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Karin R. Jongsma [21]Karin Rolanda Jongsma [9]Karin Roland Jongsma [1]
  1. Who is afraid of black box algorithms? On the epistemological and ethical basis of trust in medical AI.Juan Manuel Durán & Karin Rolanda Jongsma - 2021 - Journal of Medical Ethics 47 (5):medethics - 2020-106820.
    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 outline that black box algorithms are less problematic for epistemic reasons than many scholars seem to believe. By outlining that more transparency in algorithms is not always necessary, and by explaining that (...)
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  2.  37
    Responsibility beyond design: Physicians’ requirements for ethical medical AI.Martin Sand, Juan Manuel Durán & Karin Rolanda Jongsma - 2021 - Bioethics 36 (2):162-169.
    Bioethics, Volume 36, Issue 2, Page 162-169, February 2022.
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  3.  43
    A mobile revolution for healthcare? Setting the agenda for bioethics.Federica Lucivero & Karin R. Jongsma - 2018 - Journal of Medical Ethics 44 (10):685-689.
    Mobile health 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-effective solutions for disease prevention and self-management. While this development raises many ethically relevant questions, so far mHealth has received only little attention in medical ethics. This paper provides an overview of bioethical (...)
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  4.  33
    Experts’ moral views on gene drive technologies: a qualitative interview study.Annelien L. Bredenoord, Karin R. Jongsma & N. de Graeff - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundGene 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 broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the (...)
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  5.  55
    National Standards for Public Involvement in Research: missing the forest for the trees.Matthew S. McCoy, Karin Rolanda Jongsma, Phoebe Friesen, Michael Dunn, Carolyn Plunkett Neuhaus, Leah Rand & Mark Sheehan - 2018 - Journal of Medical Ethics 44 (12):801-804.
    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 research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for (...)
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  6.  32
    How Smart are Smart Materials? A Conceptual and Ethical Analysis of Smart Lifelike Materials for the Design of Regenerative Valve Implants.Annelien L. Bredenoord, Carlijn V. C. Bouten, Karin R. Jongsma & Anne-Floor J. de Kanter - 2023 - Science and Engineering Ethics 29 (5):1-18.
    It may soon become possible not just to replace, but to re-grow healthy tissues after injury or disease, because of innovations in the field of Regenerative Medicine. One particularly promising innovation is a regenerative valve implant to treat people with heart valve disease. These implants are fabricated from so-called ‘smart’, ‘lifelike’ materials. Implanted inside a heart, these implants stimulate re-growth of a healthy, living heart valve. While the technological development advances, the ethical implications of this new technology are still unclear (...)
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  7.  19
    Governing Gene Drive Technologies: A Qualitative Interview Study.N. de Graeff, Karin R. Jongsma, Jeantine E. Lunshof & Annelien L. Bredenoord - 2022 - AJOB Empirical Bioethics 13 (2):107-124.
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  8.  47
    Beyond competence: advance directives in dementia research.Karin Roland Jongsma & Suzanne van de Vathorst - 2015 - Monash Bioethics Review 33 (2-3):167-180.
    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 that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...)
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  9.  27
    Ethics parallel research: an approach for (early) ethical guidance of biomedical innovation.Karin R. Jongsma & Annelien L. Bredenoord - 2020 - BMC Medical Ethics 21 (1):1-9.
    BackgroundOur 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 bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the (...)
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  10.  19
    The implausibility of response shifts in dementia patients.Karin Rolanda Jongsma, Mirjam A. G. Sprangers & Suzanne van de Vathorst - 2016 - Journal of Medical Ethics 42 (9):597-600.
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  11.  94
    Nature-Versus-Nurture Considered Harmful: Actionability as an Alternative Tool for Understanding the Exposome From an Ethical Perspective.Caspar W. Safarlou, Annelien L. Bredenoord, Roel Vermeulen & Karin R. Jongsma - 2024 - Bioethics 38 (4):356-366.
    Exposome research is put forward as a major tool for solving the nature-versus-nurture debate because the exposome is said to represent “the nature of nurture.” Against this influential idea, we argue that the adoption of the nature-versus-nurture debate into the exposome research program is a mistake that needs to be undone to allow for a proper bioethical assessment of exposome research. We first argue that this adoption is originally based on an equivocation between the traditional nature-versus-nurture debate and a debate (...)
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  12.  30
    Response to our reviewers.Juan Manuel Durán & Karin Rolanda Jongsma - 2021 - Journal of Medical Ethics 47 (7):514-514.
    We would like to thank the authors of the commentaries for their critical appraisal of our feature article, Who is afraid of black box algorithms?1 Their comments, suggestions and concerns are various, and we are glad that our article contributes to the academic debate about the ethical and epistemic conditions for medical Explanatory AI. We would like to bring to attention a few issues that are common worries across reviewers. Most prominently are the merits of computational reliabilism —in particular, when (...)
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  13.  63
    Dementia and advance directives: some empirical and normative concerns.Karin R. Jongsma, Marijke C. Kars & Johannes J. M. van Delden - 2019 - Journal of Medical Ethics 45 (2):92-94.
    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, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research and (...)
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  14.  23
    Preventing Bias in Medical Devices: Identifying Morally Significant Differences.Anne-Floor J. de Kanter, Manon van Daal, Nienke de Graeff & Karin R. Jongsma - 2023 - American Journal of Bioethics 23 (4):35-37.
    Liao and Carbonell discuss the role of (supposed) racial differences and racism in two medical devices: pulse oximeters and spirometers. They show that what might seem like cases of mere bias, are...
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  15.  23
    Digital Medicine: An Opportunity to Revisit the Role of Bioethicists.Karin R. Jongsma, Annelien L. Bredenoord & Federica Lucivero - 2018 - American Journal of Bioethics 18 (9):69-70.
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  16.  32
    Dementia research and advance consent: it is not about critical interests.Karin Rolanda Jongsma & Suzanne van de Vathorst - 2015 - Journal of Medical Ethics 41 (8):708-709.
  17.  48
    Autism, autonomy, and authenticity.Elisabeth M. A. Späth & Karin R. Jongsma - 2020 - Medicine, Health Care and Philosophy 23 (1):73-80.
    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 research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be (...)
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  18.  15
    Patient Representation: Mind the Gap Between Individual and Collective Claims.Karin R. Jongsma & Silke Schicktanz - 2020 - American Journal of Bioethics 20 (4):28-30.
    With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...
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  19.  32
    Embodiment and regenerative implants: a proposal for entanglement.Manon van Daal, Anne-Floor J. de Kanter, Karin R. Jongsma, Annelien L. Bredenoord & Nienke de Graeff - 2024 - Medicine, Health Care and Philosophy 27 (2):241-252.
    Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this (...)
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  20.  52
    The Ethical Aspects of Exposome Research: A Systematic Review.Caspar Safarlou, Karin R. Jongsma, Roel Vermeulen & Annelien L. Bredenoord - 2023 - Exposome 3 (1):osad004.
    In recent years, exposome research has been put forward as the next frontier for the study of human health and disease. Exposome research entails the analysis of the totality of environmental exposures and their corresponding biological responses within the human body. Increasingly, this is operationalized by big-data approaches to map the effects of internal as well as external exposures using smart sensors and multiomics technologies. However, the ethical implications of exposome research are still only rarely discussed in the literature. Therefore, (...)
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  21.  25
    Responsible Research with Human Tissues: The Need for Reciprocity Toward Both Collectives and Individuals.Annelien L. Bredenoord, Johannes J. M. van Delden, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2021 - American Journal of Bioethics 21 (4):75-78.
    Precision medicine research involving human biological material is becoming an increasingly central component of healthcare, and its potential is quickly growing due to rapid technological progress...
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  22.  24
    The usual suspects: why techno-fixing dementia is flawed.Karin Rolanda Jongsma & Martin Sand - 2017 - Medicine, Health Care and Philosophy 20 (1):119-130.
    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. In this paper we take a critical stance towards overly positive narratives of techno-fixes by placing our empirical analysis of (...)
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  23.  47
    Why We Should Understand Conversational AI as a Tool.Marlies N. van Lingen, Noor A. A. Giesbertz, J. Peter van Tintelen & Karin R. Jongsma - 2023 - American Journal of Bioethics 23 (5):22-24.
    The introduction of chatGPT illustrates the rapid developments within Conversational Artificial Intelligence (CAI) technologies (Gordijn and Have 2023). Ethical reflection and analysis of CAI are c...
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  24.  28
    Fair Governance of Biotechnology: Patents, Private Governance, and Procedural Justice.Nienke de Graeff, Léon E. Dijkman, Karin R. Jongsma & Annelien L. Bredenoord - 2018 - American Journal of Bioethics 18 (12):57-59.
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  25.  96
    Better governance starts with better words: why responsible human tissue research demands a change of language.Annelien L. Bredenoord, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2022 - BMC Medical Ethics 23 (1):1-10.
    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 developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...)
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  26.  16
    The boundary problem: Defining and delineating the community in field trials with gene drive organisms.Nienke de Graeff, Isabelle Pirson, Rieke van der Graaf, Annelien L. Bredenoord & Karin R. Jongsma - 2023 - Bioethics 37 (6):600-609.
    Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. It (...)
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  27.  15
    Alleviating the burden of malaria with gene drive technologies? A biocentric analysis of the moral permissibility of modifying malaria mosquitoes.Nienke de Graeff, Karin Rolanda Jongsma & Annelien L. Bredenoord - 2023 - Journal of Medical Ethics 49 (11):765-771.
    Gene drive technologies (GDTs) have been proposed as a potential new way to alleviate the burden of malaria, yet have also raised ethical questions. A central ethical question regarding GDTs relates to whether it is morally permissible to intentionally modify or eradicate mosquitoes in this way and how the inherent worth of humans and non-human organisms should be factored into determining this. Existing analyses of this matter have thus far generally relied on anthropocentric and zoocentric perspectives and rejected an individualist (...)
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  28.  32
    Agree to disagree: the symmetry of burden of proof in human–AI collaboration.Karin Rolanda Jongsma & Martin Sand - 2022 - Journal of Medical Ethics 48 (4):230-231.
    In their paper ‘Responsibility, second opinions and peer-disagreement: ethical and epistemological challenges of using AI in clinical diagnostic contexts’, Kempt and Nagel discuss the use of medical AI systems and the resulting need for second opinions by human physicians, when physicians and AI disagree, which they call the rule of disagreement.1 The authors defend RoD based on three premises: First, they argue that in cases of disagreement in medical practice, there is an increased burden of proof for the physician in (...)
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  29.  17
    Leaving Users in the Dark: A Call to Define Responsibilities toward Users of Neural Implanted Devices.Odile C. Van Stuijvenberg, Annelien L. Bredenoord, Marike L. D. Broekman & Karin R. Jongsma - 2022 - American Journal of Bioethics Neuroscience 13 (4):233-236.
    Sankary et al. (2022) report the results of an empirical study on research participant experiences of exiting research at the end of clinical trials of deep-brain-stimulation (DBS) and responsive n...
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  30.  16
    Geometry of Trust: Why We Need to Distinguish Between Horizontal and Vertical Trust.Karin R. Jongsma & Annelien L. Bredenoord - 2018 - American Journal of Bioethics 18 (4):48-50.
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  31.  24
    Understanding (in) Consent for Governance.Michael A. Lensink, Sarah N. Boers, Karin R. Jongsma & Annelien L. Bredenoord - 2019 - American Journal of Bioethics 19 (5):43-45.
    Volume 19, Issue 5, May 2019, Page 43-45.
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