24 found
Order:
Disambiguations
Karin Jongsma [12]Karin R. Jongsma [9]Karin Rolanda Jongsma [4]Karin Roland Jongsma [1]
  1.  21
    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 (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  2.  29
    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 (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  3.  8
    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.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  4.  29
    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 (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  5.  5
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  6.  5
    Patient Representation: Mind the Gap Between Individual and Collective Claims.Karin R. Jongsma & Silke Schicktanz - 2020 - American Journal of Bioethics 20 (4):28-30.
    Volume 20, Issue 4, May 2020, Page 28-30.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  7.  8
    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, (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  8.  15
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  9.  31
    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.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  10.  14
    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.
  11.  10
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  12.  21
    Return to Childhood? Against the Infantilization of People with Dementia.Karin Jongsma & Mark Schweda - 2018 - Bioethics 32 (7):414-420.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  13.  10
    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.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  14.  15
    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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  15.  1
    Losing Rather Than Choosing: A Defense of Advance Directives in the Context of Dementia.Karin Jongsma - 2020 - American Journal of Bioethics 20 (8):90-92.
    Volume 20, Issue 8, August 2020, Page 90-92.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  16.  9
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  17.  2
    Public Involvement in the Governance of Population-Level Biomedical Research: Unresolved Questions and Future Directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - forthcoming - Journal of Medical Ethics:medethics-2020-106530.
    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 should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  18.  6
    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 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 scope (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  19.  8
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  20.  14
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  21. Scientists’ Views on (Moral) Luck.Martin Sand & Karin Jongsma - forthcoming - Journal of Responsible Innovation:1-22.
    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 discusses the results of four focus groups with scientists, who were asked about their views on luck in their fields and its moral implications. (...)
    No categories
     
    Export citation  
     
    Bookmark  
  22.  10
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  23.  17
    ‚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 (...)
    No categories
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  24.  19
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark