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      Beyond individualism: Is there a place for relational autonomy in clinical practice and research?

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          Abstract

          The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person’s care and responsibility for connected others.

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          Most cited references75

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          Relational autonomy or undue pressure? Family's role in medical decision-making.

          Anita Ho (2008)
          The intertwining ideas of self-determination and well-being have received tremendous support in western bioethics. They have been used to reject medical paternalism and to justify patients' rights to give informed consent (or refusal) and execute advanced directives. It is frequently argued that everyone is thoroughly unique, and as patients are most knowledgeable of and invested in their own interests, they should be the ones to make voluntary decisions regarding their care. Two results of the strong focus on autonomy are the rejection of the image of patients as passive care recipients and the suspicion against paternalistic influence anyone may have on patients' decision-making process. Although the initial focus in western bioethics was on minimizing professional coercion, there has been a steady concern of family's involvement in adult patients' medical decision-making. Many worry that family members may have divergent values and priorities from those of the patients, such that their involvement could counter patients' autonomy. Those who are heavily involved in competent patients' decision-making are often met with suspicion. Patients who defer to their families are sometimes presumed to be acting out of undue pressure. This essay argues for a re-examination of the notions of autonomy and undue pressure in the contexts of patienthood and relational identity. In particular, it examines the characteristics of families and their role in adult patients' decision-making. Building on the feminist conception of the relational self and examining the context of contemporary institutional medicine, this paper argues that family involvement and consideration of family interests can be integral in promoting patients' overall agency. It argues that, in the absence of abuse and neglect, respect for autonomy and agency requires clinicians to abide by patients' expressed wishes.
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            The New Era of Informed Consent: Getting to a Reasonable-Patient Standard Through Shared Decision Making.

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              The right not to know: an autonomy based approach.

              R Andorno (2004)
              The emerging international biomedical law tends to recognise the right not to know one's genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient's autonomy, with doctors' duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient's relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be "activated" by the individual's explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons.
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                Author and article information

                Journal
                Clin Ethics
                Clin Ethics
                CET
                spcet
                Clinical Ethics
                SAGE Publications (Sage UK: London, England )
                1477-7509
                1758-101X
                13 April 2017
                September 2017
                : 12
                : 3
                : 150-165
                Affiliations
                [1 ]J. Kenyon Mason Institute for Medicine, Life Sciences and the Law, School of Law, University of Edinburgh, UK
                [2 ]Department of Sociology, Philosophy and Anthropology, College of Social Sciences and International Studies, University of Exeter, UK
                [3 ]Department of Global Health & Social Medicine, Faculty of Social Science & Public Policy, King’s College London, UK
                [4 ]Faculty of Nursing and Midwifery, King’s College London, UK
                [5 ]Clinical Ethics and Law, Faculty of Medicine, University of Southampton, UK
                Author notes
                [*]Edward S Dove, J. Kenyon Mason Institute for Medicine, Life Sciences and the Law, School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh EH8 9YL, UK. Email: edward.dove@ 123456ed.ac.uk
                Article
                10.1177_1477750917704156
                10.1177/1477750917704156
                5603969
                28989327
                4df2b7ee-fe12-40d7-8c83-654846b2284d
                © The Author(s) 2017

                This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

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                Ethics
                autonomy,care,consent,ethics,healthcare,individualism,relational autonomy
                Ethics
                autonomy, care, consent, ethics, healthcare, individualism, relational autonomy

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