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Beyond Consent in Research
Cambridge Quarterly of Healthcare Ethics 23 (3):361-368 (2014)
Abstract
Abstract:Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices.My notes
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Citations of this work
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.
Patients’ Beliefs About Deep Brain Stimulation for Treatment-Resistant Depression.Ryan E. Lawrence, Catharine R. Kaufmann, Ravi B. DeSilva & Paul S. Appelbaum - 2018 - American Journal of Bioethics Neuroscience 9 (4):210-218.
Informed Consent in Implantable BCI Research: Identifying Risks and Exploring Meaning.Eran Klein - 2016 - Science and Engineering Ethics 22 (5):1299-1317.
Stakeholders’ Ethical Concerns Regarding Psychiatric Electroceutical Interventions: Results from a US Nationwide Survey.R. Bluhm, E. D. Sipahi, E. D. Achtyes, A. M. McCright & L. Y. Cabrera - 2024 - AJOB Empirical Bioethics 15 (1):11-21.
Instrumentalist analyses of the functions of ethics concept-principles: a proposal for synergetic empirical and conceptual enrichment.Eric Racine, M. Ariel Cascio, Marjorie Montreuil & Aline Bogossian - 2019 - Theoretical Medicine and Bioethics 40 (4):253-278.
References found in this work
Consent to Deep Brain Stimulation for Neurological and Psychiatric Disorders.Walter Glannon - 2010 - Journal of Clinical Ethics 21 (2):104-111.
Vulnerable populations in research: The case of the seriously ill.Philip J. Nickel - 2006 - Theoretical Medicine and Bioethics 27 (3):245-264.
Hope and Patients’ Expectations in Deep Brain Stimulation: Healthcare Providers’ Perspectives and Approaches.Emily Bell, Bruce Maxwell, Mary Pat McAndrews, Abbas Sadikot & Eric Racine - 2010 - Journal of Clinical Ethics 21 (2):112-124.
Vulnerable Brains: Research Ethics and Neurosurgical Patients.Paul J. Ford - 2009 - Journal of Law, Medicine and Ethics 37 (1):73-82.
Informed consent for clinical trials of deep brain stimulation in psychiatric disease: challenges and implications for trial design: Table 1.Nir Lipsman, Peter Giacobbe, Mark Bernstein & Andres M. Lozano - 2012 - Journal of Medical Ethics 38 (2):107-111.
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