This chapter explores the ways in which patient organisations began to re-position the patient through emerging notions of health consumerism and patient autonomy in Britain. It does so by focusing on four areas. Firstly, it considers the place of autonomy within concepts of bioethics and consumerism as they developed during the 1960s and 1970s. Secondly, the chapter attempts to uncover what patients themselves thought of health care in this period. Thirdly, the chapter examines the work of the National Association for the Welfare of Children in Hospital (NAWCH) and their attempts to get hospitals to permit the unrestricted visiting of children in hospital. Finally, the chapter studies the activities of the Patients Association (PA) and their campaign to establish a right for patients to consent to participate in the teaching of medical students.

This chapter introduces the general themes of and rationale for the book. It explains the importance and scope of the field of bioethics, and of the scholarship of Professor John Harris within that field. It explains how the book’s focus is both on theoretical questions in moral philosophy, and practical questions in policy, health, and science. The chapter also offers an overview of the contents of the book.

Discussions of human dignity have burgeoned in bioethics. John Harris, amongst others, has been highly critical of the vague, and often unreasoned appeals that this involves. Whilst agreeing with much of his stance, it is argued that the concept of human dignity is not merely important but essential for bioethics. Various ways in which dignity has been appealed to in order to constrain autonomous action for self-harm or action that effects only non-autonomous beings ("dignity as constraint") are criticised, some of which appeal to Kant’s idea of human dignity. However, as applied to non-autonomous beings, this is a misuse of Kant, and anyway Kant’s use of the idea manifests a tension between using dignity as a constraint on autonomy and seeing it as reflecting the fundamental value of autonomy. A conception of "dignity as empowerment" founded on the moral philosophy of Alan Gewirth is outlined and defended.

This chapter analyses the different kinds of information generated by patient-consumer groups and the uses to which they were put. The first section of this chapter considers the purpose and meaning of information for patient-consumer organisations during the late 1980s and early 1990s. The second section of this chapter goes on to look at the activities of patient-consumer organisations both in terms of facilitating access to existing sources of information and in generating new kinds of information. The final section of this chapter assesses the long-running campaign by patient-consumer groups and others to introduce legislation that would allow patients to see their medical records. This chapter suggests that through their information-related activities, patient-consumer organisations were aiming to do more than create a ‘super-patient’ akin to the ‘super-shopper’: they wanted to promote collective as well as individual empowerment by helping patient-consumers as a whole to become better informed.

What is bioethics for, indeed what is ethics for? This introductory biographical essay gives some sense of what I have been trying to do in my life in bioethics and of some of the influences and events that have shaped its course. I explain what brought me into bioethics and science ethics and why I continue to feel that bioethics is important and worth the serious attention of anyone concerned with the future of humanity. I sketch a sort of intellectual biography which may help to situate my ideas and approach to bioethics in some seminal events in my life. These events start when I was twelve years old with the death if my parents and continue through periods as a factory worker, a salesman, a lawyer, then a student and finally a professional philosopher.

This chapter examines the development of patient complaints in the 1970s and early 1980s. It centres on three areas. The first concerns the activities of patient-consumer organisations around complaining. Groups such as the Patients Association and the CHCs played an important role in informing patients about complaints procedures and assisting them to make complaints, as well as using patient complaints as a tool to point to wider failings within the health service. Secondly, patient-consumer organisations also lobbied for the reform of complaints procedures. Complaints mechanisms in hospitals and family practitioner services were re-examined and reinforced, partly as a result of consumer group pressure. Finally, the capacity of the patient to complain was further strengthened by the introduction of the Health Service Commissioner, or the Ombudsman, in 1973. Complaint, this chapter will suggest, was an area of disputed territory that brought patient-consumers into direct conflict with the medical profession. For doctors, patient complaints were a threat to their ability to practise as they saw fit and posed a fundamental challenge to their power and authority. Yet, for patient-consumer organisations, complaint was both a vital consumer right and an opportunity to improve services for individuals and the wider population.

This essay begins by acknowledging the fresh and provocative contribution made to bioethics by John Harris’s book The Value of Life but it goes on to take a more critical look at Harris’s concept of the ‘person’. Harris’s ‘person’ is a technical abstraction, relied upon to do much of the moral work, both within the book and in later writing, though the concept has, since its first introduction, remained underdeveloped and poorly theorized. It is argued here that Harris’s ‘person’ is both anti-human and anti-humane leaving too many points of irritation in its application to the moral domain of bioethics. This chapter explores some of the limitations of Harris’s ‘person’ approach with examples drawn from ethical issues at the start of life and it offers an alternative account which argues to retain the anthropocentric, human and humane, account of the person.

Thought experiments of the kind ingeniously construed by John Harris are excellent tools if we want to gain deep moral knowledge. We construct such examples so that they can function as crucial tests between different moral theories, yielding conflicting implications in the examples, and we make an inference to the best moral explanation of the content of our considered moral intuitions about the cases. This provides us with a justified belief in the theory providing the best explanation of the content of our intuitions.

The Conclusion to the book reflects on its key themes through an analysis of recent developments around autonomy; representation; complaint; rights; information; voice and choice. Such a survey provides an indication of the distance travelled by the patient-consumer over the last 50 years. Many of the demands put forward by patient-consumer organisations appear to have been met. But numerous problems remain. It is difficult to see how patient-consumers can overcome completely the power imbalance with health professionals, and many issues, like complaints, are likely to remain fractious. The tension between individual demands and collective needs also persists, and though more attention is undoubtedly paid to individual desires such as choice, shared aspirations have not fallen away entirely. Rights talk, first employed by patient-consumer organisations in the 1970s, continues to hold groups and individuals in its thrall, despite its many drawbacks. History cannot predict the future, but these long-running issues seem set to continue.

This chapter starts by praising John Harris as ‘a hugely important and of course hugely controversial contributor to the field of medical ethics and bioethics’. It goes on to argue that while there are no necessary moral distinctions to be made between killing and letting die (or allowing to die or not preventing death) there sometimes are valid moral distinctions to be made between them. Furthermore, it argues that such distinctions can be morally relevant in clinical medicine, such that in some circumstances allowing patients to die is morally acceptable where killing the same patients in the same circumstances would not be morally acceptable. Citing material in Harris’s ‘The Value of Life’ suggesting that he might disagree with these claims it invites him to clarify his position!

Consider a simple thought-experiment: What if it were possible, say by dipping into a skin dye bath or using special pigmentation-altering lights in a converted tanning bed, to change one’s skin colour temporarily and reversibly? You can be "Shirley Temple" white this week, "Louis Armstrong" black next week, "Genghis Khan" or "Madame Butterfly" Asian the week after that. Temporary skin colour change could be used to combat racism in hiring, education, admission to special societies; to facilitate social interaction in teaching or travel; or to pursue aesthetic and self-identity interests. But would race-colour change be deceptive or morally problematic? At issue is whether a person is somehow "really" a specific colour and if so, whether it would violate "race integrity" (if there is such a thing) to change it. Is skin colour a basic constituent of personal identity? The underlying theoretical race ontology issues involve racial skepticism, racial constructionism, and population naturalism, and whether deracialised interaction among individuals and peoples of the world might be possible.