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Human enhancement continues to be hotly debated by both ‘professionals’ andacademics, and increasingly also by the general public. This is no surprise, given thatthe idea of making human beings better – individually and collectively – has existedfor centuries. Parents appear to be especially receptive to new ways of improving thequalities of their offspring – first and foremost their cognitive abilities – in the hopeof giving them the best life possible. At the same time, children as not-yetautonomous persons are vulnerable to the decisions made on their behalf. Thisdynamic has led to a long-running philosophical debate about the moralpermissibility of paediatric enhancement. Unfortunately, this debate has somewhatstalled at the point of disagreement on general permissibility, with both sidesstrongly relying on the notion of well-being to support their respective positions.Rapid progress in the sciences, including the development of the new CRISPR-Cas9technique, holds much promise for effective cognitive enhancement in children, andthis makes proper ethical assessment an urgent matter.Arguing that enhancement is here to stay and that prohibition is not a feasible optionin a globalised world, I suggest that the debate should instead focus on whatcognitive enhancement in children is likely to mean for the welfare of children.Addressing the question of whether enhancement of intellectual abilities in childrenis likely to lead to the creation of ‘superhuman’ disabled children – that is, childrenwith superior or even yet-unseen cognitive capacities but a disability in some othersense (medical, social or both) – I draw on evidence from various fields, includingeducation, law, disability studies and sociology, to demonstrate that the positiveeffect of cognitive ability on individual well-being is frequently overestimated andcan thus not serve as a moral justification for cognitive enhancement. Furthermore,the current legal environment with regard to children with higher intellectual abilitiesgives cause for concern about the well-being of future cognitively enhanced childrenand urges us to address prevailing shortcomings in educational provision beforedeliberately engaging in the creation of more cognitive potential. Suggesting that anymoral judgment about cognitive enhancement should focus strongly on the endspursued, I argue that the welfare of children is endangered not so much by the newpossibilities and methods of enhancement as by the failure to fully appreciatechildren’s need for the provision of appropriate opportunities to match theirindividual abilities.

Organ donation is traditionally based on the notion of making a gift based on altruism. An important aspect of ‘altruistic gifting’ is commitment to a solidaristic approach to meeting transplant needs. In line with this, people are encouraged to donate their organs at death to a common pool for collective provision, or donate a live organ to another freely. Given a chronic organ shortage, proposals have been made to change this system to increase donation. Proposals include introducing some organ market or payment in the form of a reward to incentivise live or deceased donation. However, these proposals have been opposed because of the grip of ‘altruistic gift’ as the only ethically acceptable way to procure and distribute organs. To support the ethical acceptability of other systems, ‘altruistic gift’ has been subject to various criticisms. One criticism is the moral relevance of altruism: people may donate on other motives other than altruism; or, altruism is not the motive that underpins most deceased organ donations. Another criticism is the moral value of altruism: even if deceased organ donations are in general altruistic, altruism does not express communal virtues like generosity that support solidarity.A third criticism is the value of the concept of altruism when understood in the pure sense: ‘pure altruism’ fashions an unnecessary or false dichotomy – gift versus sale – in the way people can ethically relate and help each other. Consistent with or following this criticism, it has been argued that use of a financial reward to incentivise donation can be compatible with preserving donation as altruistic albeit in a ‘non-pure’ sense. ‘Altruism’ and reward can co-exist as motives for donation. This thesis concerns itself centrally with the third criticism. It argues that the concept of altruism delineates a distinctive moral ‘perspective’ of a common humanity that engenders a devotion to others’ interests. Accordingly, as I argue, ‘non-pure’ definitions of altruism are misleading as to how a financial reward can be compatible with altruism. From this, the thesis argues that introduction of a financial reward for organ donation would not preserve donation as altruistic. Based on an understanding of altruism as also a motive for ‘creative’ relationships, the thesis counters criticisms of its relevance and value to deceased organ donation under a gift model.As part of its legal analysis, the thesis considers the antithesis of ‘altruistic gift’: the idea of organs as property which places individual control on their disposition at its moral centre. It has been argued that organs should be owned as property so that individuals can sell them, or transmit them to relatives so that relatives can claim payment from donation. To provoke thought on whether organs should be owned as private property like any other, the thesis proposes an inheritance regime for organs with family as default successor.

This thesis seeks to explore the legal implications of the development of ectogenesis. Although this technology does not currently exist, indirect research into ectogenesis and the pace of reproductive medicine indicates that this technology is something that is inescapable from further research. The driving force behind this thesis is that ectogenesis needs to be thoroughly explored prior to any clinical research on human embryos and foetuses. Following an introduction in Chapter I, Chapter II addresses the ethics and legality of such research towards this technology. Chapter III and IV both examine the application of the current law to ectogenesis. Chapter III focuses upon viability and birth for the ectogenic foetus, whilst Chapter IV addresses whether it is ever permissible to ‘switch off’ the ectogenic chamber. What becomes evident is that the new technology cannot be made to ‘fit’ the old law. As a result of this, Chapter V proposes recommendations for a future regulatory framework for this technology.

This thesis seeks to examine how healthcare decisions are made for children, with a particular focus on situations where medical interventions that (1) are not intended to advance the medical welfare of the individual child (eg bone marrow donation and research without therapeutic intent involving young children), or (2) are contrary to the expressed will of the child (e.g. the imposition of life-saving treatment on adolescents who have refused it), are authorised by parents or the state. The authorisation of these procedures is contentious because they breach the child’s bodily integrity while either (a) lacking a clear therapeutic purpose with regard to that child, or (b) being imposed even though refused by a possibly competent adolescent. Their controversial nature has lead to attempts to justify these procedures, generally by the application of ideal-type adult-child relationship theories. The four papers at the core of this thesis examine these legitimising propositions, but demonstrate that they are insufficiently robust to legitimise the acts in question. Instead, this thesis raises questions about inequality; about why it is deemed acceptable to take the tissue of the vulnerable incompetent but not the capable adult; or why it is appropriate to impose different tests of mental capacity on the adolescent and the adult, or of competence on the ‘criminal’ child and ‘innocent’ teenager. It is proposed that the reason that inequitable treatment can occur is because adults sit in a position of power and authority relative to children. The common themes in all four papers are thus the issues of power, inequality and fairness. There is also a focus on the use of language, and it is argued that terms are used in academic debate about children’s healthcare issues that lead to a lack of clarity and transparency in discussions about the imposition of unchosen healthcare burdens on vulnerable populations. If we hold that children are morally relevant beings deserving of respect then debates about matters that concern them should take place using language that avoids obfuscation and the cloaking of adult interests.

Choice and Health Care: Fact or FallacyThis thesis sets out to examine the place of patient choice in English health care, primarily within the National Health Service and in relationship to English law with regard to (a) informed consents and information and risk disclosure, and (b) confidentiality and privacy in relation to the access to and management of patient information. The analysis in underpinned with a limited review of the associations between choice and respect for individual autonomy. Health policy rhetoric has been laden with references to pro-patient choice in recent years and yet this research re-affirms that in law (still) it is the negative patient choice that carries weight in matters of consent to treatment. There is (still) no place for real demand. Similarly, in individual medical information access and management there is no sanction for demand, even negative patient choice is bounded. In both aspects of health care the ‘choices’ are (rightly) limited and can hardly constitute choice as the consumer-patient might see it. What the three papers contribute is the recognition that restrictions in patient choice are necessary; to be supported and for some individuals should be even more fettered than that of the general public in the interest of that general public. The papers examine the language of choice and find it lacking in transparency, with the reality dissociated from patient engagement, information dissemination and shared decision making; so compromising trust. If the health care system is to genuinely respect the individual autonomy of the capable adult and not utilise choice language as covert method of policy implementation, the language of what is on offer and why, the reasons for information acquisition and use and why, needs to be part of the patient-practitioner discussion as well as clarified in policy.

This thesis seeks to examine how funding arrangements for cancer drugs and other treatments, which are not available to everyone within the NHS, are made available to some, on the basis of exceptionality. The escalating costs of cancer treatment and the life threatening nature of cancer make resource allocation decisions for cancer drugs particularly acute, and the recent changes to funding arrangements for cancer drugs within the NHS receive particular scrutiny.In the three papers at the core of this thesis, the concept of exceptionality is explored from legal, ethical and empirical perspectives respectively. The first paper reviews the legal origin of exceptionality as the basis for the allocation of resources for expensive treatments, and explores how the concept has been interpreted by successive judicial reviews concerning access to cancer drugs. Particular attention is paid to the role of social factors in determining exceptionality. Choosing to fund treatment for one patient, and not another, involves a moral choice. In recognition of this, the Department of Health advocates that decision makers use an ethical framework to support decision making regarding exceptionality. The second paper examines the strengths and weakness of Daniels and Sabin’s Accountability for Reasonableness Framework, which is widely used to support resource allocation, focussing on the Relevance Condition, and its applicability to resource allocation within the NHS. The final paper reports the findings of an empirical study examining how PCTs interpret the concept of exceptionality in practice, providing the first comprehensive insight into the factors which are considered in determining whether a patient is exceptional, and exposing some of the external influences on the decision making process. In conclusion, it is argued that whilst the need for discretionary health funding decisions arises in rare circumstances, where this is necessary such decisions should be made on a national, or at least supra-regional basis, to ensure consistency and fairness. If we cannot afford to fund all effective cancer drugs, and other treatments, we should not hide behind the concept of exceptionality, but should have a national debate about how we reach a consensus on which drugs to fund, and about how we pay for those treatments. Whilst acknowledging that cancer is a dreadful disease, it is also argued that, in the absence of any convincing evidence that the management of cancer deserves preferential treatment, the special status of cancer funding within the NHS, which has become increasingly apparent in recent years, should come to an end.

Like the rest of the western world, the UK faces a significant increase in the prevalence of diseases associated with lifestyle. Smoking rates have reduced, but increasing obesity has contributed to alarming increases in diabetes. Discovery of the correlation between behaviour and poor health has, since the 1970s, resulted in public health policies emphasising behaviour change, and personal responsibility; an emphasis that survived later research which demonstrated social, genetic and psychological determinants on behaviour and health. The latest version of the NHS constitution exhorts us to ‘recognise that you can make a significant contribution to your own, and your family’s, good health and wellbeing, and take personal responsibility for it.’ This thesis seeks to clarify the meaning and extent of personal responsibility for health, and at its core are four papers published in peer-reviewed journals. The first clarifies the concept concluding that it is best understood in a tripartite conception of a moral agent having obligations and being held responsible if he fails to meet them. The following two papers discuss the nature of the obligations, using utilitarian reasoning and arguments from analogy. First, an exploration of the moral obligations for our own health is undertaken via an analysis of the practice of tombstoning, jumping from height into water. I conclude that the obligations are of process rather than outcome, consisting of an epistemic duty to determine the health related consequences of our acts, and a reflective duty to consider these consequences for us and for those who share our lives. Second, following an examination of the moral status of blood donation, I conclude that despite its presentation as a praiseworthy and supererogatory act, it is more properly regarded as a prima facie obligation, supported by arguments from beneficence and justice. The final paper discusses the final part of the tripartite conception of personal responsibility for health: being held responsible. I discuss the nature of blame and extend the tombstoning analogy as a way of testing my own intuitions in response to an imagined adult son who has undertaken this dangerous activity. I argue that the notion of blame is not generally allowed as part of the patient – professional relationship, and yet without considering blame, the concept of personal responsibility for health is incomplete. I conclude that if the epistemic and reflective duties, individually applied, conclude that an obligation is owed, it is owed to those within personal relationships, and holding people responsible for their health-effecting behaviour is also best undertaken within these relationships.I conclude the thesis by considering the implications for professional practice. Inevitably this leads to consideration of the promotion of personal autonomy in health care. A more relational account of autonomy is suggested. Facilitating the epistemic duty so that individuals are better able to understand the risks of their behaviour requires rethinking of the way that health promoting material and information are presented.