8 found
Order:
  1.  17
    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 (...)
    No categories
    Direct download (4 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   3 citations  
  2.  40
    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.
    Direct download (11 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  3.  87
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   9 citations  
  4.  29
    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.
  5. 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 (...)
    Direct download (20 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  6.  29
    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 (...)
    Direct download (8 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  7.  16
    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. (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  8.  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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark