Law, Social Justice & Global Development
(An Electronic Law Journal)
Balancing Collective and Individual Rights to Health and Health Care
Institute of Health,
School of Health and Social Studies,
University of Warwick, UK
This is a refereed article published on: 4 June 2004
Citation: Stuttaford, M, ‘Balancing Collective and Individual Rights to Health and Health Care’, 2004 (1) Law, Social Justice & Global Development Journal (LGD).
This paper considers collective rights to health. The global health policy context is one of shared responsibilities for health between the individual, communities, public sector, private sector and voluntary sector. As background to undertaking empirical research in England and South African, health policy from these two counties has been reviewed. The paper challenges the current universal application of individual health rights to develop a framework of collective rights, learning from alternative rights framework to the Universal Declaration of Human Rights. Based on a review of literature, a collective framework is proposed using the concept of interest groups. The paper begins by outlining the global health context of partnerships and the links between rights and responsibilities or duties before considering the use of interest groups in collective health rights. The application of a collective rights framework is considered for sustaining collective action, promoting equal access to procedures, achieving common goals and framing resource allocation decisions. However, there are potential limits to the collective health rights framework where interest groups have different relative power, there is lack of consensus on what health is and where there are resource limitations. This paper does not suggest that individual rights should be abandoned but contributes to wider debates on health rights by providing a framework to be explored further in empirical research.
Keywords: Collective Rights, England, Interest Groups, Responsibilities, South Africa
I would like to acknowledge the reviewer’s helpful comments on an earlier version of the paper and thank John Harrington for his comments and suggestions.
The aim of this paper is to contribute to debates on rights to health by developing a framework of collective health rights for use when exploring the right to health and health care. The focus is on South Africa and England. South Africa has had a Bill of Rights, in which health is a substantive right, for ten years. The United Kingdom’s Human Rights Act 1998, only came into force in by contrast came into force in 2000 although it has been a signatory to international agreements upholding human rights for 50 years. The development of health rights and relevant procedural rights in these differing contexts provides instructive and distinctive lessons when considering potential frameworks for collective health rights. This paper therefore draws mainly on these country contexts. The paper does not propose that individual rights are abandoned, but that collective rights are thought about as a way to further expand the implementation of the right to health. The paper considers how there needs be a balance between collective and individual rights. Assuming that rights and responsibilities or duties are intertwined, there also needs to be a consideration of individual and collective responsibilities.
The right to health is often expressed, as with other rights, in individual terms. For example, the Universal Declaration on Human Rights states: ‘Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family’ (UN, 1948, Article 25).
The right to health is widely understood to refer to the highest attainable standard of health (Braveman, P and Gruskin, S, 2003 and WHO, 2002). The WHO (2002) lists this as addressing the prevention, treatment and control of disease; access to health facilities and related services and; conditions in which the right to health can be realised (eg education, information, privacy, working and living conditions, participation, freedom from discrimination). This has implications for individuals and groups. First, these social, economic and cultural rights refer to services and activities that are seldom delivered to an individual, but to groups. Second, the focus of public health is on the health of the population as being linked to the individual. Third, the health of specific groups is increasingly being addressed at the group rather than individual level, for example the needs of asylum seekers and those experiencing medically unexplained physical symptoms (MUPS, such as chronic fatigue syndrome, multiple chemical sensitivity and Gulf War illnesses) (Zavestoski S et al, 2004). It is therefore timely to consider the rights of groups, not just individuals.
Not only is it important to consider individual and collective rights, but also the balance of responsibilities. While legislation and other instruments recognise the right to health, there is less clarity on who is responsible for delivering this right. There is increasingly a partnership approach to health that assumes all partners have shared interests in achieving health and that there is agreement among these diverse partners of what constitutes health. In reality, there are differing ideas about how responsibilities should be balanced and about rights to health. Bell (1996) asks: if it is the individual responsibility to eat a low fat diet, is it the community's responsibility to ensure families can afford fresh produce and low fat foods? If it is the individual's responsibility to take regular exercise, is it the community's responsibility to ensure the streets where they jog or walk are safe? While Marks (2002) argues that the key contribution of human rights to health is ‘clarifying the obligations of states’, the current modus operandi of a partnership approach to health, has led to increasing complexity in identifying who is responsible for the right to health. A collective rights framework will assist in illuminating this.
2. Why Consider a Collective Rights Framework?
2.1 The Global Policy Context of Health Partnerships
There is an inextricable link between health and human rights (Mann, J et al, 1999). A number of conventions, protocols and charters protect the ‘right to health’ at the global, regional and national level (WHO, 2002). The review of policies in this section shows that together with the increasing recognition in health policy of these rights to health, there is a move away from the State having a key responsibility for health, to partnership approaches that include the public, private and not-for-profit sectors and individuals. The right to health is set against a background of increasing complexity in the delivery of health through partnership approaches and the increasing awareness of challenges facing partnerships in addressing health inequalities and social exclusion. While research continues to explore how the challenges facing partnerships are overcome, research is lacking on how the shared responsibilities of partnerships will fulfil people’s right to health.
At an international level, the WHO recognises the right to health and also establishes joint responsibility across a range of structures and agencies. Indicators of health span these various agencies. Health for All in the Twenty-First Century (WHO, 1998, p v) states that ‘the realisation of the goals of Health For All depends on bolstering commitment to its key values by: providing the highest attainable standard of health as a fundamental right.’ Quality care across the life span means that ‘the relationship between local health service and the State will be defined in terms of the degree to which authority, responsibility and initiative are devolved.’ (WHO, 1998, p 37). Indicators of health-enhancing lifestyles will be monitored by focusing on changes in: health behaviour; health determinants; regulatory, fiscal, economic and environmental policy; and participation. These indicators place responsibilities on multiple partners.
At a regional level, the European Social Charter, as revised in 1996, similarly talks of a joint approach to achieving the right to health. It states: ‘With a view to ensuring the effective exercise of the right to protection of health, the Parties undertake, either directly or in cooperation with public or private organisations, to take appropriate measures designed inter alia: (1) to remove as far as possible the causes of ill-health; (2) to provide advisory and educational facilities for the promotion of health and the encouragement of individual responsibility in matters of health; (3) to prevent as far as possible epidemic, endemic and other diseases, as well as accidents.’ (Council of Europe, 1996, Article 11).
At a national level, in England, responsibilities for health are extended to the community. A paper published by the Social Exclusion Unit (Cabinet Office, 2001, p 3) explains how the modernisation of government includes a ‘“rights and responsibilities” approach that makes Government help available, but requires a contribution from the individual and the community’. An example is the New Deal for Communities programme which seeks to address multiple deprivation caused by poor job prospects, high crime levels, under-achievement in education, poor health and inadequate housing and physical infrastructure. New Deal is managed locally through partnerships from a range of sectors, requiring new ways of working. Under New Deal funding for neighbourhoods is dependent on community involvement.
While at the international, regional and national level, policy is clear on the importance of a shared responsibility for health, policies are less clear on the extent or ‘amount’ of responsibility each partner has. One of the reasons governments have been slow to recognise social, economic and cultural rights alongside political and civil rights, is because of the potential financial burden. Thus section 27 of the South African Constitution sets out a right to health, but only within the context of scarce resources: ‘(1) Everyone has the right to have access to: (a) health care services, including reproductive health care; (b) sufficient food and water; and (c) social security, including, if they are unable to support themselves and their dependants, appropriate social assistance. (2) The state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights. (3) No one may be refused emergency medical treatment.’
The preamble to the South African National Health Bill, introduced in 2003, refers to the above right to health, the right of every child to basic health care services and the right to a safe living environment. The Bill also aims to ‘promote a spirit of co-operation and shared responsibility among public and private health professionals and providers and other relevant sectors’. The South African Patients Rights Charter (South Africa Department of Health, 2000) lists twelve patient's rights and also places ten responsibilities on patients, including: living a healthy lifestyle, caring for and protecting the environment, and knowing the health services available locally and what they offer.
The South African example is mirrored in other countries, including England where policy guidelines state: ‘We believe in working across Government to attack the breeding ground of poor health – poverty and social exclusion – and we believe in creating strong local partnerships with local authorities, health authorities and other agencies to tackle the root cause of ill-health in places where people live.’ (TSO, 1999, p 3).
This brief review of international, regional and national policies illustrates the shift towards a partnership approach to health between individuals, communities, the public sector, private sector and voluntary sector. However, what is not clear in these policies, is the extent of responsibility for each partner where health is a human right.
2.2 Rights and Responsibilities for Health
The partnership approach outlined above is based to a significant extent on the argument that along with citizenship and rights, there are also responsibilities. The balance between the rights and the responsibilities of citizens continues to be debated. Increasingly notions of citizenship are linked to responsibilities. On the one hand, this shift can be linked to the communitarian ideals, as put forward by Etzioni (1995, p 1): ‘strong rights presume strong responsibilities’. In addition, the increasing emphasis on the responsibility of citizens is a trend that has been identified as part of neoliberal policies. In the late 1980s Conservative ministers in the United Kingdom began to talk of active citizenship and a transfer of responsibility for welfare from the state to individual citizens (Kearns, 1995). Osborne (1997, p 186) links this shift to increasing neoliberalism and identifies the phenomenon of ‘responsibilisation’ in which ‘managers are to be responsible for managing hospitals as businesses, general practitioners are to be responsible for managing and budgeting their practices, and patients and, of course, potential patients are to be responsible for being entrepreneurs of their own health.’ Osborne (1997, p186) describes the shift away from the welfare state as a ‘reversal’ in policy in which ‘neoliberal policies have made goods that had become necessities once again a matter only of pleasure (and indeed privilege)’. Dwyer (1998) similarly demonstrates that the British state is reducing its role as a provider of welfare and increasingly making access to welfare conditional on individuals meeting compulsory responsibilities. The increasing ‘responsibilisation’ for health, in which citizens, rather than the state, are being expected to take greater responsibility is being pushed both by the communitarian agenda of rights with responsibilities, and by the neo-liberal agenda of reducing the role of the state.
There are several implications of this ‘responsibilisation’. The increasing emphasis on individual responsibility fails to address structural health inequalities and poverty (Lister, R, 1998 and Purdy, M and Banks, D, 1999). For example, The New NHS (Department of Health, 1997) outlines a system comprised of a number of Primary Care Trusts and Health Authorities in which responsibility for health is increasingly devolved to the individual and in which the individual is reliant on access to an information network to access health care. However, Loader (1999, p 197) cautions that ‘the informational health network form of health care organisation both offers potential benefits to groups previously marginalised and raises the serious risk of reinforcing the current exclusion of those whose experience is constructed by their social circumstances.’
In addition, the extent of individual responsibility and the boundaries between state and individual responsibility are not clear. In the forward to Saving Lives: Our Healthier Nation, Tony Blair MP wrote: ‘I am determined that New Labour in Government will meet what we see as our clear responsibilities, and play our part in improving the health of everyone in Britain.’ (TSO, 1999, p v). In the following pages, the signatories to the document state ‘But individuals too have a responsibility for their own health. Everybody should try to look after themselves better, by not smoking, taking more exercise, eating and drinking sensibly. It's not the Government's job to tell people what to do. It is the Government's job to spell out the facts and quantify the risks on which individuals can make informed decisions.’ (TSO, 1999, p vii.) However, the document goes on: ‘We believe that individuals can, should and do affect how healthy they are. But we believe too that there are powerful factors beyond the control of the individual which can harm health. The Government has a clear responsibility to address these fundamental problems . . . Although people may know what affects their health, they can find it difficult to act on what they know, setting up a downward spiral of deprivation and poor health.’ (TSO, 1999, p 6). These extracts from English health policy show the state accepting a certain degree of responsibility for the health of individuals. However it is not clear how much responsibility lies with the state, and how much with the individual.
A partnership approach to health is dependent on accepting that with the right to health, comes responsibilities for health. However, it is not clear how such joint responsibilities for the right to health are to be negotiated and balanced. If the collective responsibility for health is the modus operandi, the exploration of a collective rights framework will assist in clarifying the boundaries of responsibility between various partners.