This chapter analyses role, usefulness and challenges of invoking “irrelevance” as a deciding factor in an account of what discrimination is, or with what is wrong with it.

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of (...) Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

Article 12 of the UN Convention on the Rights of Persons with Disabilities guarantees persons with disabilities ‘the right to legal capacity on an equal basis with others in all aspects of life.’ In its General Comment on Article 12, the Committee on the Rights of Persons with Disabilities claims that this guarantee necessitates the abolition of the world's dominant approach to mental capacity law. According to this approach, when a person lacks the mental capacity to make a particular legal (...) decision at the material time, the state authorises a third-party to make it on her behalf. The Committee declares such substituted decision-making a violation of the Convention's guarantee of legal capacity on an equal basis, and therefore demands it be replaced by an allegedly non-discriminatory alternative called supported decision-making. This article argues that we should reject the Committee's demand in its current form, because the most influential version of the new approach to supported decision-making suffers from serious conceptual flaws that make it inferior to the mental capacity approach. However, I then argue that the Committee's demand stems from a legitimate ethical concern with respect and equality that ought to inform the CRPD's implementation process. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

The illusory appeal of double effect -- The significance of intent -- Means and ends -- Blame.

Article 12 of the UN Convention on the Rights of Persons with Disabilities guarantees persons with disabilities?the right to legal capacity on an equal basis with others in all aspects of life.? In its General Comment on Article 12, the Committee on the Rights of Persons with Disabilities claims that this guarantee necessitates the abolition of the world?s dominant approach to mental capacity law. According to this approach, when a person lacks the mental capacity to make a particular legal decision (...) at the material time, the state authorizes a third-party to make it on her behalf. The Committee declares such substituted decision-making a violation of the Convention?s guarantee of legal capacity on an equal basis, and therefore demands it be replaced by an allegedly non-discriminatory alternative called supported decision-making. This paper argues that we should reject the Committee?s demand in its current form, because the most influential version of the new approach to supported decision-making suffers from serious conceptual flaws that make it inferior to the mental capacity approach. However, I then argue that the Committee?s demand stems from a legitimate ethical concern with respect and equality that ought to inform the CRPD's implementation process. (shrink)

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the value of advance (...) directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

This book addresses these three issues: What is discrimination?; What makes it wrong?; What should be done about wrongful discrimination? It argues: that there are different concepts of discrimination; that discrimination is not always morally wrong and that when it is, it is so primarily because of its harmful effects.

Obtaining informed consent is a cornerstone of biomedical research, yet participants comprehension of presented information is often low. The most effective interventions to improve understanding rates have not been identified.

In 2014 the Essex Autonomy Project undertook a six month project, funded by the AHRC, to provide technical advice to the UK Ministry of Justice on the question of whether the Mental Capacity Act is compliant with the United Nations Convention on the Rights of Persons with Disabilities. Over the course of the project, the EAP research team organised a series of public policy roundtables, hosted by the Ministry of Justice, and which brought together leading experts to discuss and debate (...) the issues. A one-day public conference was held at the Institute for Government in July. In September 2014, the EAP research team submitted its findings to the Ministry of Justice. (shrink)

In 2014 the Essex Autonomy Project undertook a six month project, funded by the AHRC, to provide technical advice to the UK Ministry of Justice on the question of whether the Mental Capacity Act is compliant with the United Nations Convention on the Rights of Persons with Disabilities. Over the course of the project, the EAP research team organised a series of public policy roundtables, hosted by the Ministry of Justice, and which brought together leading experts to discuss and debate (...) the issues. A one-day public conference was held at the Institute for Government in July. In September 2014, the EAP research team submitted its findings to the Ministry of Justice. (shrink)

The Convention on the Rights of Persons with Disabilities is increasingly seen as driving a paradigm shift in mental health law, particularly in relation to the understanding that it requires a shift from substituted to supported decisions. This article identifies two competing moral commitments implied by this shift, both of which appeal to the notion of autonomy. It is argued that because of these commitments the Convention is in tension with more general calls in the medical ethics literature for preserving (...) patient autonomy through support. The competing commitments within the Convention also present a particular challenge in putting the support it requires into practice. A discursive control account of freedom is used to develop some practical guidelines for navigating this new moral territory. (shrink)