Karin Jongsma

Karin Jongsma
University Medical Center Utrecht | UMC Utrecht · Department of Public Health, Health Technology Assessment and Medical Humanities (PHM)

PhD
Listed as one of the brilliant women in AI ethics 2023 https://womeninaiethics.org/

About

83
Publications
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706
Citations
Citations since 2017
70 Research Items
698 Citations
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2017201820192020202120222023050100150200250

Publications

Publications (83)
Article
Researchers can now coax human pluripotent stem cells to imitate the structure and spontaneous self-organization of the developing human embryo. Although these stem cell-based embryo models present an advantageous alternative to embryo research, they also raise ethical and policy challenges. In 2021, the International Society for Stem Cell Research...
Article
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Tissue Engineering is a branch of Regenerative Medicine that combines stem cells and biomaterial scaffolds to create living tissue constructs to restore patients' organs after injury or disease. Over the last decade, emerging technologies such as 3D bioprinting, biofabrication, supramolecular materials, induced pluripotent stem cells and organoids...
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This contribution sets out to criticize the prominent metaphor of “death while alive” in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those aff...
Article
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The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these...
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Recent progress in the development of artificial intelligence (AI) has sparked enthusiasm for its potential use in pathology. As pathology labs are currently starting to shift their focus towards AI implementation, a better understanding how AI tools can be optimally aligned with the medical and social context of pathology daily practice is urgentl...
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The past decades witnessed the slow evolution of Europe's heterogeneous stem cell (SC) policy and substantial scientific advances in the field. Parallel to these developments, professional organizations have grown in influence. With the recently revised International Society for Stem Cell Research's Guidelines as a backdrop, we address the evolutio...
Article
Background: The perspectives of researchers and patients regarding roles and responsibilities in stem cell research are rarely studied, but these could offer insights about responsible research conduct. Method: We have conducted a qualitative study consisting of focus groups with both early- (n = 7) and late-career stem cell researchers (n = 11) th...
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Objective The James Lind Alliance (JLA) offers a method for better aligning health and care agenda’s with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw attention to crucial lessons learnt when establishing such a shared research agenda. Key arguments Having sp...
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Objective . The aim of this review was to systematically identify the ethical implications of visual neuroprostheses. Approach . A systematic search was performed in both PubMed and Embase using a search string that combined synonyms for visual neuroprostheses, brain–computer interfaces (BCIs), cochlear implants (CIs), and ethics. We chose to inclu...
Preprint
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What is public engagement, what is needed for successful public engagement and how can public engagement be perceived as part of open science? This commentary highlights reflections on these questions from 15 public engagement fellows in Utrecht University's Open Science Programme. With a goal of finding common ground intended as input for further...
Article
How is public engagement perceived to contribute to open science? This commentary highlights common reflections on this question from interviews with 12 public engagement fellows in Utrecht University’s Open Science Programme in the Netherlands. We identify four reasons why public engagement is an essential enabler of open science. Interaction betw...
Article
"Over the years, numerous ethical implications in stem cell research have been identified. Consequentially, there is a need to anticipate, prevent and/or mitigate these implications. In literature and in the guidelines of the International Society for Stem Cell Research some of these implications have been reframed into (moral) responsibilities. Wh...
Article
"Induced pluripotent stem cells (iPSCs) have been praised for overcoming some of the ethical challenges of embryonic stem cell research, including oocyte donation for research and the destruction of human embryos. However, iPSC-research and iPSC-based interventions are not morally neutral alternatives and have their own ethical implications that ar...
Article
"Gene drive technologies (GDT) promote the rapid, progressive spread of gene alterations within a population or a species of wild organisms. If GDT are successfully developed and implemented, they could help to resolve intractable problems in the realm of vector-borne disease, invasive species and pest control, but these technologies have also rais...
Article
"Today, a person can receive a hip implant to replace a deformed, swollen hip joint or a pacemaker to sustain the beating rhythm of their heart. Thanks to Regenerative Medicine, soon, it may become possible not just to replace, but to re-grow healthy tissues after injury or disease. To this end, tissue engineers are designing ‘smart’, ‘life-like’ b...
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Background Gene drive technologies (GDTs) bias the inheritance of a genetic element within a population of non-human organisms, promoting its progressive spread across this population. If successful, GDTs may be used to counter intractable problems such as vector-borne diseases. A key issue in the debate on GDTs relates to what governance is approp...
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The ethical implications of stem cell research are often described in terms of risks, side effects, safety, and therapeutic value, which are examples of so-called hard impacts. Hard impacts are typically measurable and quantifiable. To understand the broader spectrum of ethical implications of stem cell research on science and society, it is equall...
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By 2030, more than 80% of Europe's population will live in an urban environment. The urban exposome, consisting of factors such as where we live and work, where and what we eat, our social network, and what chemical and physical hazards we are exposed to, provides important targets to improve population health. The EXPANSE (EXposome Powered tools f...
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Medical AI is increasingly being developed and tested to improve medical diagnosis, prediction and treatment of a wide array of medical conditions. Despite worries about the explainability and accuracy of such medical AI systems, it is reasonable to assume that they will be increasingly implemented in medical practice. Current ethical debates focus...
Article
Background Digital health technologies are believed to change the patient-physician relationship. Such changes are still speculative, as there are no studies in which both patients and health care professionals are asked for their experiences and perspectives on how digital health affects the patient-physician relationship. Methods We performed a...
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Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together wi...
Article
Aim: Organoid technology has enormous potential for precision medicine, such as has recently been demonstrated in the field of cystic fibrosis. However, storage and use of organoids has been associated with ethical challenges and there is currently a lack of harmony in regulation and guidelines to govern the rapid emergence of ‘organoid medicine’....
Article
The use of black box algorithms in medicine has raised scholarly concerns due to their opaqueness and lack of trustworthiness. Concerns about potential bias, accountability and responsibility, patient autonomy and compromised trust transpire with black box algorithms. These worries connect epistemic concerns with normative issues. In this paper, we...
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Background Gene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although br...
Article
Aim: To explore the perspectives of patients and laymen with regard to the development, use and storage of cerebral organoids, in order to contribute to the ethical debate about this technology. Materials & methods: In depth semi-structured interviews with 28 patients and laymen were conducted. A qualitative thematic analysis was undertaken using a...
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Background Organoid technology is emerging rapidly as a valuable tool for precision medicine, particularly in the field of Cystic Fibrosis (CF). However, biobank storage and use of patient-derived organoids raises specific ethical and practical challenges that demand sound governance. We examined the perspectives of professionals affiliated with CF...
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Background The James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. The method is increasingly used but publications primarily discuss the outcome of such projects, rather than reflecting on the JLA method itself. Scrutiny of the method is crucial in order to understand and correctly interpre...
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Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement shoul...
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This commentary outlines challenges with identifying and implementing ethical, legal and societal considerations when initiating large-scale scientific programs and suggests best practices to ensure responsible research.
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Background: Our human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for b...
Preprint
Full-text available
Background: Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together w...
Preprint
Full-text available
Background Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together wi...
Article
Background Hypertensive disorders of pregnancy (HDP) are a primary cause of adverse maternal and neonatal outcomes worldwide. For women at risk of hypertensive complications, guidelines recommend frequent surveillance of blood pressure and signs of preeclampsia. Clinic visits range from every 2 weeks to several times a week. Given the wide ubiquity...
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Scientific discoveries are often to some degree influenced by luck. Whether luck's influence is at odds with common-sense intuitions about responsibility, is the central concern of the philosophical debate about moral luck. Do scientists acknowledge that luck plays a role in their work and-if so-do they consider it morally problematic? The present...
Article
In the field of digital ethics, value-sensitive design1 is one of the most influential normative methodologies. The basic aim of value-sensitive design is to integrate human values in technologies from the very start of the design process.1 While value-sensitive design is widely discussed and applied to various technologies in the western European...
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Background: Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Little is known...
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Organoids are three-dimensional multicellular structures grown in vitro from stem cells and which recapitulate some organ function. They are derivatives of living tissue that can be stored in biobanks for a multitude of research purposes. Biobank research on organoids derived from patients is highly promising for precision medicine, which aims to t...
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Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism resear...
Book
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Ethical issues linked to the involvement of people with dementia in research, both in the context of Public Involvement and as research participants (with an emphasis on the recognition of diversity and on promoting inclusive research).
Preprint
BACKGROUND Hypertensive disorders of pregnancy (HDP) are a primary cause of adverse maternal and neonatal outcomes worldwide. For women at risk of hypertensive complications, guidelines recommend frequent surveillance of blood pressure and signs of preeclampsia. Clinic visits range from every 2 weeks to several times a week. Given the wide ubiquity...
Article
Full-text available
Background: eHealth promises to increase self-management and personalised medicine and improve cost-effectiveness in primary care. Paired with these promises are ethical implications, as eHealth will affect patients’ and primary care professionals’ (PCPs) experiences, values, norms, and relationships. Objectives: We argue what ethical implications...
Article
The world has been startled by the irresponsible experiment of He Jiankui, who used CRISPR to genetically modify human embryos. In this viewpoint, we explore the phenomenon of moral luck in medicine and its bearing on the limits of simple judgements of the kind "everything that ends well is well" or "someone broke the rules, and is therefore blamew...
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In recent years, new genome editing technologies have emerged that can edit the genome of non-human animals with progressively increasing efficiency. Despite ongoing academic debate about the ethical implications of these technologies, no comprehensive overview of this debate exists. To address this gap in the literature, we conducted a systematic...
Article
Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and r...
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Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Ma...
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This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent up- heavals: the critique of social stigmatization and bio- medical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, a...
Article
Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into colle...
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Unsere Sicht der Demenz ist von kulturellen Metaphern geprägt. Sie ziehen Analogien zu vertrauten Erfahrungsbereichen und eröffnen so ein Verständnis von einem ansonsten schwer fassbaren und letzten Endes unergründlichen Geschehen. In zeitgenössischen Diskursen über die Demenz spielen insbesondere zwei biographische Metaphern eine maßgebliche Rolle...
Article
The authors of the paper ‘Advance euthanasia directives: a controversial case and its ethical implications’ articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase...
Article
Mobile health (mHealth) is rapidly being implemented and changing our ways of doing, understanding and organising healthcare. mHealth includes wearable devices as well as apps that track fitness, offer wellness programmes or provide tools to manage chronic conditions. According to industry and policy makers, these systems offer efficient and cost-e...
Article
The idea that dementia is essentially a return to childhood and those affected must somehow be similar to children constitutes a deeply rooted and pervasive cultural trope. While such tropes may be helpful in making sense of an otherwise elusive and inscrutable state, they can at the same time promote inadequate understandings of dementia and hence...
Article
The important work done by various associations of and for people with disabilities is legitimated by their claim for collective representation. However, there is little empirical research that examines the organizational basis for such claims. We focus on patient/disability advocacy associations that illustrate a split of representation between or...
Article
Patient organizations (POs) represent patient collectives in health care policy. The inclusion of people with a ‘neuro-psychiatric’ condition poses a particular challenge for the organizational processes and political representation of such collectives. In recent years, new POs (POs of) have been established in the field of autism spectrum disorder...
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Background Trust within organizations is important for ensuring members’ acceptance of the organization’s activities and to expand their scope of action. Remarkably, Patient Organizations (POs) that often both function as a forum for self-help and represent patients on the health-political level, have been understudied in this respect. This paper a...
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Dementia is highly prevalent and up until now, still incurable. If we may believe the narrative that is currently dominant in dementia research, in the future we will not have to suffer from dementia anymore, as there will be a simple techno-fix solution. It is just a matter of time before we can solve the growing public health problem of dementia....
Article
Dementia patients may express wishes that do not conform to or contradict earlier expressed preferences. Our understanding of the difference between their prior preferences and current wishes has important consequences for the way we deal with advance directives. Some bioethicists and gerontologists have argued that dementia patients change because...
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Background/objectives: A substantial proportion of dementia patients are excluded from research participation, while for extrapolation of the study findings, it is important that the research population represents the patient population. The aim of this study is to provide an analysis of dementia research and its exclusion criteria in order to get...
Article
The possibility of using advance directives to prospectively consent to research participation in the event of dementia remains largely unexplored in Europe. Moreover, the legal status of advance directives for research is unclear in the European regulations governing biomedical research. The article explores the place that advance research directi...
Chapter
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This paper explores how Transhumanists present their vision and claims. We will present the argumentation line of Transhumanism and some of its critics. In assessing the extreme Transhumanistic vision, its argumentations and its underlying values, we gain a better understanding of the phenomena of ageing and the misguided desires that sometimes dri...
Article
Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability,...
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Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients' gradual loss of the capacity to consent. Patients with dementia are characterized by the fact th...
Article
Tom Buller presents a rich and thoughtful proposal for using advance directives in the context of research.1 He argues that the arguments presented in support of advance directives within the context of treatment also count within the context of research. Furthermore, he argues that research participation can be a critical interest and, therefore,...
Article
In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to...
Article
Als we een effectieve behandeling of een geneesmiddel willen vinden voor dementie, is het belangrijk dat demente ouderen worden geïncludeerd in onderzoekstrials. Dementerende ouderen zijn in het algemeen in eerdere stadia van hun leven prima in staat zijn geweest om informed consent te geven voor deelname aan onderzoek, maar hebben door de dementie...

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Projects (5)
Project
This Marie Skłodowska-Curie-Research Project deals with „Moral Luck in Science and Innovation“. Since the long-term effects of emerging technologies such as robotics, autonomous driving, or big data can hardly be anticipated, it is partially a matter of luck whether these technologies will contribute to societal values such as justice, privacy, inclusiveness, and sustainability. In this way, luck possibly undermines the ambition to govern science and innovation processes responsibly and current practices of attributing responsibility in those fields.
Project
In my PhD research, I will explore the ethical considerations concerning gene drives, a genome editing technology based on CRISPR.