HEC Forum (2014) 26:181–183 DOI 10.1007/s10730-014-9249-1
Introduction: The Limits of Consent and Conscience in Medicine James Stacey Taylor
Published online: 22 August 2014 Ó Springer Science+Business Media Dordrecht 2014
In recent years a concern with the value of personal autonomy has come to dominate discussions in medical ethics. This emphasis on autonomy has naturally led to discussions of what criteria must be met for a person to be autonomous, or to be autonomous with respect to her decisions, her actions, or those of her desires that motivate her to make or to perform the decisions or the actions that she makes or does. It has also led to discussions of whether autonomy is valuable in itself, instrumentally valuable, or whether its value is a combination of the two: that a person’s autonomy is valuable to her not merely as a means to securing something else that she finds valuable, but is valuable as its possession is part of what makes her life go well. Questions that concern the value of autonomy are necessarily linked to the prior question of the precise nature of autonomy. There are two main approaches to answering this question within the Western philosophical tradition. The first is Kantian, the proponents of which hold (loosely) that a person is autonomous to the extent that her will conforms to the moral law. This approach to autonomy is thoroughly impersonal. By contrast, proponents of accounts of personal autonomy hold that a person is autonomous to the degree that her decisions (desires, actions) flow from her individual self in some specifiable way. On this latter account of autonomy, a person is autonomous with respect to (for example) a first order desire that moves her to act if it meets certain specified conditions for it to be considered hers, such that she could be expected to be answerable for it (rather than merely being hers as an animal’s desire could be its), or else being an alien force within her. In the first paper in this Special Issue, ‘‘The Limits of Traditional Approaches to Informed Consent for J. S. Taylor (&) Department of Philosophy, Religion, and Classical Studies, P.O. Box 7718, 2000 Pennington Rd., Ewing, NJ 08628, USA e-mail: [email protected]
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Genomic Medicine’’, Thomas May et al. argue that the Kantian account of autonomy has inhibited the development of satisfactory accounts of informed consent. In particular, they argue that a Kantian approach to informed consent fails to recognize how the effects of one’s decisions, including one’s healthcare decisions, could affect others, including the community in which one is situated. As such, they argue, traditional approaches to informed consent should be supplemented by a concern for the community as a whole. This, May et al. argue, will be especially important in the context of genomic medicine, since information secured from genomic technologies can have significant other-regarding implications. While May et al. criticize the Kantian approach to informed consent they do not reject the view that securing persons’ informed consent to their treatment is morally required. A similarly implicit endorsement of the moral importance of informed consent can be seen in the second paper in this Special Issue, ‘‘The Role of Research Ethics Committees in Making Decisions About Risk’’, by Allison Ross and Nafsika Athanassoulis. Ross and Athanassoulis accept that the role of research ethics committees (RECs) is to ensure that participants in both medical and some nonmedical research give their informed consent to their participation. This view is, as Ross and Athanassoulis note, an uncontroversial one. More controversial is the claim that RECs should attempt to calculate the risks and benefits of the proposed research. Some persons argue that this role should be adopted by the RECs on the grounds that they can then provide information about the expected risks and benefits of the proposed research to the prospective participants, and hence aid them in making informed choices about whether or not to participate. By contrast, persons with a more paternalistic orientation hold that RECs should limit the extent to which prospective participants can be exposed to harm, arguing that they are unlikely to be able adequately to judge for themselves where their best interests lie given the complexities of contemporary research. Departing from this autonomy-focused set of arguments Ross and Athanassoulis argue that RECs should instead aim at fostering a research context in which virtuous decisions can be made by all involved. One might question this approach, asking whether a decision can be virtuous if it is not also autonomous. If not, then it appears that rather than moving away from autonomy Ross and Athanassoulis have, like May et al., offered a further condition that should be met for a person’s decisions in a medical context to be moral. In contrast to the arguments from May et al., and Ross and Athanassoulis, those of Amy E. White in ‘‘Bodily Integrity Identity Disorder Beyond Amputation: Consent and Liberty’’ focus on the more traditional questions of whether a patient’s consent to her treatment in a particular medical situation is uncoerced, competent, and informed. Yet, while White’s focus might be orthodox, the medical question that she addresses is not: can persons suffering from bodily integrity identity disorder (BIID) give their informed consent to having healthy parts of their body amputated so that their bodies will conform to their idealized images of themselves? White argues that since persons suffering from gender dysmorphia can give their informed consent to surgical intervention, and this is similar in relevant respects to BIID, sufferers from the latter condition could similarly give their informed consent to surgical intervention.
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While May et al. focused on a Kantian account of autonomy, White drew on an account of (non-Kantian) personal autonomy, and Ross and Athanassoulis left this concept undefined, Griffin Trotter, in his elegant and evocative paper ‘‘Autonomy as Self-Sovereignty’’ provides an account of autonomy on which one is autonomous if one lives in accord with one’s own genius, or inner nature. Drawing on the work of Emerson and Thoreau, Trotter’s paper is a welcome reminder that the institutional structures in which persons find themselves—indeed, the very conception of ‘‘health’’ that persons are implicitly expected to accept in healthcare settings— might serve to compromise individual autonomy. Part of Trotter’s concern is to bring into bas relief that fact that persons have different views of what constitutes ‘‘health’’, and what constitutes appropriate healthcare. Recognition of Trotter’s observation here implicitly undergirds the last two papers in this Special Issue, Mark P. Aulisio’s and Kavita Shah Arora’s ‘‘Speak No Evil? Conscience and the Duty to Inform, Refer or Transfer Care,’’ and Mark R. Wicclair’s ‘‘Managing Conscientious Objection in Health Care Institutions’’. Both of these papers address questions that arise in healthcare settings when healthcare professionals desire not to provide certain medications or procedures to their patient population as they have moral objections to their use. Aulisio and Arora distinguish between ‘‘traditional’’ claims of conscience that involved persons objecting to direct participation in abortions or ‘‘passive euthanasia,’’ and ‘‘contemporary’’ claims of conscience that are often focused on the provision of contraception. Aulisio and Arora argue that these two types of claims of conscience are different in kind, and that while the former, traditional, claims of conscience should receive protection, the latter should not. While Aulisio and Arora offer a theoretical basis for distinguishing between different types of claims of conscience, Wicclair focuses on developing institutional policies that are designed to promote a morally acceptable institutional response to conscientious refusals in healthcare. Wicclair argues that the main purpose of reviewing persons’ reasons for their conscientious objections is to encourage them to reflect on the nature of their objections and their importance to them. In this way, Wicclair’s approach can be seen as being akin to Ross’ and Athanassoulis’ emphasis on fostering a context in which virtuous decisions can be made. It was noted at the start of this Introduction to this Special Issue that a concern with the nature and value of autonomy has come to dominate discussions in contemporary medical ethics. Yet, while this is true, as the papers in this Special Issue demonstrate this does not mean that the mere fact that a person’s request to a healthcare provider is one that she is autonomous with respect to shows that it should be acceded to. There might be, as both May et al. and Ross and Athanassoulis show, other factors besides the autonomy of the requester than have moral import, while the papers by Aulisio and Arora, and Wicclair, show clearly that it is not only the autonomy of the requestor that carries moral weight. Such plurality of concern for autonomy is mirrored in an even greater plurality of views in healthcare, as Trotter reminds us, while as White shows even a narrow focus on the decisions of patients does not allow us to abdicate the need for moral arguments in favor of the legitimacy of their requests. Taken together, then, the papers in this Special Issue of HEC Forum will aid in exploring ‘‘The Limits of Consent and Conscience in Medicine’’.
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Introduction: The Limits of Consent and Conscience in Medicine James Stacey Taylor
Published online: 22 August 2014 Ó Springer Science+Business Media Dordrecht 2014
In recent years a concern with the value of personal autonomy has come to dominate discussions in medical ethics. This emphasis on autonomy has naturally led to discussions of what criteria must be met for a person to be autonomous, or to be autonomous with respect to her decisions, her actions, or those of her desires that motivate her to make or to perform the decisions or the actions that she makes or does. It has also led to discussions of whether autonomy is valuable in itself, instrumentally valuable, or whether its value is a combination of the two: that a person’s autonomy is valuable to her not merely as a means to securing something else that she finds valuable, but is valuable as its possession is part of what makes her life go well. Questions that concern the value of autonomy are necessarily linked to the prior question of the precise nature of autonomy. There are two main approaches to answering this question within the Western philosophical tradition. The first is Kantian, the proponents of which hold (loosely) that a person is autonomous to the extent that her will conforms to the moral law. This approach to autonomy is thoroughly impersonal. By contrast, proponents of accounts of personal autonomy hold that a person is autonomous to the degree that her decisions (desires, actions) flow from her individual self in some specifiable way. On this latter account of autonomy, a person is autonomous with respect to (for example) a first order desire that moves her to act if it meets certain specified conditions for it to be considered hers, such that she could be expected to be answerable for it (rather than merely being hers as an animal’s desire could be its), or else being an alien force within her. In the first paper in this Special Issue, ‘‘The Limits of Traditional Approaches to Informed Consent for J. S. Taylor (&) Department of Philosophy, Religion, and Classical Studies, P.O. Box 7718, 2000 Pennington Rd., Ewing, NJ 08628, USA e-mail: [email protected]
123
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HEC Forum (2014) 26:181–183
Genomic Medicine’’, Thomas May et al. argue that the Kantian account of autonomy has inhibited the development of satisfactory accounts of informed consent. In particular, they argue that a Kantian approach to informed consent fails to recognize how the effects of one’s decisions, including one’s healthcare decisions, could affect others, including the community in which one is situated. As such, they argue, traditional approaches to informed consent should be supplemented by a concern for the community as a whole. This, May et al. argue, will be especially important in the context of genomic medicine, since information secured from genomic technologies can have significant other-regarding implications. While May et al. criticize the Kantian approach to informed consent they do not reject the view that securing persons’ informed consent to their treatment is morally required. A similarly implicit endorsement of the moral importance of informed consent can be seen in the second paper in this Special Issue, ‘‘The Role of Research Ethics Committees in Making Decisions About Risk’’, by Allison Ross and Nafsika Athanassoulis. Ross and Athanassoulis accept that the role of research ethics committees (RECs) is to ensure that participants in both medical and some nonmedical research give their informed consent to their participation. This view is, as Ross and Athanassoulis note, an uncontroversial one. More controversial is the claim that RECs should attempt to calculate the risks and benefits of the proposed research. Some persons argue that this role should be adopted by the RECs on the grounds that they can then provide information about the expected risks and benefits of the proposed research to the prospective participants, and hence aid them in making informed choices about whether or not to participate. By contrast, persons with a more paternalistic orientation hold that RECs should limit the extent to which prospective participants can be exposed to harm, arguing that they are unlikely to be able adequately to judge for themselves where their best interests lie given the complexities of contemporary research. Departing from this autonomy-focused set of arguments Ross and Athanassoulis argue that RECs should instead aim at fostering a research context in which virtuous decisions can be made by all involved. One might question this approach, asking whether a decision can be virtuous if it is not also autonomous. If not, then it appears that rather than moving away from autonomy Ross and Athanassoulis have, like May et al., offered a further condition that should be met for a person’s decisions in a medical context to be moral. In contrast to the arguments from May et al., and Ross and Athanassoulis, those of Amy E. White in ‘‘Bodily Integrity Identity Disorder Beyond Amputation: Consent and Liberty’’ focus on the more traditional questions of whether a patient’s consent to her treatment in a particular medical situation is uncoerced, competent, and informed. Yet, while White’s focus might be orthodox, the medical question that she addresses is not: can persons suffering from bodily integrity identity disorder (BIID) give their informed consent to having healthy parts of their body amputated so that their bodies will conform to their idealized images of themselves? White argues that since persons suffering from gender dysmorphia can give their informed consent to surgical intervention, and this is similar in relevant respects to BIID, sufferers from the latter condition could similarly give their informed consent to surgical intervention.
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HEC Forum (2014) 26:181–183
183
While May et al. focused on a Kantian account of autonomy, White drew on an account of (non-Kantian) personal autonomy, and Ross and Athanassoulis left this concept undefined, Griffin Trotter, in his elegant and evocative paper ‘‘Autonomy as Self-Sovereignty’’ provides an account of autonomy on which one is autonomous if one lives in accord with one’s own genius, or inner nature. Drawing on the work of Emerson and Thoreau, Trotter’s paper is a welcome reminder that the institutional structures in which persons find themselves—indeed, the very conception of ‘‘health’’ that persons are implicitly expected to accept in healthcare settings— might serve to compromise individual autonomy. Part of Trotter’s concern is to bring into bas relief that fact that persons have different views of what constitutes ‘‘health’’, and what constitutes appropriate healthcare. Recognition of Trotter’s observation here implicitly undergirds the last two papers in this Special Issue, Mark P. Aulisio’s and Kavita Shah Arora’s ‘‘Speak No Evil? Conscience and the Duty to Inform, Refer or Transfer Care,’’ and Mark R. Wicclair’s ‘‘Managing Conscientious Objection in Health Care Institutions’’. Both of these papers address questions that arise in healthcare settings when healthcare professionals desire not to provide certain medications or procedures to their patient population as they have moral objections to their use. Aulisio and Arora distinguish between ‘‘traditional’’ claims of conscience that involved persons objecting to direct participation in abortions or ‘‘passive euthanasia,’’ and ‘‘contemporary’’ claims of conscience that are often focused on the provision of contraception. Aulisio and Arora argue that these two types of claims of conscience are different in kind, and that while the former, traditional, claims of conscience should receive protection, the latter should not. While Aulisio and Arora offer a theoretical basis for distinguishing between different types of claims of conscience, Wicclair focuses on developing institutional policies that are designed to promote a morally acceptable institutional response to conscientious refusals in healthcare. Wicclair argues that the main purpose of reviewing persons’ reasons for their conscientious objections is to encourage them to reflect on the nature of their objections and their importance to them. In this way, Wicclair’s approach can be seen as being akin to Ross’ and Athanassoulis’ emphasis on fostering a context in which virtuous decisions can be made. It was noted at the start of this Introduction to this Special Issue that a concern with the nature and value of autonomy has come to dominate discussions in contemporary medical ethics. Yet, while this is true, as the papers in this Special Issue demonstrate this does not mean that the mere fact that a person’s request to a healthcare provider is one that she is autonomous with respect to shows that it should be acceded to. There might be, as both May et al. and Ross and Athanassoulis show, other factors besides the autonomy of the requester than have moral import, while the papers by Aulisio and Arora, and Wicclair, show clearly that it is not only the autonomy of the requestor that carries moral weight. Such plurality of concern for autonomy is mirrored in an even greater plurality of views in healthcare, as Trotter reminds us, while as White shows even a narrow focus on the decisions of patients does not allow us to abdicate the need for moral arguments in favor of the legitimacy of their requests. Taken together, then, the papers in this Special Issue of HEC Forum will aid in exploring ‘‘The Limits of Consent and Conscience in Medicine’’.
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