33 found
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  1.  32
    End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making.Udo Schüklenk, Johannes J. M. van Delden, Jocelyn Downie, Sheila A. M. Mclean, Ross Upshur & Daniel Weinstock - 2011 - Bioethics 25 (s1):1-73.
    ABSTRACTThis report on end‐of‐life decision‐making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters.Chapter 1 reviews what is known about end‐of‐life care and opinions about assisted dying in Canada.Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death.Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order.Chapter 4 reviews the (...)
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  2.  18
    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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  3.  6
    Organoids as Hybrids: Ethical Implications for the Exchange of Human Tissues.Sarah N. Boers, Johannes J. M. Van Delden & Annelien L. Bredenoord - 2019 - Journal of Medical Ethics 45 (2):131-139.
    Recent developments in biotechnology allow for the generation of increasingly complex products out of human tissues, for example, human stem cell lines, synthetic embryo-like structures and organoids. These developments are coupled with growing commercial interests. Although commercialisation can spark the scientific and clinical promises, profit-making out of human tissues is ethically contentious and known to raise public concern. The traditional bioethical frames of gift versus market are inapt to capture the resulting practical and ethical complexities. Therefore, we propose an alternative (...)
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  4.  10
    Voluntary Informed Consent Is Not Risk Dependent.Sara A. S. Dekking, Rieke van der Graaf, C. Michel Zwaan & Johannes J. M. van Delden - 2019 - American Journal of Bioethics 19 (4):33-35.
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  5.  29
    What is the Best Standard for the Standard of Care in Clinical Research?Rieke van der Graaf & Johannes J. M. van Delden - 2009 - American Journal of Bioethics 9 (3):35 – 43.
    During the past decennium, one of the main issues discussed in research ethics has been focused on the care that should be provided to the control group in a clinical trial. This discussion is also called the standard of care debate . Current international research ethics guidelines contain a wide variety of standards for the standard of care—including the provision of the highest attainable, the best available, the best current, a proven , and an established effective treatment. In this article, (...)
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  6. News Media Coverage of Euthanasia: A Content Analysis of Dutch National Newspapers. [REVIEW]Rosemarie D. L. C. Bernabe, Ghislaine J. M. W. Van Thiel, Jan A. M. Raaijmakers & Johannes J. M. Van Delden - 2013 - BMC Medical Ethics 14 (1):6-.
    BackgroundThe Netherlands is one of the few countries where euthanasia is legal under strict conditions. This study investigates whether Dutch newspaper articles use the term ‘euthanasia’ according to the legal definition and determines what arguments for and against euthanasia they contain.MethodsWe did an electronic search of seven Dutch national newspapers between January 2009 and May 2010 and conducted a content analysis.ResultsOf the 284 articles containing the term ‘euthanasia’, 24% referred to practices outside the scope of the law, mostly relating to (...)
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  7.  14
    Vulnerability of Pregnant Women in Clinical Research.Indira S. E. Van der Zande, Rieke van der Graaf, Martijn A. Oudijk & Johannes J. M. Van Delden - 2017 - Journal of Medical Ethics 43 (10):657-663.
    Background Notwithstanding the need to produce evidence-based knowledge on medications for pregnant women, they remain underrepresented in clinical research. Sometimes they are excluded because of their supposed vulnerability, but there are no universally accepted criteria for considering pregnant women as vulnerable. Our aim was to explore whether and if so to what extent pregnant women are vulnerable as research subjects. Method We performed a conceptual and empirical analysis of vulnerability applied to pregnant women. Analysis A conceptual analysis supports Hurst's definition (...)
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  8.  49
    Reflective Equilibrium as a Normative Empirical Model.Ghislaine J. M. W. van Thiel & Johannes J. M. van Delden - 2010 - Ethical Perspectives 17 (2):183-202.
    People who work and live in a certain moral practice usually possess a specific form of moral wisdom. If we manage to incorporate their moral intuitions in ethical reasoning, we can arrive at judgements and theories that grasp a moral experience that generally cannot be found outside the said practice. To achieve this goal, we need a legitimate way to balance moral intuitions, ethical principles and general theories. In the present contribution, we describe a version of the model of Reflective (...)
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  9.  19
    Forgoing Treatment at the End of Life in 6 European Countries.Georg Bosshard, , Tore Nilstun, , Johan Bilsen, , Michael Norup, , Guido Miccinesi, , Johannes J. M. van Delden, Karin Faisst, , Agnes van der Heide & for the European End-of-Life - unknown
    Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.
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  10.  14
    Voluntary Informed Consent in Paediatric Oncology Research.Sara A. S. Dekking, Rieke Van Der Graaf & Johannes J. M. Van Delden - 2016 - Bioethics 30 (6):440-450.
    In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two (...)
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  11.  16
    Voluntary Informed Consent in Paediatric Oncology Research.Sara A. S. Dekking, Rieke Van Der Graaf & Johannes J. M. Van Delden - 2016 - Bioethics 30 (5):440-450.
    In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two (...)
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  12.  50
    On Using People Merely as a Means in Clinical Research.Rieke van der Graaf & Johannes J. M. van Delden - 2012 - Bioethics 26 (2):76-83.
    It is often argued that clinical research should not violate the Kantian principle that people must not be used merely as a means for the purposes of others. At first sight, the practice of clinical research itself, however, seems to violate precisely this principle: clinical research is often beneficial to future people rather than to participants; even if participants benefit, all things considered, they are exposed to discomforts which are absent both in regular care for their diseases and in other (...)
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  13.  12
    Ideals Regarding a Good Life for Nursing Home Residents with Dementia: Views of Professional Caregivers.Annemarie Kalis, Maartje H. N. Schermer & Johannes J. M. van Delden - 2005 - Nursing Ethics 12 (1):30-42.
    This study investigates what professional caregivers working in nursing homes consider to be a good life for residents suffering from dementia. Ten caregivers were interviewed; special attention was paid to the way in which they deal with conflicting values. Transcripts of the interviews were analysed qualitatively according to the method of grounded theory. The results were compared with those from a similar, earlier study on ideals found in mission statements of nursing homes. The concepts that were mentioned by most interviewed (...)
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  14.  26
    Filial Obligations to Elderly Parents: A Duty to Care? [REVIEW]Maria C. Stuifbergen & Johannes J. M. Van Delden - 2011 - Medicine, Health Care and Philosophy 14 (1):63-71.
    A continuing need for care for elderly, combined with looser family structures prompt the question what filial obligations are. Do adult children of elderly have a duty to care? Several theories of filial obligation are reviewed. The reciprocity argument is not sensitive to the parent–child relationship after childhood. A theory of friendship does not offer a correct parallel for the relationship between adult child and elderly parent. Arguments based on need or vulnerability run the risk of being unjust to those (...)
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  15.  18
    Opinions About Euthanasia and Advanced Dementia: A Qualitative Study Among Dutch Physicians and Members of the General Public.Pauline S. C. Kouwenhoven, Natasja J. H. Raijmakers, Johannes J. M. van Delden, Judith A. C. Rietjens, Donald G. Van Tol, Suzanne van de Vathorst, Nienke de Graeff, Heleen A. M. Weyers, Agnes van der Heide & Ghislaine J. M. W. van Thiel - 2015 - BMC Medical Ethics 16 (1):7.
    The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.
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  16.  8
    Vulnerability in Healthcare and Research Involving Children.Johannes J. M. van Delden & Calvin W. L. Ho - 2015 - Asian Bioethics Review 7 (2):115-125.
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  17.  4
    Responsible Data Sharing in International Health Research: A Systematic Review of Principles and Norms.Shona Kalkman, Menno Mostert, Christoph Gerlinger, Johannes J. M. Van Delden & Ghislaine J. M. W. Van Thiel - 2019 - BMC Medical Ethics 20 (1):21.
    Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation, the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we (...)
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  18.  3
    Broad Consent Is Consent for Governance.Sarah N. Boers, Johannes J. M. Van Delden & Annelien L. Bredenoord - 2015 - American Journal of Bioethics 15 (9):53-55.
  19.  5
    The Remmelink Study Two Years Later.Johannes J. M. van Delden, Loes Pijnenborg & Paul J. van der Maas - 1993 - Hastings Center Report 23 (6):24.
  20.  17
    Response to Open Peer Commentaries on “What is The Best Standard for the Standard of Care in Clinical Research?”.Rieke van der Graaf & Johannes J. M. van Delden - 2009 - American Journal of Bioethics 9 (6-7):7-8.
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  21.  14
    Reports From the Netherlands. Dances with Data.Johannes J. M. van Delden, Loes Pijnenborg & Paul J. van der Maas - 1993 - Bioethics 7 (4):323-329.
  22.  10
    How the CIOMS Guidelines Contribute to Fair Inclusion of Pregnant Women in Research.Rieke van der Graaf, Indira S. E. Van der Zande & Johannes J. M. Van Delden - forthcoming - Bioethics.
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  23.  14
    A Thick Opt-Out Is Often Sufficient.Noor A. A. Giesbertz, Annelien L. Bredenoord & Johannes J. M. van Delden - 2013 - American Journal of Bioethics 13 (4):44 - 46.
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  24.  7
    How the CIOMS Guidelines Contribute to Fair Inclusion of Pregnant Women in Research.Rieke van der Graaf, Indira S. E. van der Zande & Johannes J. M. van Delden - 2019 - Bioethics 33 (3):377-383.
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  25.  34
    Toward a “Post-Posthuman Dignity Area” in Evaluating Emerging Enhancement Technologies.J. M. van Delden Johannes, Graavanf Rieke der & L. Bredenoord Annelien - 2010 - American Journal of Bioethics 10 (7):55-57.
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  26.  14
    Conflating Scientific With Clinical Considerations.Rieke van der Graaf & Johannes J. M. van Delden - 2009 - American Journal of Bioethics 9 (9):58-59.
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  27.  16
    A Qualitative Study on Acceptable Levels of Risk for Pregnant Women in Clinical Research.Indira S. E. Van der Zande, Rieke van der Graaf, Martijn A. Oudijk & Johannes J. M. van Delden - 2017 - BMC Medical Ethics 18 (1):35.
    There is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as (...)
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  28.  15
    What Do International Ethics Guidelines Say in Terms of the Scope of Medical Research Ethics?Rosemarie D. L. C. Bernabe, Ghislaine J. M. W. Van Thiel & Johannes J. M. Van Delden - 2016 - BMC Medical Ethics 17 (1):1-18.
    BackgroundIn research ethics, the most basic question would always be, “which is an ethical issue, which is not?” Interestingly, depending on which ethics guideline we consult, we may have various answers to this question. Though we already have several international ethics guidelines for biomedical research involving human participants, ironically, we do not have a harmonized document which tells us what these various guidelines say and shows us the areas of consensus. In this manuscript, we attempted to do just that.MethodsWe extracted (...)
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  29.  14
    Old Age and Forgoing Treatment: A Nationwide Mortality Follow-Back Study in the Netherlands.Sandra Martins Pereira, H. Roeline Pasman, Agnes van der Heide, Johannes J. M. van Delden & Bregje D. Onwuteaka-Philipsen - 2015 - Journal of Medical Ethics 41 (9):766-770.
  30.  7
    Personalized assent for pediatric biobanks.Noor A. A. Giesbertz, Karen Melham, Jane Kaye, Johannes J. M. Van Delden & Annelien L. Bredenoord - 2016 - BMC Medical Ethics 17 (1):59.
    Pediatric biobanking is considered important for generating biomedical knowledge and improving health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent (...)
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  31.  8
    Participant Selection for Preventive Regenerative Medicine Trials: Ethical Challenges of Selecting Individuals at Risk: Figure 1.Sophie L. Niemansburg, Michelle G. J. L. Habets, Wouter J. A. Dhert, Johannes J. M. van Delden & Annelien L. Bredenoord - 2015 - Journal of Medical Ethics 41 (11):914-916.
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  32.  3
    Une mort tres douce.Margje H. Haverkamp & Johannes J. M. van Delden - 2006 - Medicine, Health Care and Philosophy 9 (3):367-376.
    Cette étude analyse la pensée actuelle sur les décisions-fin-de-vie (DfdV) en France d’un point de vue hollandais. Un nombre limité d’interviews avec des ‘opinion-leaders’ français est pris comme base du project. Jusqu’au jour présent, le domaine des DfdV en France a été troublé en l’absence de définitions et de législation plus spécifiques. Les médecins français pourront faire face à un dilemme en soignant un malade mourant, pris en étau entre le caractère illégal officiel de l’euthanasie d’une part et l’obligation professionnelle (...)
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  33. Convergent Trends in Modern Medical Ethics : Medicine-Based Ethics and Human Rights.Johannes J. M. van Delden - 2008 - In Ronald Michael Green, Aine Donovan & Steven A. Jauss (eds.), Global Bioethics: Issues of Conscience for the Twenty-First Century. Oxford University Press.