27 found
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  1.  29
    Trust and the Goldacre Review: why trusted research environments are not about trust.Mackenzie Graham, Richard Milne, Paige Fitzsimmons & Mark Sheehan - 2023 - Journal of Medical Ethics 49 (10):670-673.
    The significance of big data for driving health research and improvements in patient care is well recognised. Along with these potential benefits, however, come significant challenges, including those concerning the sharing and linkage of health and social care records. Recently, there has been a shift in attention towards a paradigm of data sharing centred on the ‘trusted research environment’ (TRE). TREs are being widely adopted by the UK’s health data initiatives including Health Data Research UK (HDR UK),1 Our Future Health2 (...)
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  2.  57
    Assessing Decision-Making Capacity in the Behaviorally Nonresponsive Patient With Residual Covert Awareness.Andrew Peterson, Lorina Naci, Charles Weijer, Damian Cruse, Davinia Fernández-Espejo, Mackenzie Graham & Adrian M. Owen - 2013 - American Journal of Bioethics Neuroscience 4 (4):3-14.
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  3.  17
    Data for sale: trust, confidence and sharing health data with commercial companies.Mackenzie Graham - 2023 - Journal of Medical Ethics 49 (7):515-522.
    Powered by ‘big health data’ and enormous gains in computing power, artificial intelligence and related technologies are already changing the healthcare landscape. Harnessing the potential of these technologies will necessitate partnerships between health institutions and commercial companies, particularly as it relates to sharing health data. The need for commercial companies to be trustworthy users of data has been argued to be critical to the success of this endeavour. I argue that this approach is mistaken. Our interactions with commercial companies need (...)
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  4.  52
    An Ethics of Welfare for Patients Diagnosed as Vegetative With Covert Awareness.Mackenzie Graham, Charles Weijer, Damian Cruse, Davinia Fernandez-Espejo, Teneille Gofton, Laura E. Gonzalez-Lara, Andrea Lazosky, Lorina Naci, Loretta Norton, Andrew Peterson, Kathy N. Speechley, Bryan Young & Adrian M. Owen - 2015 - American Journal of Bioethics Neuroscience 6 (2):31-41.
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  5.  52
    A Fate Worse Than Death? The Well-Being of Patients Diagnosed as Vegetative With Covert Awareness.Mackenzie Graham - 2017 - Ethical Theory and Moral Practice 20 (5):1005-1020.
    Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of these patients? How are their lives going, for them? It has been argued that on a reasonable conception of well-being, these patients are faring so poorly that it may be in their best interests not to continue existing. I argue against this claim. Standard conceptions of well-being do not clearly support the (...)
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  6.  53
    Can they Feel? The Capacity for Pain and Pleasure in Patients with Cognitive Motor Dissociation.Mackenzie Graham - 2018 - Neuroethics 12 (2):153-169.
    Unresponsive wakefulness syndrome is a disorder of consciousness wherein a patient is awake, but completely non-responsive at the bedside. However, research has shown that a minority of these patients remain aware, and can demonstrate their awareness via functional neuroimaging; these patients are referred to as having ‘cognitive motor dissociation’. Unfortunately, we have little insight into the subjective experiences of these patients, making it difficult to determine how best to promote their well-being. In this paper, I argue that the capacity to (...)
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  7.  72
    Acknowledging awareness: informing families of individual research results for patients in the vegetative state.Mackenzie Graham, Charles Weijer, Andrew Peterson, Lorina Naci, Damian Cruse, Davinia Fernández-Espejo, Laura Gonzalez-Lara & Adrian M. Owen - 2015 - Journal of Medical Ethics 41 (7):534-538.
  8.  77
    Ethics of neuroimaging after serious brain injury.Charles Weijer, Andrew Peterson, Fiona Webster, Mackenzie Graham, Damian Cruse, Davinia Fernández-Espejo, Teneille Gofton, Laura E. Gonzalez-Lara, Andrea Lazosky, Lorina Naci, Loretta Norton, Kathy Speechley, Bryan Young & Adrian M. Owen - 2014 - BMC Medical Ethics 15 (1):41.
    Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques (...)
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  9.  18
    Precedent Autonomy and Surrogate Decisionmaking After Severe Brain Injury.Mackenzie Graham - 2020 - Cambridge Quarterly of Healthcare Ethics 29 (4):511-526.
    Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by (...)
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  10.  47
    Informed consent for functional MRI research on comatose patients following severe brain injury: balancing the social benefits of research against patient autonomy.Tommaso Bruni, Mackenzie Graham, Loretta Norton, Teneille Gofton, Adrian M. Owen & Charles Weijer - 2019 - Journal of Medical Ethics 45 (5):299-303.
    Functional MRI shows promise as a candidate prognostication method in acutely comatose patients following severe brain injury. However, further research is needed before this technique becomes appropriate for clinical practice. Drawing on a clinical case, we investigate the process of obtaining informed consent for this kind of research and identify four ethical issues. After describing each issue, we propose potential solutions which would make a patient’s participation in research compatible with her rights and interests. First, we defend the need for (...)
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  11. Governing AI-Driven Health Research: Are IRBs Up to the Task?Phoebe Friesen, Rachel Douglas-Jones, Mason Marks, Robin Pierce, Katherine Fletcher, Abhishek Mishra, Jessica Lorimer, Carissa Véliz, Nina Hallowell, Mackenzie Graham, Mei Sum Chan, Huw Davies & Taj Sallamuddin - 2021 - Ethics and Human Research 2 (43):35-42.
    Many are calling for concrete mechanisms of oversight for health research involving artificial intelligence (AI). In response, institutional review boards (IRBs) are being turned to as a familiar model of governance. Here, we examine the IRB model as a form of ethics oversight for health research that uses AI. We consider the model's origins, analyze the challenges IRBs are facing in the contexts of both industry and academia, and offer concrete recommendations for how these committees might be adapted in order (...)
     
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  12.  19
    A Just Standard: The Ethical Management of Incidental Findings in Brain Imaging Research.Mackenzie Graham, Nina Hallowell & Julian Savulescu - 2021 - Journal of Law, Medicine and Ethics 49 (2):269-281.
    Neuroimaging research regularly yields “incidental findings”: observations of potential clinical significance in healthy volunteers or patients, but which are unrelated to the purpose or variables of the study.
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  13.  22
    Residual Cognitive Capacities in Patients With Cognitive Motor Dissociation, and Their Implications for Well-Being.Mackenzie Graham - 2021 - Journal of Medicine and Philosophy 46 (6):729-757.
    Patients with severe disorders of consciousness are thought to be unaware of themselves or their environment. However, research suggests that a minority of patients diagnosed as having a disorder of consciousness remain aware. These patients, designated as having “cognitive motor dissociation”, can demonstrate awareness by imagining specific tasks, which generates brain activity detectable via functional neuroimaging. The discovery of consciousness in these patients raises difficult questions about their well-being, and it has been argued that it would be better for these (...)
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  14.  23
    Burying our mistakes: Dealing with prognostic uncertainty after severe brain injury.Mackenzie Graham - 2020 - Bioethics 34 (6):612-619.
    Prognosis after severe brain injury is highly uncertain, and decisions to withhold or withdraw life‐sustaining treatment are often made prematurely. These decisions are often driven by a desire to avoid a situation where the patient becomes ‘trapped’ in a condition they would find unacceptable. However, this means that a proportion of patients who would have gone on to make a good recovery, are allowed to die. I propose a shift in practice towards the routine provision of aggressive care, even in (...)
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  15.  32
    Working for the Weekend Is Not Meaningful Work.Charles Weijer & Mackenzie Graham - 2019 - American Journal of Bioethics 19 (9):48-50.
    Volume 19, Issue 9, September 2019, Page 48-50.
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  16.  26
    From Awareness to Prognosis: Ethical Implications of Uncovering Hidden Awareness in Behaviorally Nonresponsive Patients.Mackenzie Graham, Eugene Wallace, Colin Doherty, Alison Mccann & Lorina Naci - 2019 - Cambridge Quarterly of Healthcare Ethics 28 (4):616-631.
    :Long-term patient outcomes after severe brain injury are highly variable, and reliable prognostic indicators are urgently needed to guide treatment decisions. Functional neuroimaging is a highly sensitive method of uncovering covert cognition and awareness in patients with prolonged disorders of consciousness, and there has been increased interest in using it as a research tool in acutely brain injured patients. When covert awareness is detected in a research context, this may impact surrogate decisionmaking—including decisions about life-sustaining treatment—even though the prognostic value (...)
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  17.  24
    Of Mice-Rats and Pig-Men: Ethical Issues in the Development of Human/Nonhuman Chimeras.Mackenzie Graham - 2023 - In Erick Valdés & Juan Alberto Lecaros (eds.), Handbook of Bioethical Decisions. Volume I: Decisions at the Bench. Springer Verlag. pp. 527-547.
    The modern biological definition of a chimera is a single organism composed of cells with multiple distinct genotypes. Chimeras combining human and nonhuman cells are invaluable for various kinds of research, providing a platform for the study of human cell development while avoiding the ethical issues involved in conducting this research on human subjects. There is also the possibility that human/nonhuman chimeras could one day be used to produce human organs for transplant. Yet human/nonhuman chimeras raise a number of unique (...)
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  18. Well-Being After Severe Brain Injury: What Counts as Good Recovery?Mackenzie Graham & Lorina Naci - 2021 - Cambridge Quarterly of Healthcare Ethics 30 (4):613-622.
    Disorders of consciousness continue to profoundly challenge both families and medical professionals. Once a brain-injured patient has been stabilized, questions turn to the prospect of recovery. However, what “recovery” means in the context of patients with prolonged DOC is not always clear. Failure to recognize potential differences of interpretation—and the assumptions about the relationship between health and well-being that underlie these differences—can inhibit communication between surrogate decisionmakers and a patient’s clinical team, and make it difficult to establish the goals of (...)
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  19.  9
    Getting rights right: implementing ‘Martha’s Rule’.Mackenzie Graham, Isabel Hanson, James Hart, Peter Young, Sapfo Lignou, Michael J. Parker & Mark Sheehan - forthcoming - Journal of Medical Ethics.
    The UK government has recently committed to adopting a new policy—dubbed ‘Martha’s Rule’—which has been characterised as providing patients the right to rapidly access a second clinical opinion in urgent or contested cases. Support for the rule emerged following the death of Martha Mills in 2021, after doctors failed to admit her to intensive care despite concerns raised by her parents. We argue that framing this issue in terms of patient rights is not productive, and should be avoided. Insofar as (...)
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  20.  24
    Fear of Dementia and the Obligation to Provide Aggregate Research Results to Study Participants.Mackenzie Graham, Francesca Farina, Craig W. Ritchie, Brian Lawlor & Lorina Naci - 2022 - Cambridge Quarterly of Healthcare Ethics 31 (4):498-505.
    A general obligation to make aggregate research results available to participants has been widely supported in the bioethics literature. However, dementia research presents several challenges to this perspective, particularly because of the fear associated with developing dementia. The authors argue that considerations of respect for persons, beneficence, and justice fail to justify an obligation to make aggregate research results available to participants in dementia research. Nevertheless, there are positive reasons in favor of making aggregate research results available; when the decision (...)
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  21.  17
    TREs are still not about trust.Mackenzie Graham, Richard Milne, Paige Fitzsimmons & Mark Sheehan - 2023 - Journal of Medical Ethics 49 (9):658-660.
    In our recent paper ‘Trust and the Goldacre Review: Why TREs are not about trust’1 we argue that trusted research environments (TREs) reduce the need for trust in the use and sharing of health data, and that referring to these data storage systems as ‘trusted’ raises a number of concerns. Recent replies to our paper have raised several objections to this argument. In this reply, we seek to build on the arguments presented in our original paper, address some of the (...)
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  22.  14
    Domains of Well-Being in Minimally Conscious Patients: Illuminating a Persistent Problem.Mackenzie Graham - 2018 - American Journal of Bioethics Neuroscience 9 (2):128-130.
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  23.  10
    Fear of Dementia and the Obligation to Provide Aggregate Research Results to Study Participants—ADDENDUM.Mackenzie Graham, Francesca Farina, Craig W. Ritchie, Brian Lawlor & Lorina Naci - 2023 - Cambridge Quarterly of Healthcare Ethics 32 (2):306-306.
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  24.  32
    More Harm Than Good: Neurotechnological Thought Apprehension in Forensic Psychiatry.Mackenzie Graham & Phoebe Friesen - 2019 - American Journal of Bioethics Neuroscience 10 (1):17-19.
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  25.  24
    The Cost of Compassion: Resource Allocation and Disorders of Consciousness.Mackenzie Graham - 2021 - American Journal of Bioethics Neuroscience 12 (2-3):159-162.
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  26.  18
    Taking it to the bank: the ethical management of individual findings arising in secondary research.Mackenzie Graham, Nina Hallowell, Berge Solberg, Ari Haukkala, Joanne Holliday, Angeliki Kerasidou, Thomas Littlejohns, Elizabeth Ormondroyd, John-Arne Skolbekken & Marleena Vornanen - 2021 - Journal of Medical Ethics 47 (10):689-696.
    A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research, it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual (...)
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  27.  20
    Memory During the Presumed Vegetative State: Implications for Patient Quality of Life.Nicola Taylor, Mackenzie Graham, Mark Delargy & Lorina Naci - 2020 - Cambridge Quarterly of Healthcare Ethics 29 (4):501-510.
    A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state (VS), demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life (QoL). We describe a patient who, following emergence from a state of complete behavioral unresponsiveness (...)
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