Switch to: References

Add citations

You must login to add citations.
  1. Participatory development of CURA, a clinical ethics support instrument for palliative care.Suzanne Metselaar, Guy Widdershoven, H. Roeline Pasman & Malene Vera van Schaik - 2022 - BMC Medical Ethics 23 (1):1-12.
    BackgroundExisting clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. MethodWe used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the (...)
    Download  
     
    Export citation  
     
    Bookmark   7 citations  
  • The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data.Gabrielle Samuel, Gemma E. Derrick & Thed van Leeuwen - 2019 - Minerva 57 (3):317-343.
    This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it (...)
    Download  
     
    Export citation  
     
    Bookmark   4 citations  
  • Risk Management Practices of Health Research Ethics Committees May Undermine Citizen Science to Address Basic Human Rights.Penelope Hawe, Samantha Rowbotham, Leah Marks & Jonathan Casson - 2022 - Public Health Ethics 15 (2):194-199.
    Lack of supportive workplaces may be depriving babies and mothers of the health advantages of breastfeeding. This citizen science pilot project set out to engage women in photographing and sharing information on the available facilities for breastfeeding and expressing and storing breastmilk in Australian workplaces. While some useful insights were gained, the project failed in the sense that 234 people ‘liked’ the project Facebook page set up to recruit participants, but only nine photographs were submitted. The heaviest loss of participation (...)
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Collaborative partnership and the social value of clinical research: a qualitative secondary analysis.Sanna-Maria Nurmi, Arja Halkoaho, Mari Kangasniemi & Anna-Maija Pietilä - 2017 - BMC Medical Ethics 18 (1):57.
    Protecting human subjects from being exploited is one of the main ethical challenges for clinical research. However, there is also a responsibility to protect and respect the communities who are hosting the research. Recently, attention has focused on the most efficient way of carrying out clinical research, so that it benefits society by providing valuable research while simultaneously protecting and respecting the human subjects and the communities where the research is conducted. Collaboration between partners plays an important role and that (...)
    Download  
     
    Export citation  
     
    Bookmark   3 citations  
  • Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better.Mila Petrova & Stephen Barclay - 2019 - BMC Medical Ethics 20 (1):7.
    The red tape and delays around research ethics and governance approvals frequently frustrate researchers yet, as the lesser of two evils, are largely accepted as unavoidable. Here we quantify aspects of the research ethics and governance approvals for one interview- and questionnaire-based study conducted in England which used the National Health Service procedures and the electronic Integrated Research Application System. We demonstrate the enormous impact of existing approvals processes on costs of studies, including opportunity costs to focus on the substantive (...)
    Download  
     
    Export citation  
     
    Bookmark   7 citations  
  • Fostering ethical reflection on health data research through co-design: A pilot study.Joanna Sleigh & Julia Amann - 2022 - International Journal of Ethics Education 7 (2):325-342.
    Health research ethics training is highly variable, with some researchers receiving little to none, which is why ethical frameworks represent critical tools for ethical deliberation and guiding responsible practice. However, these documents' voluntary and abstract nature can leave health researchers seeking more operationalised guidance, such as in the form of checklists, even though this approach does not support reflection on the meaning of principles nor their implications. In search of more reflective and participatory practices in a pandemic context with distance (...)
    Download  
     
    Export citation  
     
    Bookmark   1 citation