Reconciling Supported Decision Making with Shared Decision Making in the Context of Potential Vulnerability.Devora Shapiro,Lauren R. Sankary &Paul J.Ford -2021 -American Journal of Bioethics 21 (11):35-37.detailsSupported decision making, as outlined by Peterson et al. highlights real-world challenges in the messy context of clinical care. We agree with Peterson et al. that patients...
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Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access.W. Baird,R. Jackson,H.Ford,N. Evangelou,M. Busby,P. Bull &J. Zajicek -2009 -Journal of Medical Ethics 35 (2):92-96.detailsObjective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK. Design: Qualitative study using focus groups (10) and interviews (13). Setting: England and Northern Ireland. Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals. Results: People with MS expressed open and altruistic views towards the use of their personal (...) information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant’s proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register. Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided. (shrink)
Pragmatism and the Importance of Interdisciplinary Teams in Investigating Personality Changes Following DBS.Cynthia S. Kubu,Paul J.Ford,Joshua A. Wilt,Amanda R. Merner,Michelle Montpetite,Jaclyn Zeigler &Eric Racine -2019 -Neuroethics 14 (1):95-105.detailsGilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)
Investigation of the mental health and cognitive correlates of psychological decentering in adolescence.R. C. Knight,D. L. Dunning,J. Cotton,G. Franckel,S. P. Ahmed,S. J. Blakemore,T.Ford,W. Kuyken,Myriad Team,T. Dalgleish &M. P. Bennett -2025 -Cognition and Emotion 39 (2):465-475.detailsThe ability to notice and reflect on distressing internal experiences from an objective perspective, often called psychological decentering, has been posited to be protective against mental health difficulties. However, little is known about how this skill relates to age across adolescence, its relationship with mental health, and how it may impact key domains such as affective executive control and social cognition. This study analysed a pre-existing dataset including mental health measures and cognitive tasks, administered to adolescents in Greater London and (...) Cambridge (mean age (SD) = 14.4 (1.77) years, N = 553). A self-report index of decentering based on available questionnaire items in the dataset was developed. Multiple linear regression was used to examine associations between decentering and mental health, affective executive control (measured using an affective Stroop Task, affective Working Memory Task, and affective Sustained Attention to Response Task) and social cognition. Higher decentering was significantly associated with lower depression and anxiety scores and higher psychological wellbeing. Results did not indicate significant relationships between decentering, affective executive control and social cognition. Further research is needed to discover cognitive mechanisms associated with this process, which could allow for optimisation of existing psychological therapy and reveal new avenues of intervention. (shrink)
When Obligations Conflict: Necessary Violations of Trauma Informed Care in Ethics Consultation?Paul J.Ford,Georgina Morley &Lauren R. Sankary -2022 -American Journal of Bioethics 22 (5):60-62.detailsComplex clinical ethics cases require a blend of compassion, sensitivity, and tenacity in order to navigate the hard work required of stakeholders. Each person comes to the table with rich historie...
Different questions, different goals.Paul J.Ford &Adrienne R. Boissy -2007 -American Journal of Bioethics 7 (2):46 – 47.detailsFox and her colleagues (2007) present an important and foundational study concerning the character of current ethics consultation services (ECSs). Although we have some concerns regarding the gener...
Exit from Brain Device Research: A Modified Grounded Theory Study of Researcher Obligations and Participant Experiences.Lauren R. Sankary,Megan Zelinsky,Andre Machado,Taylor Rush,Alexandra White &Paul J.Ford -2022 -American Journal of Bioethics Neuroscience 13 (4):215-226.detailsAs clinical trials end, little is understood about how participants exiting from clinical trials approach decisions related to the removal or post-trial use of investigational brain implants, such as deep brain stimulation (DBS) devices. This empirical bioethics study examines how research participants experience the process of exit from research at the end of clinical trials of implanted neural devices. Using a modified grounded theory study design, we conducted semi-structured, in-depth interviews with 16 former research participants from clinical trials of DBS (...) and responsive neurostimulation (RNS). Open-ended questions elicited motivations for joining the trial, understanding of study procedures at the time of initial informed consent, the process of exiting from research, and decisions about device removal or post-trial device use. Thematic analysis identified categories related to: limited preparedness for the end of research participation, straightforwardness of decisions to explant or keep the device, reconciling with the end of research participation, reconciling post-trial expectations, and achieving a sense of closure after exit from research. A preliminary theoretical model describes contextual factors influencing the process and experience of exit from research. Experiences of clinical trial participants should guide research practices to enhance the ethical design and conduct of clinical trials in DBS and other brain devices. (shrink)
Trusting the Ethics Consultant: Adopting a Trauma-Informed Approach to Ethics Consultation.P. J.Ford,G. Morley &L. R. Sankary -2023 -American Journal of Bioethics 23 (1):101-103.detailsLayers of complexity arise when a person arrives in an Intensive Care Unit (ICU) due to self-harm intended to end their life and when there is known past personal trauma. We highlight three importa...
Recovering Reason: Essays in Honor of Thomas L. Pangle.Peter J. Ahrensdorf,Arlene Saxonhouse,Steven Forde,Paul A. Rahe,Michael Zuckert,Devin Stauffer,David Leibowitz,Robert Goldberg,Christopher Bruell,Linda R. Rabieh,Richard S. Ruderman,Christopher Baldwin,J. Judd Owen,Waller R. Newell,Nathan Tarcov,Ross J. Corbett,Clifford Orwin,John W. Danford,Heinrich Meier,Fred Baumann,Robert C. Bartlett,Ralph Lerner,Bryan-Paul Frost,Laurie Fendrich,Donald Kagan,H. Donald Forbes &Norman Doidge (eds.) -2010 - Lexington Books.detailsRecovering Reason: Essays in Honor of Thomas L. Pangle is a collection of essays composed by students and friends of Thomas L. Pangle to honor his seminal work and outstanding guidance in the study of political philosophy. These essays examine both Socrates' and modern political philosophers' attempts to answer the question of the right life for human beings, as those attempts are introduced and elaborated in the work of thinkers from Homer and Thucydides to Nietzsche and Charles Taylor.
"Two per cent isn't a lot, but when it comes to death it seems quite a lot anyway": patients' perception of risk and willingness to accept risks associated with thrombolytic drug treatment for acute stroke.M. Mangset,E. Berge,R. Forde,J. Nessa &T. B. Wyller -2009 -Journal of Medical Ethics 35 (1):42-46.detailsBackground: Thrombolytic drugs to treat an acute ischaemic stroke reduce the risk of death or major disability. The treatment is, however, also associated with an increased risk of potentially fatal intracranial bleeding. This confronts the patient with the dilemma of whether or not to take a risk of a serious side effect in order to increase the likelihood of a favourable outcome. Objective: To explore acute stroke patients’ perception of risk and willingness to accept risks associated with thrombolytic drug treatment. (...) Design: Eleven patients who had been informed about thrombolytic drug treatment and had been through the process of deciding whether or not to participate in a thrombolytic drug trial went through repeated qualitative, semistructured interviews. Results: Many patients showed a limited perception of the risks connected with thrombolytic drug treatment. Some perceived the risk as not relevant to them and were reluctant to accept that treatment could cause harm. Others seemed to be aware that treatment would mean exposure to risk. The patients’ willingness to take a risk also varied substantially. Several statements revealed ambiguity and confusion about being involved in a decision about treatment. The patients’ reasoning about risk was put into the context of their health-related experiences and life histories. Several patients wanted the doctor to be responsible for the decisions. Conclusion: Acute stroke patients’ difficulties in perceiving and processing information about risk may reduce their ability to be involved in clinical decisions where risks are involved. (shrink)
Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk).S. Sharkey,R. Jones,J. Smithson,E. Hewis,T. Emmens,T.Ford &C. Owens -2011 -Journal of Medical Ethics 37 (12):752-758.detailsThe internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of (...) potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a ‘report’ button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them. (shrink)
Changes in Patients’ Desired Control of Their Deep Brain Stimulation and Subjective Global Control Over the Course of Deep Brain Stimulation.Amanda R. Merner,Thomas Frazier,Paul J.Ford,Scott E. Cooper,Andre Machado,Brittany Lapin,Jerrold Vitek &Cynthia S. Kubu -2021 -Frontiers in Human Neuroscience 15.detailsObjective: To examine changes in patients’ desired control of the deep brain stimulator and perception of global life control throughout DBS.Methods: A consecutive cohort of 52 patients with Parkinson’s disease was recruited to participate in a prospective longitudinal study over three assessment points. Semi-structured interviews assessing participants’ desire for stimulation control and perception of global control were conducted at all three points. Qualitative data were coded using content analysis. Visual analog scales were embedded in the interviews to quantify participants’ perceptions (...) of control over time.Results: Participants reported significant increases in their perception of global control over time and significant declines in their desired control of the stimulation. These changes were unrelated to improvements in motor symptoms. Improvements in global control were negatively correlated with a decline in desired stimulation control. Qualitative data indicate that participants have changed, nuanced levels of desired control over their stimulators. Increased global life control following DBS may be attributed to increased control over PD symptoms, increased ability to engage in valued activities, and increased overall self-regulation, while other domains related to global control remained unaffected by DBS.Conclusions: There are few empirical data documenting patients’ desire for stimulation control throughout neuromodulation and how stimulation control is related to other aspects of control despite the growing application of neuromodulation devices to treat a variety of disorders. Our data highlight distinctions in different types of control and have implications for the development of patient-controlled neurostimulation devices. (shrink)
Educational commons in theory and practice: global pedagogy and politics.Alexander J. Means,Derek R.Ford &Graham B. Slater (eds.) -2017 - New York, NY: Palgrave-Macmillan.detailsIn this volume, critical scholars and educational activists explore the intricate dynamics between the enclosure of global commons and radical visions of a common social future that breaks through the logics of privatization, ecological degradation, and dehumanizing social hierarchies in education. In its institutional and informal configurations alike, education has been identified as perhaps the key stake in this struggle. Insisting on the urgency of an education that breaks free of the bonds of enclosure, the essays included in this volume (...) weave together bright threads of radical thought into a vivid tapestry illustrating a critical framework for enacting a global educational commons. (shrink)
Overcoming barriers to informed consent in neurological research: Perspectives from a national survey.Lauren R. Sankary,Megan E. Zelinsky,Paul J.Ford,Eric C. Blackstone &Robert J. Fox -2023 -Research Ethics 19 (1):42-61.detailsThe ethical recruitment of participants with neurological disorders in clinical research requires obtaining initial and ongoing informed consent. The purpose of this study is to characterize barriers faced by research personnel in obtaining informed consent from research participants with neurological disorders and to identify strategies applied by researchers to overcome those barriers. This study was designed as a web-based survey of US researchers with an optional follow-up interview. A subset of participants who completed the survey were selected using a stratified (...) purposeful sampling strategy and invited to participate in an in-depth qualitative interview by phone or video conference. Data were analyzed using a mixed methods approach, including content analysis of survey responses and thematic analysis of interview responses. Over 1 year, 113 survey responses were received from US research personnel directly involved in obtaining informed consent from participants in neurological research. Frequently identified barriers to informed consent included: cognitive and communication impairments (e.g. aphasia), unrealistic expectations of research participants, mistrust of medical research, time constraints, literacy barriers, lack of available social support, and practical or resource-related constraints. Strategies to enhance informed consent included: involving close others to support participant understanding of study-related information, collaborating with more experienced research personnel to facilitate training in obtaining informed consent, encouraging participants to review consent forms in advance of consent discussions, and using printed materials and visual references. Beyond conveying study-related information, researchers included in this study endorsed ethical responsibilities to support deliberation necessary to informed consent in the context of misconceptions about research, unrealistic expectations, limited understanding, mistrust, and/or pressure from close others. Findings highlight the importance of training researchers involved in obtaining informed consent in neurological research to address disease-specific challenges and to support the decision-making processes of potential research participants and their close others. (shrink)
In Search of Humanity: Essays in Honor of Clifford Orwin.Ryan Balot,Timothy W. Burns,Paul A. Cantor,Brent Edwin Cusher,Donald Forbes,Steven Forde,Bryan-Paul Frost,Kenneth Hart Green,Ran Halévi,L. Joseph Hebert,Henry Higuera,Robert Howse,S. N. Jaffe,Michael S. Kochin,Noah Lawrence,Mark J. Lutz,Arthur M. Melzer,Jeffrey Metzger,Miguel Morgado,Waller R. Newell,Michael Palmer,Lorraine Smith Pangle,Thomas L. Pangle,Marc F. Plattner,William B. Parsons,Linda R. Rabieh,Andrea Radasanu,Michael Rosano,Diana J. Schaub,Susan Meld Shell &Nathan Tarcov (eds.) -2015 - Lexington Books.detailsThis collection of essays, offered in honor of the distinguished career of prominent political philosophy professor Clifford Orwin, brings together internationally renowned scholars to provide a wide context and discuss various aspects of the virtue of “humanity” through the history of political philosophy.
Tables Dancing: Playing with Enchantments of Materiality beyond Representation.Gabrielle Ivinson &Mark Sackville-Ford -2019 -Paragrana: Internationale Zeitschrift für Historische Anthropologie 28 (2):83-94.detailsThis article is written in response to Method Lab #2, reacting to and reading scenes from the theatre and the school classroom. We responded to ‘The table and the dancer’ by Carla J. Maier with drawings by Janna R. Wieland, and ‘The book and the authors reading’ by Elise v. Bernstorff and Carla J. Maier. Our responses are within the ontological turn and specifically posthuman studies and new material feminism(s). We move beyond representational thinking to explore vibrant matter and experiment (...) with what more the text, scenes and pictures can become. (shrink)
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Inner models with many Woodin cardinals.J. R. Steel -1993 -Annals of Pure and Applied Logic 65 (2):185-209.detailsWe extend the theory of “Fine structure and iteration trees” to models having more than one Woodin cardinal.