59 found
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  1.  8
    Patients’ and Public Views and Attitudes Towards the Sharing of Health Data for Research: A Narrative Review of the Empirical Evidence.Shona Kalkman, Johannes van Delden, Amitava Banerjee, Benoît Tyl, Menno Mostert & Ghislaine van Thiel - 2022 - Journal of Medical Ethics 48 (1):3-13.
    Introduction International sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research. Methods We performed a narrative review of the empirical (...)
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  2.  35
    Two Decades of Research on Euthanasia From the Netherlands. What Have We Learnt and What Questions Remain?Judith Ac Rietjens, Paul J. van der Maas, Bregje D. Onwuteaka-Philipsen, Johannes Jm van Delden & Agnes van der Heide - 2009 - Journal of Bioethical Inquiry 6 (3):271-283.
    Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown (...)
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  3.  57
    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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  4.  36
    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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  5.  20
    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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  6.  32
    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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  7.  12
    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.
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  8.  5
    Some Unresolved Ethical Challenges in Healthcare Decision-Making: Navigating Family Involvement.Sumytra Menon, Vikki A. Entwistle, Alastair V. Campbell & Johannes J. M. van Delden - 2020 - Asian Bioethics Review 12 (1):27-36.
    Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the (...)
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  9.  72
    News Media Coverage of Euthanasia: A Content Analysis of Dutch National Newspapers.Judith Ac Rietjens, Natasja Jh Raijmakers, Pauline Sc Kouwenhoven, Clive Seale, Ghislaine Jmw van Thiel, Margo Trappenburg, Johannes Jm van Delden & Agnes van der Heide - 2013 - BMC Medical Ethics 14 (1):11.
    The 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.
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  10.  53
    Reporting of Euthanasia and Physician-Assisted Suicide in the Netherlands: Descriptive Study.Hilde Buiting, Johannes van Delden, Bregje Onwuteaka-Philpsen, Judith Rietjens, Mette Rurup, Donald van Tol, Joseph Gevers, Paul van der Maas & Agnes van der Heide - 2009 - BMC Medical Ethics 10 (1):18-.
    BackgroundAn important principle underlying the Dutch Euthanasia Act is physicians' responsibility to alleviate patients' suffering. The Dutch Act states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care. These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the presence of reasonable alternatives, consultation of another physician and the applied method of ending life. To demonstrate their compliance, the Act requires physicians (...)
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  11.  83
    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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  12.  11
    The Social Value of Clinical Research.Michelle Gjl Habets, Johannes Jm van Delden & AnneLien L. Bredenoord - 2014 - BMC Medical Ethics 15 (1):66.
    International documents on ethical conduct in clinical research have in common the principle that potential harms to research participants must be proportional to anticipated benefits. The anticipated benefits that can justify human research consist of direct benefits to the research participant, and societal benefits, also called social value. In first-in-human research, no direct benefits are expected and the benefit component of the risks-benefit assessment thus merely exists in social value. The concept social value is ambiguous by nature and is used (...)
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  13.  35
    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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  14.  40
    Clarifying Appeals to Dignity in Medical Ethics From an Historical Perspective.Rieke van der Graaf & Johannes Jm van Delden - 2009 - Bioethics 23 (3):151-160.
  15.  15
    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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  16.  6
    How Should the ‘Privilege’ in Therapeutic Privilege Be Conceived When Considering the Decision-Making Process for Patients with Borderline Capacity?Sumytra Menon, Vikki Entwistle, Alastair Vincent Campbell & Johannes J. M. Van Delden - 2021 - Journal of Medical Ethics 47 (1):47-50.
    Therapeutic privilege is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be (...)
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  17.  28
    Assistance in Dying for Older People Without a Serious Medical Condition Who Have a Wish to Die: A National Cross-Sectional Survey.Natasja J. H. Raijmakers, Agnes van der Heide, Pauline S. C. Kouwenhoven, Ghislaine J. M. W. van Thiel, Johannes J. M. van Delden & Judith A. C. Rietjens - 2015 - Journal of Medical Ethics 41 (2):145-150.
  18.  8
    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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  19.  24
    The Social Value of Pragmatic Trials.Shona Kalkman, Ghislaine van Thiel, Rieke van der Graaf, Mira Zuidgeest, Iris Goetz, Diederick Grobbee & Johannes van Delden - 2017 - Bioethics 31 (2):136-143.
    Pragmatic trials aim to directly inform health care decision-making through the collection of so-called ‘real world data’ from observations of comparative treatment effects in clinical practice. In order to ensure the applicability and feasibility of a pragmatic trial, design features may be necessary that deviate from standard research ethics requirements. Examples are traditional requirements to seek written informed consent and to perform extensive data and safety monitoring. Proposals for deviations from standard research ethics practice have resulted in controversy about their (...)
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  20.  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 - 2019 - Bioethics 33 (3):377-383.
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  21.  32
    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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  22.  13
    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.  36
    Reflective Equilibrium as a Normative Empirical Model.Ghislaine Jmw| van Delden van Thiel & Johannes Jm van Delden - 2010 - Ethical Perspectives 17 (2):183.
    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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  24. 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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  25.  26
    Palliative Sedation: Not Just Normal Medical Practice. Ethical Reflections on the Royal Dutch Medical Association's Guideline on Palliative Sedation.Rien Janssens, Johannes J. M. van Delden & Guy A. M. Widdershoven - 2012 - Journal of Medical Ethics 38 (11):664-668.
    The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...)
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  26.  5
    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.
  27. How Should the Precautionary Principle Apply to Pregnant Women in Clinical Research?Indira S. E. van der Zande, Rieke van der Graaf, Martijin A. Oudijk & Johannes J. M. van Delden - 2021 - Journal of Medicine and Philosophy 46 (5):516-529.
    The precautionary principle is often invoked in relation to pregnant women and may be one of the underlying reasons for their continuous underrepresentation in clinical research. The principle is appealing, because potential fetal harm as a result of research participation is considered to be serious and irreversible. In our paper, we explore through conceptual analysis whether and if so how the precautionary principle should apply to pregnant women. We argue that the principle is a decision-making strategy underlying risk-benefit decisions in (...)
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  28.  47
    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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  29.  10
    Public and Physicians’ Support for Euthanasia in People Suffering From Psychiatric Disorders: A Cross-Sectional Survey Study.Kirsten Evenblij, H. Roeline W. Pasman, Agnes van der Heide, Johannes J. M. van Delden & Bregje D. Onwuteaka-Philipsen - 2019 - BMC Medical Ethics 20 (1):1-10.
    Although euthanasia and assisted suicide in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. A survey was distributed amongst a random sample of Dutch 2641 citizens and 3000 physicians. Acceptance and conceivability of (...)
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  30.  57
    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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  31.  24
    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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  32.  24
    Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy.Annelien L. Bredenoord & Johannes Jm van Delden - 2012 - American Journal of Bioethics 12 (10):10-12.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 10-12, October 2012.
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  33.  35
    The Fiduciary Obligation of the Physician-Researcher in Phase IV Trials.Rosemarie Dlc Bernabe, Ghislaine Jmw van Thiel, Jan Am Raaijmakers & Johannes Jm van Delden - 2014 - BMC Medical Ethics 15 (1):11.
    BackgroundIn this manuscript, we argue that within the context of phase IV, physician-researchers retain their fiduciary obligation to treat the patient-participants.DiscussionWe first clarify why the perspective that research ethics ought to be differentiated from clinical ethics is not applicable in phase IV, and therefore, why therapeutic orientation is most convivial in this phase. Next, assuming that ethics guidelines may be representative of common morality, we show that ethics guidelines see physician-researchers primarily as physicians and only secondarily as researchers. We then (...)
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  34.  27
    Estimating the Potential Life-Shortening Effect of Continuous Sedation Until Death: A Comparison Between Two Approaches.Sophie Bruinsma, Judith Rietjens, Siebe Swart, Roberto Perez & Johannes van Delden - 2014 - Journal of Medical Ethics 40 (7):458-462.
    Context In some cases, physicians estimate that continuous sedation until death may have a life-shortening effect. The accuracy of these estimations can be questioned.Aim The aim of this study is to compare two approaches to estimate the potential life-shortening effect of continuous sedation until death.Methods In 2008, 370 Dutch physicians filled out a questionnaire and reported on their last patient who received continuous sedation until death. The potential life-shortening effect of continuous sedation was estimated through a direct approach and an (...)
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  35.  25
    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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  36.  16
    Toward a “Post-Posthuman Dignity Area” in Evaluating Emerging Enhancement Technologies.Annelien L. Bredenoord, Rieke van der Graaf & Johannes Jm van Delden - 2010 - American Journal of Bioethics 10 (7):55-57.
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  37.  8
    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.
  38.  19
    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.
  39.  16
    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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  40.  26
    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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  41.  41
    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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  42.  17
    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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  43.  18
    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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  44.  19
    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.
  45.  21
    The Need to Explicate the Ethical Evaluation Tools to Avoid Ethical Inflation.Rosemarie Bernabe, Ghislaine van Thiel, Jan Raaijmakers & Johannes van Delden - 2009 - American Journal of Bioethics 9 (11):56-58.
  46.  18
    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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  47.  17
    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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  48.  11
    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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  49.  4
    The Social Licence for Data-Intensive Health Research: Towards Co-Creation, Public Value and Trust.Johannes J. M. van Delden, Menno Mostert, Ghislaine J. M. W. van Thiel, Shona Kalkman & Sam H. A. Muller - 2021 - BMC Medical Ethics 22 (1):1-9.
    BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...)
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  50.  13
    Ethics and the Marketing Authorization of Pharmaceuticals: What Happens to Ethical Issues Discovered Post-Trial and Pre-Marketing Authorization?Rosemarie D. L. C. Bernabe, Ghislaine J. M. W. van Thiel, Nancy S. Breekveldt, Christine C. Gispen & Johannes J. M. van Delden - 2020 - BMC Medical Ethics 21 (1):1-8.
    Background In the EU, clinical assessors, rapporteurs and the Committee for Medicinal Products for Human Use are obliged to assess the ethical aspects of a clinical development program and include major ethical flaws in the marketing authorization deliberation processes. To this date, we know very little about the manner that these regulators put this obligation into action. In this paper, we intend to look into the manner and the extent that ethical issues discovered during inspection have reached the deliberation processes. (...)
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