28 found
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  1.  52
    Ethics review of big data research: What should stay and what should be reformed?Effy Vayena, Minerva Rivas Velarde, Mahsa Shabani, Gabrielle Samuel, Camille Nebeker, S. Matthew Liao, Peter Kleist, Walter Karlen, Jeff Kahn, Phoebe Friesen, Bobbie Farsides, Edward S. Dove, Alessandro Blasimme, Mark Sheehan, Marcello Ienca & Agata Ferretti - 2021 - BMC Medical Ethics 22 (1):1-13.
    BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map (...)
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  2.  43
    Tailoring consent to context: designing an appropriate consent process for a biomedical study in a low income setting.Fasil Tekola, Susan J. Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey - unknown
    Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...)
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  3.  85
    Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study.Fasil Tekola, Susan Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey - 2009 - BMC Medical Ethics 10 (1):13-.
    BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...)
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  4.  9
    Ethical preparedness and developments in genomic healthcare.Bobbie Farsides & Anneke M. Lucassen - forthcoming - Journal of Medical Ethics.
    Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and (...)
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  5.  40
    A mixed-methods study on perceptions towards use of Rapid Ethical Assessment to improve informed consent processes for health research in a low-income setting.Adamu Addissie, Gail Davey, Melanie J. Newport, Thomas Addissie, Hayley MacGregor, Yeweyenhareg Feleke & Bobbie Farsides - 2014 - BMC Medical Ethics 15 (1):35.
    Rapid Ethical Assessment (REA) is a form of rapid ethnographic assessment conducted at the beginning of research project to guide the consent process with the objective of reconciling universal ethical guidance with specific research contexts. The current study is conducted to assess the perceived relevance of introducing REA as a mainstream tool in Ethiopia.
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  6.  6
    The UK’s 100,000 Genomes Project: manifesting policymakers’ expectations.Gabrielle Natalie Samuel & Bobbie Farsides - 2017 - New Genetics and Society 36 (4):336-353.
    The UK’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the work of those associated with Genomics England – the company established by the Department (...)
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  7.  63
    Examining Ethics in Practice: health service professionals' evaluations of in-hospital ethics seminars.Priscilla Alderson, Bobbie Farsides & Clare Williams - 2002 - Nursing Ethics 9 (5):508-521.
    This article reviews practitioners’ evaluations of in-hospital ethics seminars. A qualitative study included 11 innovative in-hospital ethics seminars, preceded and followed by interviews with most participants. The settings were obstetric, neonatal and haematology units in a teaching hospital and a district general hospital in England. Fifty-six health service staff in obstetric, neonatal, haematology, and related community and management services participated; 12 attended two seminars, giving a total of 68 attendances and 59 follow-up evaluation interviews. The 11 seminars facilitated by an (...)
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  8.  30
    Cluster randomized trial assessing the effects of rapid ethical assessment on informed consent comprehension in a low-resource setting.Adamu Addissie, Serebe Abay, Yeweyenhareg Feleke, Melanie Newport, Bobbie Farsides & Gail Davey - 2016 - BMC Medical Ethics 17 (1):1.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  9.  19
    What is good medical ethics? A very personal response to a difficult question.Bobbie Farsides - 2015 - Journal of Medical Ethics 41 (1):52-55.
    A personal reflection upon a career in medical ethics leads to four conclusions on what makes for 'good medical ethics'. Good medical ethics is practical in approach, philosophically well grounded, cross disciplinary, and while it might not be a necessary feature, the experience of the author suggests that it is the work of 'good people'.
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  10. Welcome to Clinical Ethics.Bobbie Farsides & Sue Eckstein - 2006 - Clinical Ethics 1 (1):1-2.
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  11.  62
    Consenting futures: professional views on social, clinical and ethical aspects of information feedback to embryo donors in human embryonic stem cell research.Kathryn Ehrich, Clare Williams & Bobbie Farsides - 2010 - Clinical Ethics 5 (2):77-85.
    This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas of (...)
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  12.  12
    Why Young People Participate in Clinical Trials and the Implications for Research Governance.Katharine Wright, Seil Collins & Bobbie Farsides - 2015 - American Journal of Bioethics 15 (11):22-23.
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  13. An organ for change.Bobbie Farsides & Sue Eckstein - 2008 - Clinical Ethics 3 (2):51-52.
  14. To PGD or not to PGD?Bobbie Farsides - 2007 - Clinical Ethics 2 (3):109-109.
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  15. The Virtual Ethics Committee and beyond.Bobbie Farsides & Sue Eckstein - 2007 - Clinical Ethics 2 (4):163-163.
  16. The end of an era.Bobbie Farsides & Sue Eckstein - 2011 - Clinical Ethics 6 (4):153-153.
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  17. Farewell to a czar.Bobbie Farsides - 2011 - Clinical Ethics 6 (3):109-110.
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  18.  48
    A mixed-methods study on perceptions towards use of Rapid Ethical Assessment to improve health research informed consent processes in a low-income setting.Adamu Addissie, Gail Davey, Yeweyenhareg Feleke, Thomas Addissie, Hayley Macgregor, Melanie Newport & Bobbie Farsides - unknown
    Background Rapid Ethical Assessment is a form of rapid ethnographic assessment conducted at the beginning of research project to guide the consent process with the objective of reconciling universal ethical guidance with specific research contexts. The current study is conducted to assess the perceived relevance of introducing REA as a mainstream tool in Ethiopia. Methods Mixed methods research using a sequential explanatory approach was conducted from July to September 2012, including 241 cross-sectional, self-administered and 19 qualitative, in-depth interviews among health (...)
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  19.  66
    A new series for Volume Three.Bobbie Farsides & Sue Eckstein - 2008 - Clinical Ethics 3 (1):1-1.
  20.  54
    Courage, compassion and communication: young people and Huntington's disease.Bobbie Farsides - 2011 - Clinical Ethics 6 (2):55-55.
  21.  57
    Think before you click: setting personal boundaries for the acquisition of medical information.Bobbie Farsides - 2010 - Clinical Ethics 5 (4):171-171.
  22.  40
    Tomorrow's doctors - the place of creativity.Bobbie Farsides & Sue Eckstein - 2009 - Clinical Ethics 4 (1):1-2.
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  23.  12
    Composition and capacity of Institutional Review Boards, and challenges experienced by members in ethics review processes in Addis Ababa, Ethiopia: An exploratory qualitative study.Yemisrach Zewdie Seralegne, Cynthia Khamala Wangamati, Rosemarie D. L. C. Bernabe, Bobbie Farsides, Abraham Aseffa & Martha Zewdie - 2022 - Developing World Bioethics 23 (1):50-58.
    Few studies in sub-Saharan Africa evaluate Institutional Review Boards (IRBs) capacity. The study aims to explore the composition of IRBs, training, and challenges experienced in the ethics review processes by members of research institutions and universities in Addis Ababa, Ethiopia. Our findings indicate that most IRBs members were trained on research ethics and good clinical practice. However, majority perceived the trainings as basic. IRB members faced several challenges including: investigators wanting rapid review; time pressure; investigators not following checklists; limited expertise (...)
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  24.  11
    Composition and capacity of Institutional Review Boards, and challenges experienced by members in ethics review processes in Addis Ababa, Ethiopia: An exploratory qualitative study.Yemisrach Zewdie Seralegne, Cynthia Khamala Wangamati, Rosemarie D. L. C. Bernabe, Bobbie Farsides, Abraham Aseffa & Martha Zewdie - 2022 - Developing World Bioethics 23 (1):50-58.
    Few studies in sub-Saharan Africa evaluate Institutional Review Boards (IRBs) capacity. The study aims to explore the composition of IRBs, training, and challenges experienced in the ethics review processes by members of research institutions and universities in Addis Ababa, Ethiopia. Our findings indicate that most IRBs members were trained on research ethics and good clinical practice. However, majority perceived the trainings as basic. IRB members faced several challenges including: investigators wanting rapid review; time pressure; investigators not following checklists; limited expertise (...)
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  25.  13
    Children and Clinical Research: A Response to Chwang.Katharine Wright & Bobbie Farsides - 2015 - Bioethics 30 (1):56-57.
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  26.  25
    Public trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project. [REVIEW]Gabrielle Natalie Samuel & Bobbie Farsides - 2018 - Medicine, Health Care and Philosophy 21 (2):159-168.
    The UK Chief Medical Officer’s 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK’s National Health Service. This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK’s 100,000 Genomes Project —the catalyst for Generation Genome, and for bringing genomics into the NHS—is negotiating these ethical (...)
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  27.  29
    Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project. [REVIEW]Sandi Dheensa, Gabrielle Samuel, Anneke M. Lucassen & Bobbie Farsides - 2018 - Journal of Medical Ethics 44 (6):397-403.
    Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional (...)
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  28.  27
    Towards the applied: the construction of ethical positions in stem cell translational research. [REVIEW]Alan Cribb, Steven Wainwright, Clare Williams, Bobbie Farsides & Mike Michael - 2007 - Medicine, Health Care and Philosophy 11 (3):351-361.
    This paper aims to make an empirically informed analytical contribution to the development of a more socially embedded bioethics. Drawing upon 10 interviews with cutting edge stem cell researchers (5 scientists and 5 clinicians) it explores and illustrates the ways in which the role positions of translational researchers are shaped by the ‘normative structures’ of science and medicine respectively and in combination. The empirical data is used to illuminate three overlapping themes of ethical relevance: what matters in stem cell research, (...)
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