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LGD 2004 (1) - Maria Stuttaford


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Balancing Colelctive and Individual Rights to Health and Health Care


Maria Stuttaford
Research Fellow,
Institute of Health,
School of Health and Social Studies,
University of Warwick, UK

Maria.Stuttaford@warwick.ac.uk


Abstract

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

Author’s Note

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.


This is a refereed article published on 4 June 2004.

Citation: Stuttaford, M, 'Balancing Collective and Individual Rights to Health and Health Care', Law, Social Justice & Global Development Journal (LGD) 2004 (1), <http://elj.warwick.ac.uk/global/04-1/stuttaford.html>. New citation as at 15/07/04: <http://www2.warwick.ac.uk/fac/soc/law/elj/lgd/2004_1/stuttaford/>.


1. Introduction

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.

3. A Framework of Collective Rights to Health

3.1 Recognising Diversity in Collective Rights: The Global Context

The exploration of an alternative, collective framework for health rights will seek to avoid the shortcomings of existing frameworks. The framework of collective rights will not dismiss individual rights and nor will it assume homogeneity - either globally or locally. Allison (2002) critically considers the use of a governance framework in environmental health and concludes, first, that diverse beliefs and objectives need to be recognised in community and individual rights. Second, that there is a need to guard against exacerbating health inequalities by ensuring that institutional mechanisms for upholding rights are in place (ie procedural rights) and that technical skills for using these procedures are in place across all partners. Third, there needs to be a shared interest in rights-based health which is reflected substantively in policies and legislation. This will require political will and institutional capacity.

The right to health is frequently based on Western notions of rights and the development of a collective rights framework will address this shortcoming by looking at alternative rights frameworks, in order that the right to health may be expanded. Rights are constructed, they are not naturally occurring and they can therefore change and respond to cultural context (O’Keefe, E, 2003). Against this Gready (2003, p 750) argues that ‘human rights are universal because they define the universal interests of the powerless . . . Human rights matter because they help people to help themselves, through an emphasis on human agency and individual empowerment.’ Moreover Moser and Norton (2001) present the argument that international norms and principles declared in conventions and policies, provide protection against new forms of vulnerability in states that are ‘collapsing’. However these conventions do not recognise a global heterogeneity of beliefs, interests and skills. Harvey (2000) critiques the Universal Declaration of Human Rights for failing to recognise varying scales of association and ways of life that exist across the globe. Shivji (2003, p 4) argues that: ‘We cannot continue accepting the Western civilisation’s claim to universality. Its universalization owes much to the argument of force rather than the force of argument. We have to rediscover other civilisations and weave together a new tapestry borrowing from different cultures and peoples’.

At the same time as recognising this heterogeneity, there may be opportunities for transfer of learning. Buse et al (2002, p 257) consider the globalisation of health policy and explain how ‘convergence can be seen as progressive, reflecting an increased sharing of knowledge, ideas, standards and technology across different policy contexts.’ On the other hand ‘convergence may result from inequities in power whereby the ideas, values and beliefs of the more powerful are spread either coercively (eg policy conditionality) or consensually (eg intellectual leadership)’.

The framework of collective rights might be a point for what Buse et al (2002) refer to as ‘progressive’ convergence and may contribute to Shivji’s ‘new tapestry’. The collective health rights framework will draw particularly on African authors such as Shivji (1989) who argue that ‘African traditional society is based on a collectivity (community) rather than on an individual’. For example, the Algiers Universal Declaration of the Rights of Peoples (1976) is a fundamental move from an individualistic to a collective approach to human rights and is written in the words of ‘every peoples’ rather than the individual of the Universal Declaration of Human Rights. Furthermore, it incorporates the duties and the rights of the peoples.

Developing a collective framework therefore seeks to recognise the rich diversity of beliefs, interests and skills at two levels. First, on a local level, but not subsuming individual rights. Second, on a global level, by learning from non-Western views of rights. Collective rights may manifest in a variety of ways and a typology of interest groups will be used to assist in describing this.

3.2 Interest Groups as a Way to Formulate Types of Collective Action

The development of collective health rights requires a means by which to capture and describe the structures and agencies that work towards collective rights. A typology of interest groups will be used for this. Human rights have become inextricably linked to government in that they depend on the institutions of government to uphold them. Human rights are dependent on citizenship and the rights of citizenship (Arendt, H, 1973, p 296). Healey and Robinson (1992, p 165) define interest groups as ‘organisations within civil society which attempt to influence the direction of government policy without necessarily seeking political office. They are treated as a mechanism by which a diverse range of views can be absorbed into the democratic process.’ Walt (1994, p 100) lists the following defining characteristics of interest groups: ‘they are voluntary bodies; they aim to achieve some desired goals; they do so without attempting to infiltrate the process of decision making to the point of adopting formal government roles’. Interest groups are therefore sufficiently broad to capture the ways in which both citizens and non-citizens interact with government in terms of health rights. (This paper restricts the discussion of a collective health framework to government and civil society. The role of the private sector in transforming health care has been realised to a greater degree in England than in South Africa. However global trends suggest a consideration of the private sector will be important in future discussions of a collective health rights framework.)

Healey and Robinson (1992) and Walt (1994) classify interest groups according to the goal of the group. ‘Sectional groups’ have a restricted membership and their primary goal is to protect the particular interests of their membership. Members will have a particular productive role in society and will have the power to bargain with government using sanctional pressure such as withdrawing or restricting their labour. Examples of sectional groups are trade unions and professional bodies such as the British Medical Association. The second type of group to be defined by their goals are ‘cause groups’. Membership of cause groups is open to any person that supports the particular issue or cause of the group for example LoveLife in South Africa, consumer councils and women's groups.

As Walt (1994) points out, such classifications are only useful in assessing the extent to which pressure groups are influential through, for example, the power of the strike ballot or consumer buying power. An alternative way of defining interest groups is to assess how far they are recognised or legitimised by government. In some instances groups may almost be an extension of government eg political party think tanks. Insider groups are those which are consulted by government and play a role in policy formation (for example, the National Progressive Primary Health Care Network, in South Africa). Governments may use the close relationship to gather information or test changes to policy. At the other end of the scale are outsider groups who lack legitimacy with government, (for example the National Medical and Dental Association which was formed as an organisation for health professionals to promote human rights and oppose apartheid).

The transitory nature of some groups can further be explained by Walt’s (1994, p 107) use of the concept of ‘threshold groups’. These are groups that are sometimes accepted as insider groups (especially in terms of service delivery, or implementation of policies) - but often perceived of as outsiders. The Treatment Action Campaign in South Africa is a threshold group in that it has undertaken programmes of civil disobedience to raise awareness of HIV/AIDS, while at the same time seeking to find ways to negotiate with government on access to antiretroviral drugs.

Collective action to seek collective rights does assume certain political and civil rights (such as freedom of association and freedom of speech). However, this framework is a way of attempting to capture and begin to explore the diverse ways in which groups locally, nationally and internationally are seeking to expand procedural rights through which they can advance health goals. In particular it is suggestive of novel and informative paths for future empirical research.

3.3 Applications of a Collective Health Rights Framework

A framework of collective health rights will expand the development of procedural rights and assist in framing resource allocation decisions. Substantive rights refer to specific, enforceable rights to certain resources, while procedural rights refer to access to an accountable decision making process. Agreements may include the right to health but there need to be the institutions, resources and skills to enforce this right. The typology of interest groups, will provide a means by which to describe the structures and agencies that work towards collective rights.

The first application of a collective framework is in improving the sustainability of procedural rights and the activities of interest groups. In Venezuela organised community groups participated in public health planning which built on judicial and legislative determinations in Latin America regarding access to antiretroviral treatment. The National Assembly adopted a new constitution, which people approved in a referendum and which included the right to health. The new Constitutional Court held that people living with HIV must have access to antiretroviral treatment if covered by the state health system (Mac Dowell, 2002). By engaging with civil society on a collective basis, the collective right to health was assured. This describes the action of cause groups, in which action was successful over a particular substantive issue. However, in order for the right to be implemented and sustained in practice, procedural rights need to be in place. Marks (2002) argues that this can be achieved by sustaining the engagement with civil society that began on the substantive issue. Braveman and Gruskin (2003) go further by arguing that an important way of promoting the right the health is to institutionalise the procedures for human rights in all aspects of the health sector. However, this may lead to certain interest groups loosing their definitive autonomy.

Second, collective rights will promote the development of procedures that are equally accessible to all parties. For example, Kanaaneh (1995) explains how one institution, the International Water Tribunal (IWT), established by organizations in the Netherlands and supported by other European environmental groups, has been established as an independent forum for adjudicating water issues. The IWT determines responsibility for water provision and makes recommendations to responsible parties to end unacceptable practices. Kanaaneh goes on to detail the case of Husseinhey, a Bedouin Arab village in Israel unrecognised by the state. A shortage of potable water and unsanitary waste disposal led to health hazards which resulted in an outbreak of hepatitis A. The IWT ruled that safe drinking water should be provided to residents. While residents of the villages had been able to lobby on their own behalf on the general issue of access to drinking water, in order to prove the case in a judicial form, the communities required the assistance of a physician, a nurse, an engineer and a lawyer (Kanaaneh, 1995). Thus, gaining access to the framework for supporting health rights can be complex and require extensive resources. Where the frameworks are not in place or cannot be accessed, health inequalities may arise. Developing frameworks that can be accessed by groups may ease this process.

Third, where there is an identified group with certain common needs, a collective framework will be more useful in achieving their goals. A Council of Europe Conference in 2003 made several recommendations to improve the access to health care of the Romani community (CEC, 2003). The actions recommended recognise the indivisible nature of political, civil, social, economic and cultural rights. However, these rights are still viewed as individual. For example, engaging with Romani women, combating discrimination by health care workers, developing a system of client records for mobile populations, access to information about heath care and services, are all actions that will be taken at a collective rather than individual level. Collective structures would frame the provision of health care to such a defined group of people with specific common needs.

Fourth, viewing rights in a collective framework may assist in framing resource allocation decisions. There is difficulty in agreeing how to ration scarce resources. However it might be possible to establish a set of procedures that are democratic and fair on which to base to such decisions (Daniels, 2003). In the well known case of Soobramoney v Minister of Health, KwaZulu Natal 1998 SA 765 (CC), the South African Constitutional Court refused to overturn the defendant’s denial of kidney dialysis to the plaintiff. The Court held that, although section 27 of the South African Constitution sets out the right to health and health care, enjoyment of this right is subject to effective rationing in the context of scarce resources. Sarkin (1999) questions the Constitutional Court for not asking the State to account for its resource prioritisation decisions. A collective framework may not have changed the outcome of the Court’s decision, however it would have facilitated the prioritisation process by identifying and defining interest groups more clearly and made the decision more transparent.

4. Limitations to a Collective Health Rights Framework

The previous section has attempted to illustrate how a framework of collective rights will assist in clarifying responsibility for the delivery of health rights in the context of shared responsibilities. However, such a framework will also have shortcomings. This section now explores the potential limits to a collective framework.

First, groups will have different power relative to each to other. Kearns (1995) and Lenaghan (1997) argue that a rights based approach focuses on the interests of the individual rights-holder and excludes the interests of the community and that this may lead to disproportionate benefits to the informed and articulate and to those with the greatest resources at their disposal. While this happens at an individual level, it might also happen at a wider collective level. As Dolan (1996, p 66) points out, ‘the whole human rights movement rests on the premise that the power and vulnerability of specific groups relative to the state and to one another can be regulated and moderated through legal mechanisms, including bills of rights, constitutions, and international conventions.’ Civil society is not homogenous or equal and collective rights need to guard against certain interest groups having greater access than others due to imbalances in power. Morris (1995) envisages civil society in South Africa being sufficiently empowered in the longer term to be able to hold the state to account through actions that would range from protecting citizens' rights to ensuring consistent and equitable longer-term development. However, Reitzes (1995) and Ferguson-Brown (1996) question the likelihood of this role being fulfilled given the effects of the previous apartheid regime. ‘It is from this heritage of autocracy and oppression and unequal services that community development is now trying to find its footing for a 'people-driven' or 'bottom-up' approach’ (Ferguson-Brown, 1996, p 187). Glaser (1997) questions whether the South African constitution is sufficient in the context of the legacy of inherited inequalities where 'civil society' cannot be presumed to have the homogeneity, purpose or resources to take responsibility for upholding and enforcing rights. Even though the social-political environment has now swung strongly in favour of facilitating organisations of civil society, it is questionable whether community-based partners are able to form equal partnerships through which they can enforce their rights.

Second, members of a group may not agree on what the right to health is. To be a community does not necessarily mean there is unanimity on how to achieve health or even what ‘good’ health might mean and that individual rights still have importance. Bell (1996, p 781) argues that ‘it is an impoverished notion of community that would require a particular view of optimal health, just as it is an impoverished notion of rights that would only allow individuals to claim as rights those things that do not conflict with the prevalent view of optimal health.’ Different views of ‘good health’ will exist both within and between groups, thus making it difficult to define when the right to health has been achieved.

Third, it is important to recognise the resource limitations of many interest groups. Do non-government organisations and community-based organisations have the resources and skills for taking on responsibilities? Shifting the balance of health care from the public sector to the voluntary sector, especially without shifts in resources, runs the danger of overwhelming a community (Mayo, M, 1994). On the other hand, transfer of decision-making and responsibility to local communities capitalises on local knowledge and strengthens democracy (Chaskin, R J and Garg, S, 1997).

Fourth, a collective rights framework, based on the inseparability of rights from responsibilities and duties, needs to consider not only who defines the rights, but also who defines the duties. De Grunchy (2003) considers the UK policy of care in the community and poses the question of knowing how to balance the right of the individual mental health patient with the right of the community to be protected (de Grunchy, J, 2003). Kinsman (1996) recounts how gay community and AIDS activists in Canada pioneered safe and safer sex organisations. He explains how sexual governance was based on the notion of responsibility not only to oneself, but also to the community. Moreover, this responsibility was defined neither by the state nor by professional or public health practices. As this early organising was mainstreamed, public health and other professionals adopted and adapted the language of responsibility as a form of regulation. Those practising safe sex were now deemed responsible citizens, whereas those who were not practising safe sex, were labelled as irresponsible and a risk to the wider community (Kinsman, G, 1996). Of course, where the state/professions take over the autonomous activity of a social group in such ways, there is a risk that the state action will lack legitimacy and/or become coercive.

This section has shown that while interest groups will have a role to play in a collective rights framework, there are limitations with regard to relative power, conflicting definitions of health, resource limitations and how the collective duties or responsibilities that go with collective rights are defined.

5. Conclusions

There is growing recognition of the right to health. However this right is frequently framed in terms of individual rights. In a context of shared responsibilities for health, a collective health rights framework will assist in expanding the achievement of the right to health. The partnership approach to health assumes a joint responsibility however the boundaries of responsibility are seldom clearly articulated. The collective rights framework challenges the universal right to health, arguing that diversity needs to be recognised and can be used to expand and share global knowledges to develop more appropriate frameworks. Interest groups provide a means by which to explore the structures and agencies involved in collective rights. For example, sustaining collective action while maintaining autonomy, providing equally accessible procedures, achieving common needs and goals and facilitating resource allocation in the context of scarce resources between groups. However, there will also be shortcomings in a collective framework. For example, different relative power between groups, lack of agreement on a definition of health, limitation of the resources needed for effective group action and problems over how collective responsibilities are defined.

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