Marianne Boenink
Biographic Data
| ID | 322579 |
|---|---|
| NAME | Marianne Boenink |
| GIVEN NAMES | Marianne |
| FAMILY NAME | Boenink |
| SIGNATURE | BOENINK M |
| AFFILIATIONS | University of Twente |
| ORCID | 0000-0002-7017-0043 |
| VERIFIED | Yes |
| TOTAL WORKS | 19 |
| TOTAL CITATIONS | 39 |
| AUTHOR COUNT | 19 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2009 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 4 |
Embedding ethics in infrastructures for data-intensive health research
Data-intensive health research requires robust infrastructure, encompassing the material, social, and institutional structures that facilitate large-scale data storage, sharing, and linkage. Such infrastructures are a central element of the research process, offering opportunities to integrate ethical considerations and promote responsible research practices. We analyze different ways of embedding ethics in infrastructures for data-intensive heal…
The Role of Social Value in Data‐Intensive Health Research
Data‐intensive health research complicates traditional requirements for informed consent, due to the amount of data contributors and data points, the open‐ended nature of research questions, and repeated or secondary data use. To still enable data‐intensive health research, there is a move towards other—generally lower—standards for consent such as opt‐out systems, in current developments such as the European Health Data Space (EHDS). This is pre…
Anticipating the Future in an Uncertain Present
INTRODUCTION: In research on Alzheimer's disease (AD) individuals experiencing cognitive problems but not satisfying criteria for mild cognitive impairment (MCI) or AD are referred to as having 'Subjective Cognitive Decline' (SCD). A small subset of them will progress to a state justifying an AD diagnosis. AD research trying to identify prognostic biomarkers aims to inform individuals labelled with SCD about the future development of their compla…
Bridging comic art and research
The Dutch graphic novel Naasten , about palliative family caregiving, is the product of an interdisciplinary collaboration between researchers and two comic artists. This paper aims to present lessons, reflections and practical recommendations for other researchers interested in adopting (comic) arts-based research methods, in which artistic methods are used as novel ways for generating, analysing, interpreting or representing research data.Our p…
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Can we learn from hidden mistakes? Self-fulfilling prophecy and responsible neuroprognostic innovation
A self-fulfilling prophecy (SFP) in neuroprognostication occurs when a patient in coma is predicted to have a poor outcome, and life-sustaining treatment is withdrawn on the basis of that prediction, thus directly bringing about a poor outcome (viz. death) for that patient. In contrast to the predominant emphasis in the bioethics literature, we look beyond the moral issues raised by the possibility that an erroneous prediction might lead to the d…
Ambivalent anticipation
Emergent biomarkers for Alzheimer's disease (AD) are expected to provide earlier and more precise diagnoses. However, even if biomarkers live up to these expectations, it cannot be taken for granted that patients actually would value an earlier and more precise AD diagnosis. Based on an interview study, we aim to give more insight into the value of an AD diagnosis for patients, in existing as well as future practices, by describing how a diagnosi…
Values in responsible research and innovation
This article explores the understanding of values in Responsible Research and Innovation (RRI). First, it analyses how two mainstream RRI approaches, the largely substantial one by Von Schomberg and the procedural one by Stilgoe and colleagues, identify and conceptualize values. We argue that by treating values as relatively stable entities, directly available for reflection, both fall into an ‘entity trap’. As a result, the hermeneutic work requ…
Subtle voices, distant futures
Patient involvement is increasingly regarded a key part of responsible innovation (RI) in biomedicine. The high expectations to participation call not only for methodological experiments, but also for critical analyses of the conditions and products of participatory practices. Based on an experiment with involving patients in Alzheimer’s disease biomarker research, we identify and reflect on two key conditions in patient involvement that we summa…
Gatekeeping and trailblazing
Giving Voice to Patients
Biomedical research policy in recent years has often tried to make such research more 'translational', aiming to facilitate the transfer of insights from research and development (R&D) to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical r…
Assessing Expectations
In recent years, several authors have argued that the desirability of novel technologies should be assessed early, when they are still emerging. Such an ethical assessment of emerging technologies is by definition focused on an elusive object. Usually promises, expectations, and visions of the technology are taken as a starting point. As Nordmann and Rip have pointed out in a recent article, however, ethicists should not take for granted the plau…
Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA
Anticipating the Interaction between Technology and Morality
During the last decades several tools have been developed to anticipate the future impact of new and emerging technologies. Many of these focus on hard, quantifiable impacts, investigating how novel technologies may affect health, environment and safety. Much less attention is paid to what might be called soft impacts: the way technology influences, for example, the distribution of social roles and responsibilities, moral norms and values, or ide…
Exploring the interaction between technology and morality in the field of genetic susceptibility testing
Exploring Techno-Moral Change
Tensions and Opportunities in Convergence
The convergence of biomedical sciences with nanotechnology as well as ICT has created a new wave of biomedical technologies, resulting in visions of a 'molecular medicine'. Since novel technologies tend to shift concepts of disease and health, this paper investigates how the emerging field of molecular medicine may shift the meaning of 'disease' as well as the boundary between health and disease. It gives a brief overview of the development towar…
Converging Technologies, Shifting Boundaries
At the beginning of the 21 century, most people are no longer surprised by technological revolutions. The twentieth century brought us information technology and biotechnology: key technologies for pioneering innovations such as the computer, the Internet and genetically modified plants. In the transition to the twenty-first century, two other important developments: nanotechnology (the research and design of materials at the smallest level possi…
Taking Care of the Symbolic Order. How Converging Technologies Challenge our Concepts
In this article we briefly summarize how converging technologies challenge elements of the existing symbolic order, as shown in the contributions to this special issue. We then identify the vision of 'life as a do it yourself kit' as a common denominator in the various forms of convergence and proceed to show how this vision provokes unrest and debate about existing moral frameworks and taboos. We conclude that, just as the problems of the indust…
Anticipating the Interaction between Technology and Morality
During the last decades several tools have been developed to anticipate the future impact of new and emerging technologies. Many of these focus on hard, quantifiable impacts, investigating how novel technologies may affect health, environment and safety. Much less attention is paid to what might be called soft impacts: the way technology influences, for example, the distribution of social roles and responsibilities, moral norms and values, or ide…
Assessing Expectations
In recent years, several authors have argued that the desirability of novel technologies should be assessed early, when they are still emerging. Such an ethical assessment of emerging technologies is by definition focused on an elusive object. Usually promises, expectations, and visions of the technology are taken as a starting point. As Nordmann and Rip have pointed out in a recent article, however, ethicists should not take for granted the plau…
Taking Care of the Symbolic Order. How Converging Technologies Challenge our Concepts
In this article we briefly summarize how converging technologies challenge elements of the existing symbolic order, as shown in the contributions to this special issue. We then identify the vision of 'life as a do it yourself kit' as a common denominator in the various forms of convergence and proceed to show how this vision provokes unrest and debate about existing moral frameworks and taboos. We conclude that, just as the problems of the indust…
Exploring the interaction between technology and morality in the field of genetic susceptibility testing
Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA
Giving Voice to Patients
Biomedical research policy in recent years has often tried to make such research more 'translational', aiming to facilitate the transfer of insights from research and development (R&D) to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical r…
Converging Technologies, Shifting Boundaries
At the beginning of the 21 century, most people are no longer surprised by technological revolutions. The twentieth century brought us information technology and biotechnology: key technologies for pioneering innovations such as the computer, the Internet and genetically modified plants. In the transition to the twenty-first century, two other important developments: nanotechnology (the research and design of materials at the smallest level possi…
Tensions and Opportunities in Convergence
The convergence of biomedical sciences with nanotechnology as well as ICT has created a new wave of biomedical technologies, resulting in visions of a 'molecular medicine'. Since novel technologies tend to shift concepts of disease and health, this paper investigates how the emerging field of molecular medicine may shift the meaning of 'disease' as well as the boundary between health and disease. It gives a brief overview of the development towar…
Exploring Techno-Moral Change
Tensions and Opportunities in Convergence
The convergence of biomedical sciences with nanotechnology as well as ICT has created a new wave of biomedical technologies, resulting in visions of a 'molecular medicine'. Since novel technologies tend to shift concepts of disease and health, this paper investigates how the emerging field of molecular medicine may shift the meaning of 'disease' as well as the boundary between health and disease. It gives a brief overview of the development towar…
Converging Technologies, Shifting Boundaries
At the beginning of the 21 century, most people are no longer surprised by technological revolutions. The twentieth century brought us information technology and biotechnology: key technologies for pioneering innovations such as the computer, the Internet and genetically modified plants. In the transition to the twenty-first century, two other important developments: nanotechnology (the research and design of materials at the smallest level possi…
Taking Care of the Symbolic Order. How Converging Technologies Challenge our Concepts
In this article we briefly summarize how converging technologies challenge elements of the existing symbolic order, as shown in the contributions to this special issue. We then identify the vision of 'life as a do it yourself kit' as a common denominator in the various forms of convergence and proceed to show how this vision provokes unrest and debate about existing moral frameworks and taboos. We conclude that, just as the problems of the indust…
Anticipating the Interaction between Technology and Morality
During the last decades several tools have been developed to anticipate the future impact of new and emerging technologies. Many of these focus on hard, quantifiable impacts, investigating how novel technologies may affect health, environment and safety. Much less attention is paid to what might be called soft impacts: the way technology influences, for example, the distribution of social roles and responsibilities, moral norms and values, or ide…
Exploring the interaction between technology and morality in the field of genetic susceptibility testing
Assessing Expectations
In recent years, several authors have argued that the desirability of novel technologies should be assessed early, when they are still emerging. Such an ethical assessment of emerging technologies is by definition focused on an elusive object. Usually promises, expectations, and visions of the technology are taken as a starting point. As Nordmann and Rip have pointed out in a recent article, however, ethicists should not take for granted the plau…
Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA
Gatekeeping and trailblazing
Giving Voice to Patients
Biomedical research policy in recent years has often tried to make such research more 'translational', aiming to facilitate the transfer of insights from research and development (R&D) to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical r…
Subtle voices, distant futures
Patient involvement is increasingly regarded a key part of responsible innovation (RI) in biomedicine. The high expectations to participation call not only for methodological experiments, but also for critical analyses of the conditions and products of participatory practices. Based on an experiment with involving patients in Alzheimer’s disease biomarker research, we identify and reflect on two key conditions in patient involvement that we summa…
Values in responsible research and innovation
This article explores the understanding of values in Responsible Research and Innovation (RRI). First, it analyses how two mainstream RRI approaches, the largely substantial one by Von Schomberg and the procedural one by Stilgoe and colleagues, identify and conceptualize values. We argue that by treating values as relatively stable entities, directly available for reflection, both fall into an ‘entity trap’. As a result, the hermeneutic work requ…
Ambivalent anticipation
Emergent biomarkers for Alzheimer's disease (AD) are expected to provide earlier and more precise diagnoses. However, even if biomarkers live up to these expectations, it cannot be taken for granted that patients actually would value an earlier and more precise AD diagnosis. Based on an interview study, we aim to give more insight into the value of an AD diagnosis for patients, in existing as well as future practices, by describing how a diagnosi…
Can we learn from hidden mistakes? Self-fulfilling prophecy and responsible neuroprognostic innovation
A self-fulfilling prophecy (SFP) in neuroprognostication occurs when a patient in coma is predicted to have a poor outcome, and life-sustaining treatment is withdrawn on the basis of that prediction, thus directly bringing about a poor outcome (viz. death) for that patient. In contrast to the predominant emphasis in the bioethics literature, we look beyond the moral issues raised by the possibility that an erroneous prediction might lead to the d…
Downgrades
Contains fulltext : 299976.pdf (Publisher’s version ) (Open Access)
Bridging comic art and research
The Dutch graphic novel Naasten , about palliative family caregiving, is the product of an interdisciplinary collaboration between researchers and two comic artists. This paper aims to present lessons, reflections and practical recommendations for other researchers interested in adopting (comic) arts-based research methods, in which artistic methods are used as novel ways for generating, analysing, interpreting or representing research data.Our p…
Anticipating the Future in an Uncertain Present
INTRODUCTION: In research on Alzheimer's disease (AD) individuals experiencing cognitive problems but not satisfying criteria for mild cognitive impairment (MCI) or AD are referred to as having 'Subjective Cognitive Decline' (SCD). A small subset of them will progress to a state justifying an AD diagnosis. AD research trying to identify prognostic biomarkers aims to inform individuals labelled with SCD about the future development of their compla…
Embedding ethics in infrastructures for data-intensive health research
Data-intensive health research requires robust infrastructure, encompassing the material, social, and institutional structures that facilitate large-scale data storage, sharing, and linkage. Such infrastructures are a central element of the research process, offering opportunities to integrate ethical considerations and promote responsible research practices. We analyze different ways of embedding ethics in infrastructures for data-intensive heal…
The Role of Social Value in Data‐Intensive Health Research
Data‐intensive health research complicates traditional requirements for informed consent, due to the amount of data contributors and data points, the open‐ended nature of research questions, and repeated or secondary data use. To still enable data‐intensive health research, there is a move towards other—generally lower—standards for consent such as opt‐out systems, in current developments such as the European Health Data Space (EHDS). This is pre…
Computer Science (14 works) · Engineering ethics (10 works) · Political science (10 works) · Psychology (10 works) · Engineering (9 works) · Epistemology (8 works) · Medicine (7 works) · Sociology (7 works) · Neuroethics, Human Enhancement, Biomedical Innovations (6 works) · Ethics in Clinical Research (5 works)