Informed consent for pharmacogenomic testing in people with a learning disability Background Advances in genomic healthcare will enable medication to be tailored to each individual’s needs, based on subtle genetic variations. This will result in individuals being asked to consent to genetic testing for this purpose. The recent political agenda for social change has emphasised the right of people with learning disabilities to have more autonomy and make their own decisions. There have also been significant changes in the way healthcare practitioners relate to their patients, with a shift away from paternalism towards shared decision-making. Research Aim The aims of the study were (1) to explore the information needs of people with mild to moderate learning disabilities with respect to pharmacogenomic tests and (2) to identify ways of facilitating informed consent. Methods An integrative literature review was conducted to identify research on informed consent to healthcare interventions in people with learning disabilities (Phase 1). Subsequent phases (Phases 2-4) of the study were conducted using an ethnographic approach. Phase 2 involved observation of six participants with learning disabilities undergoing a routine blood test consultation in general practice. This was followed by Phase 3, in which semi-structured interviews with 14 participants with learning disabilities were conducted. In Phase 4, three different methods were used: focus groups with carers (four paid carers, five family carers), an on-line bulletin board for healthcare professionals (five participants) and interviews with six key informants from the field of learning disability. Findings The data showed consent procedures were often inadequate and there was inconsistent knowledge of mental capacity law amongst health professionals. Provision of information to patients prior to a blood test was variable, but interviews with people with learning disabilities revealed the fact that this information may not be wanted by them. People with learning disabilities viewed pharmacogenomic tests as similar to other blood tests and would want access to them. The attitudes of paid carers and family carers differed in terms of decision-making opportunities for people with learning disabilities. Conclusions Healthcare practitioners, carers and people with learning disability need to be familiar with the principles of the Mental Capacity Act to facilitate valid consent in the healthcare context. Healthcare practitioners also need to be made aware of developments in pharmacogenomics if it is to become part of routine health care. Finally, this study demonstrated the value of qualitative research in exploring the knowledge and attitudes of people with learning disability.

No / The Mental Capacity Act 2005 introduced legal safeguards (which came into force in April 2009) aimed at protecting the liberty of people lacking capacity admitted to institutions in England and Wales. This paper discusses the adequacy of the Deprivation of Liberty Safeguards for protecting the liberty of residents in social care settings and the role of regulation in monitoring their implementation. In particular, the potential impact of planned unitary regulation on the regulator's ability to protect residents’ liberty is critiqued, centring on people with dementia living in care homes. It is suggested that the capacity of the safeguards to adequately protect the liberty of residents with dementia may be limited by under-recognition of the extent to which deprivation of liberty can actually occur in care homes, insufficient resourcing and a lack of critical independence in their proposed implementation. In addition, the planned contraction of regulation – especially a reduction in inspections – will constrain the regulator's ability to ensure that residents’ right to liberty is protected. The author concludes that the new model of regulation adopted by the UK government has prioritised economic efficiency over safeguarding the right to liberty of vulnerable residents in institutions.

Old age – and particularly the increasing numbers of older people globally and within the United Kingdom - is becoming a social and political phenomenon. Yet despite this, very little has been written on how the law – and especially mental disability law – intersects with old age. This is notwithstanding the fact that many older people may encounter conditions that impact their mental or cognitive abilities, and proportionally, may therefore be greatly affected by this area of law. By drawing on a number of theories – sometimes termed ‘relational’ theories – which are derived predominantly from feminist theory, this thesis seeks to explore the adequacy of mental disability law for safeguarding health and welfare-related decision-making of older adults in three areas; where an older person has been subjected to ageism, where they have been the victim of interpersonal abuse, and where they have dementia and may lack mental capacity. Within this broader goal, this thesis has two specific aims. First, to explicitly critique and challenge the adequacy of the law as it is applied in these circumstances. It is suggested in particular that a deeper analysis of the law in both its previous and current forms betrays the liberal and unduly individualistic roots of the legislative framework. These are roots that are predicated on non-interference, and an idealistic paradigm of the rational, autonomous, and healthy bodied individual. This – it is contended throughout – is an unsuitable philosophy to underpin the law, particularly where the law engages with older adults. Second, this thesis aims to navigate a more suitable pathway within the law as it currently exists. While operating as a tool to critique the legislative framework and its underpinning philosophy, it is argued that the theories drawn upon throughout the thesis also have the potential to highlight how the law could be implemented in such a way so as to emphasise the importance of the realities of the lived experiences of old age, and particularly the experience of ageism, abuse, and dementia. Crucially, it is also suggested that such theories can help the law pay greater attention to the complex web of relationships – both positive and negative; personal and societal – that an older person may find themselves embedded within, and that frequently take on an added significance in old age.

The Mental Capacity Act 2005, and the domestic law surrounding it, is currently in a state of instability, having undergone rigorous scrutiny by the House of Lords Select Committee. At an international level, the United Nations Convention on the Rights of Persons with Disabilities 2006 has cast substantial doubt over the very basis of this legal framework. The recommendations made by the Select Committee, and any resulting action by the government to address these, will be hoped to have an impact on the implementation of the legislation on those falling within its remit. On a deeper level, however, this thesis seeks to critically engage with the theoretical underpinnings which inform and guide this legislative framework. This entails a questioning of the ways in which those with disabilities and their carers are responded to under the statute. Exploring the theoretical debates in this context leads to a conclusion that the Act promulgates an individualistic approach to the concept of mental capacity, and does not adequately reflect the reality and lived experiences of those deemed to lack capacity or their informal carers. The papers in this thesis interrogate these issues through a focus on three distinct areas- carers interests under the best interests test; the Deprivation of Liberty Safeguards though a social model lens; and capacity to consent to sex. In doing so, this thesis suggests that more relationally and contextually focused approaches can inform a legal framework which is attentive and responsive to the interwoven interests of those with cognitive impairments and their carers, and which facilitates the enjoyment of rights through a focus on the societal, structural and institutional barriers which have historically worked to exclude these individuals.

no / This case outlines the rationale and methods used when carrying out ethnographic fieldwork in a care home environment with research participants who were living with a dementia diagnosis. Although concerns had been raised at ethics approval about the use of such methods – visual ethnography in particular – we found that there were ethical benefits for the participants whose capacity for research participation, and for social participation generally, was, in every case, higher than anticipated at the outset. By comparison we found that formal methods for assessing ability to give informed consent often appeared to create excess disability, and to exacerbate ill-being for people with dementia. The case draws on specific examples to show how issues related to methods and to ethical conduct of research are frequently intertwined, and should be considered together rather than in isolation.

No / This paper discusses the early implementation of the Mental Capacity Act 2005 in health and social care in England. The author examines the research evidence to date, particularly monitoring data from the Department of Health, in order to review the progress made in implementation. The extent to which the Act is achieving its overall aim of facilitating decision-making by people lacking capacity is discussed, focusing on people with dementia. The author concludes that the initial implementation of the Act (and the related Deprivation of Liberty Safeguards) has had only limited effectiveness in facilitating decision-making by people lacking capacity, promoting their best interests and protecting their liberty. Future implementation needs to ensure that the rights of people lacking capacity, particularly people with dementia, are taken more seriously in health and social care and are better protected.

People with learning disabilities are subject to a wide range of potential interferences with their choices and freedoms when they are 'placed' in institutional care services. The cumulative and pervasive impact of these regimes can be monumentally detrimental to self and wellbeing. Some have suggested that a new law, the Mental Capacity Act 2005, may limit the interferences that people with disabilities are subject to in care services. In this thesis, I subject the Mental Capacity Act to a critique drawn from new republican political theory. I argue that far from limiting the interferences that people with disabilities are subject to, the Act creates a mechanism which permits a proliferation of arbitrary interferences in people's everyday lives, with little recourse for people to 'invigilate' such interferences. I base this argument on a critical analysis of case law connected to the Mental Capacity Act, and by critically examining four key mechanisms of enforcement: Independent Mental Capacity Advocates, the Court of Protection, complaints procedures and regulation by the Care Quality Commission. I argue that, paradoxically, a framework for detention introduced by the Act - the deprivation of liberty safeguards - in fact contains more ingredients for ameliorating states of domination in these services than the Mental Capacity Act itself. However, the safeguards also suffer from serious defects. I conclude by discussing what lessons may be drawn from the problems with the Mental Capacity Act and the safeguards for wider reform efforts connected with the UN Convention on the Rights of Persons with Disabilities.

When should it be permissible to act against someone's expressed wishes in their best interests? In both political philosophy and legal practice, answers to this question often appeal to the concept of autonomy. Broadly, the idea is that if a person is sufficiently self-governing, then their wishes must prevail; but if they are not, then their wishes need not be respected when promoting whatever is good for them. This thesis analyses both philosophical models of autonomy and the practice of judges in England and Wales when implementing the Mental Capacity Act 2005. With regard to the philosophical models, it finds that, despite claims to the contrary, they do not offer a plausible way of assessing whether someone else is autonomous without appealing to values that are not the person's own. With regard to legal practice, it finds that, although judges speak about 'autonomy' in contradictory ways, a coherent account of when they will find that they must respect a person's expressed wishes can be constructed. This first stage of analysis makes a gulf between 'autonomy' in philosophy and law obvious. When philosophers talk about 'autonomy', they are largely concerned with the person's relationship to themselves. When judges talk about 'autonomy', they are largely concerned with the person's relationship to the world. 'Autonomy' in the philosophical sense cannot justify current practice because it does not deal with the same subject matter. Analysis of mental capacity cases does, however, allow the development of an alternative justification for actions against a person's expressed wishes. This justification lies in an evaluation of the entire situation, not of the person. It is not reducible to any model of autonomy, not even 'relational' models. Taken seriously, this justification requires a reorientation of the ethics of mental capacity law: away from overreliance on relatively few abstract 'principles' and towards articulating the difficulty and complexity of real situations. The thesis offers two papers towards the development of this latter mode.

Cognitive Limitations and Behavioral Biases In The Asset Pricing Context MAER Thesis Asbtract Giorgi Chavchanidze I incorporate behavioral and bounded rationality elements into a single asset-pricing frame- work by setting up a two-period consumption-based portfolio selection problem in which a representative agent has biased priors, does not observe the current state and thus has in- complete information about future state probabilities. He forms posterior beliefs using signals that he selects according to the rational inattention discrete choice framework of Matějka and McKay (2015), where the precision of the beliefs depend intuitively on the priors and the cost of information λ. In the case of log-utility, the optimal portfolio is a convex combination of the N portfolios the investor would have selected in each of the N states if they were fully observable, where the weights reflect the subjective posterior likelihood of time-zero states. The posterior beliefs are induced by parsimonious reweighing of priors, where the weights depend on λ, discount factor β and the relative entropies of the future state distributions induced by different time-zero states. Using a two-state example, I demonstrate how the cost of information and biases can be jointly analyzed in this framework and discuss implied...

This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy--notably the Mental Capacity Act 2005 and the 2009 National Dementia Strategy--in facilitating their human rights to liberty and self-determination, particularly a right to choose to live at home. The extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, it is suggested there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights.