People have a powerful interest in genetic privacy and its associated claim to ignorance, and some equally powerful desires to be shielded from disturbing information are often voiced. We argue, however, that there is no such thing as a right to remain in ignorance, where a fight is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances.
The White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century, is shaped by the principles of Legal and Civil Rights, Independence, Choice and Inclusion. These principles are laudable, but this paper argues that in matters of health that are not within the experiences of adults with learning disabilities, a duty of care should override the elusive mantra of ‘choice’.
This article explores the intersection of English adult protection law and policy as it impacted on the lives of people with mental disabilities. It evaluates developments that were premised on the notion of the 'vulnerable adult', in light of recent theoretical interrogation of vulnerability and the normative shifts in law and policy advocated by the UNCRPD. I argue that the policy and legal conceptions of vulnerability developed in England and Wales, if reworked, have the potential to transform our understanding of what it is to be vulnerable into a more radical and socially-grounded framework for adult safeguarding. This article concludes with some reflections on what further conceptual and policy work must be done in order to effect that transformation.
Purpose -Serious case reviews (SCRs) are one means of learning the lessons arising from adverse, salient incidents and tragedies. Adult Safeguarding Boards in England are expected to have an SCR policy and procedure, to commission SCRs, to abstract and act on the learning, and to monitor the resulting action plans. Design/methodology/approach -Since SCRs reflect a wide range of processes, the authors undertook a general review, drawing on their experiences of conducting and contributing to SCRs. They chose to pose sets of question-prompts regarding the commissioning process, the management of the process, the appointment of a chair and author, the terms of reference, information-sharing, confidentiality, involving relatives and making findings public. The compliance of the process with human rights legislation is also considered.Findings -Whilst the authors acknowledge the responsibility of organisations to promote continuous and cumulative professional learning, they do not promote SCRs as the sole means of learning about the ways in which professionals and agencies work together to safeguard adults at risk of abuse.Originality/value -The paper challenges the perception that SCR can be streamlined, structured, codified, and constrained.
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