes shimin kagaku (citizen science in Japanese) to examine articul…
The FDA’s standard-making process for medical digital health technologies
The Role of US Policymaking in the Emergence of a Digital Health Assemblage
Promising to improve the quality of care while decreasing healthcare costs, digital health technologies (DHT) are welcomed as a solution to the challenges increasingly faced by healthcare systems in the global north. In recent years, tech developers, consultants, policymakers, and researchers in the US have heralded Big Tech entrepreneurs as driving the emergence of these technologies. However, apart from Silicon Valley visions of DHT, there are …
The social shaping of a diagnosis in Next Generation Sequencing
Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illne…
One for All, All for One? Containing the Promise of Solidarity in Precision Medicine
This article addresses the challenges solidarity poses for the development of Precision Medicine (PM). Solidarity is invoked in calls for a new ‘social contract’ for PM, seeking to promote participation in PM by emphasizing reciprocity between contributions to and benefits from this new branch of medicine. In this context, there is a need for further conceptualization with regard to what qualifies as solidarity and how solidarity is performed in …
Normative positions towards Covid-19 contact-tracing apps
Mobile applications for digital contact tracing have been developed and introduced around the world in response to the COVID-19 pandemic. Proposed as a tool to support 'traditional' forms of contact-tracing carried out to monitor contagion, these apps have triggered an intense debate with respect to their legal and ethical permissibility, social desirability and general feasibility. Based on a large-scale study including qualitative data from 349…
Big Tech platforms in health research
The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Dat…
Shifting Solidarities
Shifting Solidarities
Science by, with and for citizens
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…
Fit for purpose? The GDPR and the governance of European digital health
The introduction of the General Data Protection Regulation (GDPR) in 2018 served as the cornerstone of the new data governance regime of the European Union. Informed by principles and values such as privacy, accountability, transparency, and fairness, the GDPR is premised on the objective to balance the protection of individual privacy and the promotion of a thriving European data economy. Still, shortcomings of this regulatory effort have been n…
Happy failures
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…
Solidarity after nature
What is sustaining the divide between nature and nurture, even though sciences like epigenetics have been challenging it for at least two decades? Evelyn Fox Keller asked this question and considered it a logical problem rooted in terminological confusion within the sciences. In this article, we propose a complementary diagnosis of the problem: the nature-nurture divide is (re-)mobilized when society faces questions of inclusion and solidarity. W…
Big Data, precision medicine and private insurance
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…
Enacting Actuarial Fairness in Insurance
In line with developments in the personalisation of risk, the idea that insurance products should above all be ‘fair’ to the policyholders is increasingly voiced by commentators. The performativity thesis in Science and Technology Studies usually used to study economic markets can be used to investigate different enactments of ‘actuarial fairness’ in insurance practice. Actuarial fairness functions as a technical economic concept and was coined b…
Happy failures
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…
On the Politics of Calculative Devices
This article examines the politics of calculative devices in one of the most successful areas of finance, the life insurance business. By empirically tracing an insurance applicant's risk trajectory, it analyses how calculative devices perform insurance underwriting through acting on insurance risk decisions. This allows one to document what calculative devices exactly do, and to point out the political effects of what they do. First, it highligh…
Making genetics not so important
Fit for purpose? The GDPR and the governance of European digital health
The introduction of the General Data Protection Regulation (GDPR) in 2018 served as the cornerstone of the new data governance regime of the European Union. Informed by principles and values such as privacy, accountability, transparency, and fairness, the GDPR is premised on the objective to balance the protection of individual privacy and the promotion of a thriving European data economy. Still, shortcomings of this regulatory effort have been n…
This could be our reality in the next five to ten years
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',…
Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance
This article introduces thinking from science and technology studies (STS) and in particular the work of Callon to study the topic of genetic testing and private insurance markets. To explore the fruitfulness of this STS approach, I will reconstruct the conventional framing of genetics and insurance as a way of understanding the underlying mechanisms that have led to the solutions of enacting Genetic Non-Discrimination Acts (GNDAs) in private ins…
Making the normal deviant
Big Data, precision medicine and private insurance
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…
Navigating the uncertainties of next‐generation sequencing in the genetics clinic
This study explores the different manifestations and navigations of uncertainty in the practice of diagnostic next‐generation sequencing (NGS) testing. Drawing upon multi‐sited fieldwork conducted at a large Centre for Human Genetics in Belgium, we analyse how uncertainty takes shape and is managed in the different steps of the diagnostic process: starting from the testing offer, to the analysis in the lab, the multidisciplinary team meetings (MD…
Solidarity during the Covid-19 pandemic
Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the in…
Solidarity after nature
What is sustaining the divide between nature and nurture, even though sciences like epigenetics have been challenging it for at least two decades? Evelyn Fox Keller asked this question and considered it a logical problem rooted in terminological confusion within the sciences. In this article, we propose a complementary diagnosis of the problem: the nature-nurture divide is (re-)mobilized when society faces questions of inclusion and solidarity. W…
How Political Cultures Produce Different Antibiotic Policies in Agriculture
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 grow…
The Role of US Policymaking in the Emergence of a Digital Health Assemblage
Promising to improve the quality of care while decreasing healthcare costs, digital health technologies (DHT) are welcomed as a solution to the challenges increasingly faced by healthcare systems in the global north. In recent years, tech developers, consultants, policymakers, and researchers in the US have heralded Big Tech entrepreneurs as driving the emergence of these technologies. However, apart from Silicon Valley visions of DHT, there are …
Reflections on different governance styles in regulating science
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 styl…
Constructing access in predictive medicine. Comparing classification for hereditary breast cancer risks in England, Germany and the Netherlands
A qualitative comparison of data infrastructures for Covid-19 health-related data
The COVID-19 pandemic has represented the first global health emergency to be tackled through widespread data collection via a broad array of digital health technologies. Throughout Europe, data infrastructures for the acquisition, processing, and management of COVID-19 data were either implemented ex novo or “repurposed” towards this end. Analysing and comparing these data practices may hold great value to the upcoming European Health Data Space…
Big Tech platforms in health research
The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Dat…
Learning from Co-evolution of Policy and Technology. Different PGDs in the Netherlands, Germany and Britain
Approaches in comparative policy analysis have so far focused on the understanding of actors, institutions and their positions in the policy-making process. More recent work attempts to enrich comparative policy analysis by taking the social context and culture into account, in order to do justice to the relevance of policy context for policy content. However, the object or content of policy making has so far largely remained a black box. In this…
Genetics is not the issue’
This article offers an analysis of the way private insurers deal with the issue of genetics and insurance. Drawing on specific written insurance sources, a reconstruction is made of internal debates on genetics and insurance within the private insurance world in Europe and the United States. The article starts by analyzing the way insurers initially framed the issue of genetics. It proceeds by showing how ideas with respect to this issue develope…
Making the normal deviant
Learning from Co-evolution of Policy and Technology. Different PGDs in the Netherlands, Germany and Britain
Approaches in comparative policy analysis have so far focused on the understanding of actors, institutions and their positions in the policy-making process. More recent work attempts to enrich comparative policy analysis by taking the social context and culture into account, in order to do justice to the relevance of policy context for policy content. However, the object or content of policy making has so far largely remained a black box. In this…
Evidence-based underwriting in the molecular age
One of the most contentious topics in public policy debates on genetics has been the use of genetic information by private insurance companies. Confronted with legislation prohibiting the use of genetics in private insurance, the insurance industry has been prompted to deal proactively with the issue. One central feature of this change in tactics is the investment in “evidence-based underwriting”, currently promoted by transnational reinsurance c…
Solidarity in practices of provision
Solidarity is widely described as one of the leading principles for the public provision of health care in Western Europe and is therefore prominently discussed in debates on the introduction of genetic technologies in national health care provision arrangements. However, solidarity is often defined in an essentialist and quantitative way, which does very little to show the complexities of and changes in health care allocation. In this paper we t…
Solidarity matters
status: Published
Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance
This article introduces thinking from science and technology studies (STS) and in particular the work of Callon to study the topic of genetic testing and private insurance markets. To explore the fruitfulness of this STS approach, I will reconstruct the conventional framing of genetics and insurance as a way of understanding the underlying mechanisms that have led to the solutions of enacting Genetic Non-Discrimination Acts (GNDAs) in private ins…
Constructing access in predictive medicine. Comparing classification for hereditary breast cancer risks in England, Germany and the Netherlands
Making genetics not so important
Streitkultur and the governance of genetic testing and insurance in Germany
Rapid developments in genetic testing have given rise to fundamental ethical, legal, and social questions that need to be dealt with in society. Results of genetic tests may be of interest to third parties such as private insurance companies, leading to fears of genetic discrimination. In Germany, the Government adopted the Genetic Diagnosis Act (Gendiagnostikgesetz, GenDG) in 2009 to protect people from, inter alia, genetic discrimination in obt…
On the Politics of Calculative Devices
This article examines the politics of calculative devices in one of the most successful areas of finance, the life insurance business. By empirically tracing an insurance applicant's risk trajectory, it analyses how calculative devices perform insurance underwriting through acting on insurance risk decisions. This allows one to document what calculative devices exactly do, and to point out the political effects of what they do. First, it highligh…
Shaping the future and living in the present
Reflections on different governance styles in regulating science
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 styl…
Enacting Actuarial Fairness in Insurance
In line with developments in the personalisation of risk, the idea that insurance products should above all be ‘fair’ to the policyholders is increasingly voiced by commentators. The performativity thesis in Science and Technology Studies usually used to study economic markets can be used to investigate different enactments of ‘actuarial fairness’ in insurance practice. Actuarial fairness functions as a technical economic concept and was coined b…
How Political Cultures Produce Different Antibiotic Policies in Agriculture
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 grow…
This could be our reality in the next five to ten years
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',…
Big Data, precision medicine and private insurance
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…
Shifting Solidarities
Shifting Solidarities
Science by, with and for citizens
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…
Fit for purpose? The GDPR and the governance of European digital health
The introduction of the General Data Protection Regulation (GDPR) in 2018 served as the cornerstone of the new data governance regime of the European Union. Informed by principles and values such as privacy, accountability, transparency, and fairness, the GDPR is premised on the objective to balance the protection of individual privacy and the promotion of a thriving European data economy. Still, shortcomings of this regulatory effort have been n…
Happy failures
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…
Solidarity after nature
What is sustaining the divide between nature and nurture, even though sciences like epigenetics have been challenging it for at least two decades? Evelyn Fox Keller asked this question and considered it a logical problem rooted in terminological confusion within the sciences. In this article, we propose a complementary diagnosis of the problem: the nature-nurture divide is (re-)mobilized when society faces questions of inclusion and solidarity. W…
The social shaping of a diagnosis in Next Generation Sequencing
Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illne…
One for All, All for One? Containing the Promise of Solidarity in Precision Medicine
This article addresses the challenges solidarity poses for the development of Precision Medicine (PM). Solidarity is invoked in calls for a new ‘social contract’ for PM, seeking to promote participation in PM by emphasizing reciprocity between contributions to and benefits from this new branch of medicine. In this context, there is a need for further conceptualization with regard to what qualifies as solidarity and how solidarity is performed in …
Political science (31 works) · Sociology (26 works) · Law (24 works) · Public relations (15 works) · Law (14 works) · Medicine (14 works) · Computer Science (13 works) · Biomedical Ethics and Regulation (12 works) · Business (11 works) · Health care (11 works)