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Karin Jongsma [9]Karin R. Jongsma [7]Karin Rolanda Jongsma [4]Karin Roland Jongsma [1]
  1.  17
    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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  2.  21
    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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  3.  22
    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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  4.  10
    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.
  5.  8
    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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  6.  15
    Return to Childhood? Against the Infantilization of People with Dementia.Karin Jongsma & Mark Schweda - 2018 - Bioethics 32 (7):414-420.
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  7.  6
    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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  8.  8
    The Usual Suspects: Why Techno-Fixing Dementia is Flawed.Karin Rolanda Jongsma & Martin Sand - 2017 - Medicine, Health Care and Philosophy 20 (1):119-130.
  9.  6
    Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel.Silke Schicktanz, Nitzan Rimon-Zarfaty, Aviad Raz & Karin Jongsma - 2018 - Journal of Bioethical Inquiry 15 (3):369-380.
    This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...)
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  10.  4
    One For All, All For One? Collective Representation in Healthcare Policy.Karin Jongsma, Nitzan Rimon-Zarfaty, Aviad Raz & Silke Schicktanz - 2018 - Journal of Bioethical Inquiry 15 (3):337-340.
    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 collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention (...)
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  11.  24
    Epistemic Injustice in Dementia and Autism Patient Organizations: An Empirical Analysis.Karin Jongsma, Elisabeth Spaeth & Silke Schicktanz - 2017 - Ajob Empirical Bioethics 8 (4):221-233.
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  12.  11
    The Challenge of Demandingness in Citizen Science and Participatory Research.Karin Jongsma & Phoebe Friesen - 2019 - American Journal of Bioethics 19 (8):33-35.
    Volume 19, Issue 8, August 2019, Page 33-35.
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  13.  10
    Understanding 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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  14.  9
    Morally Relevant Similarities and Differences Between Children and Dementia Patients as Research Subjects: Representation in Legal Documents and Ethical Guidelines.Karin Jongsma, Wendy Bos & Suzanne Vathorst - 2015 - Bioethics 29 (9):662-670.
    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, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...)
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  15.  8
    Advance Directives in Dementia Research: The Opinions and Arguments of Clinical Researchers − an Empirical Study.Karin Jongsma & Suzanne van de Vathorst - 2015 - Research Ethics 11 (1):4-14.
    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 consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative (...)
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  16.  7
    Autism, Autonomy, and Authenticity.Elisabeth M. A. Späth & Karin R. Jongsma - forthcoming - Medicine, Health Care and Philosophy.
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  17.  11
    ‚Rückkehr in die Kindheit‘ oder ‚Tod bei lebendigem Leib‘? Ethische Aspekte der Altersdemenz in der Perspektive des Lebensverlaufs.Mark Schweda & Karin Jongsma - 2018 - Zeitschrift Für Praktische Philosophie 5 (1):181-206.
    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: die der,Rückkehr in die Kindheit‘ und die des,Todes bei lebendigem Leib‘. Der Beitrag unterzieht beide Vorstellungen einer kritischen Reflexion. Er erläutert zunächst die kulturgeschichtliche Herkunft und Bedeutung der Kindheits- und Todesmetapher. Im Anschluss geht er ihren Implikationen (...)
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  18.  8
    Why Neural Determinism is Not Real Determinism and Why Mental States Cannot Act.Martin Sand & Karin Jongsma - 2016 - American Journal of Bioethics Neuroscience 7 (4):205-207.
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  19.  7
    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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