ABSTRACT
In the past thirty years, patients’ organisations have become major players in the healthcare system. Their sizes and shapes vary. Memberships vary from a few dozen to several thousand people. Many patients’ organisations have professional staff – in some cases substantial ones – while others are run entirely by volunteers. Some patients’ organisations are subsidised by pharmaceutical companies, others deliberately keep the industry at arm’s length. Almost all patients’ organisations have close links with the medical profession. Typically, physicians and medical experts serve on scientific advisory committees; occasionally they also sit on the board. Established in the first place to serve practical purposes, patients’ orga-
nisations enable people to meet others who suffer from the same or a similar disease and to share practical information and medical knowledge related to their condition. Occasionally patients’ organisations also act as intermediaries between patients, care providers and insurance companies. Extending these primary, practical tasks, many patients’ organisations have also become active in political arenas. They lobby politicians and the media to gain attention for their members and the problems they have to cope with. They comment on government policy proposals, partake in government advisory committees and represent the interests of patients at parliamentary hearings and other forums where government and the medical world meet. They thus offer a voice to people who – due to chronic disease or illness – have a limited opportunity to make themselves heard; patients’ organisations are widely seen as welcome additions to the democratic process. They are perceived as encouraging what proponents of participatory democracy have called ‘inclusion’, i.e. the enrolment of people who traditionally have no or little voice in politics (Pateman 1970; Barber 1984; Young 1999). Gradually, however, the political role of patients’ organisations has
expanded beyond representing the direct interests of individual patients and their relatives. Increasingly, patients’ organisations contribute to debates on medical issues of a more general kind, including controversial
medical ethical issues. For example, in recent years the Dutch umbrella organisation for parents’ and patients’ organisations of hereditary and congenital diseases (VSOP) has taken public stands on politically sensitive issues such as pre-symptomatic testing, the triple-test, pre-implantation diagnostics, medical research with patients incapable of giving informed consent, genetics and medical examination at work, neonatal screening for untreatable conditions, and patenting genetic material (VSOP 2004). Member organisations of the VSOP and other patients’ organisations have also issued statements on contested subjects such as, for example, the use of embryonic stem cells in research. In other countries, patients’ organisations have taken similar initiatives. The role of patients’ organisations in public disputes on ethical issues
raises issues different from their role in matters that relate directly to the interests and practicalities of the people they represent. Illness strikes without regard to a person’s ethical, political or religious views. We may therefore expect that in spite of sharing many interests, on ethically controversial issues the opinions of members of a patients’ organisation may – and in fact often do – diverge. For example, whilst all patients will be interested in a cure for their disease, it is far from evident that they will all be ready to accept research that involves the use of embryos, even if that research comes with the promise of a future treatment for the illness. In cases where patients’ organisations have contributed to ethical controversies such as the debates on embryonic stem cell research, the legitimacy of their role therefore deserves scrutiny. In fact, discussions about legitimacy do not wait for social scientists and
other analysts to enter the debate. In some cases, these debates emerge within a patients’ organisation; in other cases, outsiders may question on whose behalf the organisation is taking a stand in an ethical debate, and why its views should be attributed weight. In this chapter, we will argue that the legitimacy of public actions by
patients’ organisations also raises questions for political theory. An analysis of the role of patients’ organisations in medical ethics debates may contribute to more general discussions about the role of public consultation in science and technology. In the past decade, public consultation has become a staple ingredient of innovation policy. For a long time, it had been widely assumed that adverse reactions towards new medical and technical developments resulted from ignorance and lack of knowledge amongst the general public, a situation, one would think, that could be resolved by providing more and better information. Over the past ten years, however, this view has declined. Since the early 1990s, a wide range of studies has shown that citizens are able to assess the consequences of science and technology for everyday concerns. It has been found that widespread public opposition results not primarily from lack of information, but rather from distrust of the authorities responsible for managing the widespread application of science and technology in practical affairs (EC-DGXII 1999; Hagendijk
2004). Moreover, changing relations of science and society have suggested the need for a new social ‘contract’ with science and for scientific knowledge that is ‘socially robust’ (Gibbons 1999; Nowotny et al. 2001). Policymakers have endorsed these ideas in their attempts to deal with public crises about issues like BSE, GM food and the anxieties about genetics (House of Lords 2000; CEC 2000, 2001). Rebuilding trust through participation has become a central issue in contemporary science policy. Consensus conferences, citizens’ juries and government initiated public debates about controversial scientific and technological projects such as nuclear energy, recombinant DNA and genetically modified food, have been developed to help achieve this (Banthien et al. 2003). Patients’ organisations, it has been argued, can also play an important role in these new forms of mediation (Callon 1999). Notwithstanding the enthusiasm for the ‘new modes of deliberation’, the
added value to democracy of the presence of patients’ organisations in public consultations and decision-making about controversial ethical issues remains to be explored. To what extent can patients’ organisations legitimately claim to represent patients on these issues? If a patients’ organisation raises its voice about a controversial issue, what exactly does it achieve – in which respects does its contribution differ from other voices that are raised? Do patients’ organisations add anything to the spectrum of opinions already expressed through other channels? In this chapter, we will discuss the role of patients’ organisations in
ethically controversial issues related to scientific and technological developments. Interventions of Dutch and UK patients’ organisations in debates on stem cell research for therapeutic cloning will serve as examples. Empirical details are based on written sources and on interviews with representatives of patients’ organisations in the Netherlands and the UK conducted in 2003. Stem cells are pluripotent, and it is claimed that they can develop into
any tissue or organ. In therapeutic cloning, the stem cell’s DNA is replaced by the DNA of another organism, the donor. Because cloned cells will be compatible with the donor’s immune system, therapeutic cloning is claimed to be a promising route to therapies for a wide variety of disorders. Muchcited target diseases that are thought likely to benefit in the near future from stem cell research are Parkinson’s disease, Alzheimer’s disease and diabetes. Although it is also possible to use adult stem cells, which can be found in bone marrow, for therapeutic cloning, scientists claim there is irrefutable technical justification for favouring embryonic stem cells. These cells are harvested from what are called ‘excess embryos’ that originate from IVF treatment cycles, or they are specifically grown for the purpose of stem cell research. These procedures have however become the subject of fierce controversy in several countries. Since the 1990s, the debates have focused on one question in particular: is it legitimate to use embryos for therapeutic cloning, that is, to use stem cells from embryos for the creation
of tissue or organs? To many, and in particular to various Christian churches, the use of excess embryos and embryos that have been created for the instrumental purpose of stem cell research is a clear violation of respect for human life and for that reason should be completely proscribed. Non-religious groups have also opposed the use of embryos for therapeutic cloning, among other things because of fears that it will lead to a commercialization of human life. Debates about this issue have led to different forms of national regulation. Whilst Germany legally bans all research in the use of embryos, the United States allows private enterprise to undertake embryo research but forbids public institutions to do so (Gottweis 2002). In the United Kingdom the law allows researchers to use embryos for research up to fourteen days after fertilization. In the Netherlands, the use of embryos for stem cell research is allowed, but under stricter conditions than those which apply in the UK.
