Issues Paper No. 11

THE ROLE OF THE LAW IN HIV AND AIDS POLICY
Julie Hamblin

 TABLE OF CONTENTS

Introduction
The proscriptive role of the law
The protective role of law
The instrumental role of law
Conclusions
Endnotes
References
Acknowledgements
Biographical Note

Introduction

Much has been written about legal rights and duties in the Acquired Immuno-Deficiency Syndrome epidemic and the importance of an appropriate legal response. With many policy responses being shaped by the all too familiar and often misconceived debate about public health versus individual rights, the delineation of legal rights and duties has been a necessary part of the policy debate. Moreover, the ongoing reports of serious and unjustified encroachments on the civil liberties of people with Human Immuno-deficiency Virus have established beyond doubt that the law has a central role to play in HIV and AIDS policy.

 The precise definition of this role, however, has not always been given such careful attention. We know that the legal response to HIV epidemic is important, but what should the legal response actually be? Can legislation, HIV-specific or otherwise, assist in strategies for the care and treatment of people with HIV and help to reduce the spread of HIV? What has been the experience, a decade into the epidemic, in seeking legal remedies for HIV-related discrimination? Are legal sanctions ever helpful in bringing about the changes that will be necessary to respond effectively and appropriately to HIV?

 Underpinning these questions is a central theme that will be explored in this article. This theme relates to the need to recognize and distinguish between the different levels on which the law can operate, and which are seen with all their nuances in the context of HIV and AIDS policy. At one end of the spectrum is the role of the law which follows an essentially proscriptive model, whereby certain forms of conduct are prohibited and made subject to criminal sanctions. The complex social and ethical dimensions of HIV, however, have called for more creative approaches to how law can contribute to HIV and AIDS policy. This requires an exploration of not only the proscriptive function of the law but also the ways in which the law can be used - or, on occasions, not used - in a constructive way to promote and reinforce the goals of HIV strategies.

At this point in the epidemic, with the experience of a decade of different legal responses to HIV to reflect upon, it is constructive to analyze the various models by which the law can be incorporated into HIV and AIDS policy. Three main models will be analyzed here. The first is the traditional proscriptive model that penalizes certain forms of conduct. The second model focuses on the protective function of the law and the need to uphold the rights and interests of particular classes of people, notably those infected with HIV or at risk of infection. Both these models have been widely used in responses to HIV epidemic to date. The third model, however, has been explored less fully. This model seeks to use the law actively to promote the changes in values and patterns of social interaction that lead to susceptibility to HIV infection.

 The distinction between these different models is not always clear-cut and a particular legal intervention may display elements of more than one model. However, an understanding of the distinctions is important in order to identify clearly what is sought to be achieved by a proposed legal intervention. This analysis can guide any decisions about when we should intervene using the force of law and when, in the interests of certain policy objectives, we should refrain. Unless these different roles are recognized, there is a risk that the full potential of the law to assist HIV and AIDS policy will be overlooked or, worse, that the law may actively obstruct an appropriate response to the HIV epidemic.

The proscriptive role of the law

 The impact of the law in its proscriptive mode on HIV and AIDS policy became apparent very early in the epidemic because of the particular epidemiology of HIV infection in developed countries. The two groups most affected by HIV in the West --homosexual men and injecting drug users -- were people whose sexual or drug-using activities constituted (and in some cases still constitute) a criminal offense in many jurisdictions. The existence of these criminal sanctions meant that legal concerns were drawn into the policy debate right from the outset. Our response to the activities that were placing people at risk of HIV infection had to be formulated in the context of legal prohibitions on these activities.

 The involvement of the law in HIV and AIDS policy in this way can be seen to have often obstructed rather than facilitated effective policy implementation. These are the laws, for example, that have imposed criminal sanctions on the sale of condoms in Ireland (Anonymous, 1991) and have led workers in needle-exchange programmes to fear they may be prosecuted for aiding and abetting an illegal activity or for possessing the traces of illegal drugs that remain in used needles and syringes (Godwin et al, 1991). They have caused those people who are most at risk of HIV infection to be reluctant to identify themselves as being at risk for fear of adverse legal consequences. In short, the law has presented yet another obstacle to effective strategies to minimize the spread of HIV and meet the needs of people already infected.

 Similarly, it can be argued that the enactment of proscriptive laws directed specifically at HIV has been counterproductive in the context of broader HIV strategies. Examples of this type of proscriptive law are laws for the compulsory reporting of HIV seropositivity (1), laws which require HIV testing of certain population groups, such as prisoners (Gostin, 1990) and immigrants (Hamblin et al, 1991), and laws that compel the disclosure of an individual's HIV status in certain circumstances (2). The coercive nature of these laws, which often impose criminal sanctions for non-compliance, far from encouraging conduct that will reduce the spread of HIV, may actively impede prevention efforts by alienating those people who are at risk of HIV and making it less likely that they will cooperate in prevention measures. For those working in the field of HIV, this is a familiar debate, and I do not propose to canvas it in detail here. For the purposes of the present analysis, the significant point is that lawmakers must be sensitive to not only the direct but also the indirect impact of legal sanctions.

 In the case of proscriptive and punitive laws, therefore, an appropriate legal response to HIV will most often have as its desired outcome the absence rather than the presence of applicable law. This may not be as easy to achieve as it might seem. Where criminal offenses exist in relation to certain HIV risk activities, for example, a policy of decriminalization may be politically unpalatable because of public controversy surrounding homosexuality or drug use which may be unrelated to HIV. Where absence of law is already the status quo, a policy that proposes essentially no legal reforms may fly in the face of the political imperative that policymakers be seen to take swift and decisive action to address the threat of HIV. It requires us to resist the appeal of the "quick fix" in favour of a less tangible response that recognizes the complexities and subtleties involved in expecting changes in behaviour.

 The particular dynamics of HIV infection suggest that proscriptive laws will rarely be an appropriate policy response if they seek merely to target the conduct of people with HIV or activities that give rise to HIV infection risks (3). In this guise, the role of the law is a negative rather than a positive one, and the challenges of HIV are such that an effective policy requires more than negative prohibition. Of all the different models the law can follow, the proscriptive model has the least scope for a creative application to policy formulation.

The protective role of law

 A second model for the role of law in HIV and AIDS policy focus upon how the law can protect individuals or classes of individuals from harmful and undesirable occurrences. This model has been of central importance in the context of the legal response to HIV because of the proliferation of discrimination against people with HIV (Tindall et al, 1990; Gostin, 1990; and Somerville et al, 1989) and because of the increasing recognition both nationally and internationally, of the interplay between AIDS and human rights (United Nations Centre for Human Rights, 1991; and World Health Assembly, 1988). Accordingly, legal instruments such as human rights and anti-discrimination legislation that embody the protective role of the law have been proposed as practical and effective ways in which the law can assist HIV and AIDS policy.

 Laws that protect individual rights and interests must, to be effective, incorporate a proscriptive element that imposes certain penalties for non-compliance, but they are not essentially proscriptive in their thrust. Equal opportunity legislation, for example, may prohibit certain conduct on the part of employers, landlords and others that is held to amount to unlawful discrimination, but the philosophy underpinning the legislation is that of protecting individuals against discrimination. The objective of the legislation is positive rather than negative: to engender respect for individuals and to promote human rights rather than merely to impose a prohibition on, for example, homosexual activity. It could be conceded that the distinction is one of emphasis rather than degree, but there is nonetheless an important conceptual shift between, on the one hand, regarding the role of the law as that of enforcing legal prohibitions and, on the other hand, viewing it as a mechanism for promoting and protecting individual rights.

 The legal response to HIV has drawn on the protective role of the law in many ways, but two protective functions of the law have been dominant, namely protection against discrimination and the protection of confidentiality for people with HIV or suspected HIV infection. In the area of protection against discrimination, human rights instruments have been invoked in the interests of people with HIV and, in some jurisdictions, new legislation has been passed strengthening human rights protection in this context (The Americans with Disabilities Act, 1990; and Equal Opportunity Act, 1984). Judges have been called upon to decide whether pre-existing human rights legislation can or should be given a sufficiently broad interpretation to cover new circumstances presented by HIV-related discrimination (Gostin, 1990). Consideration has been given to drawing upon international human rights conventions and declarations embodied in international law to strengthen human rights protection within domestic legal frameworks (Hodge et al, 1990).

 In relation to protection of confidentiality, the law has been invoked in a range of different ways. It has been used, for example, to uphold obligations of confidentiality relating to information about HIV status obtained by a hospital ( X v Y & Ors, 1988), to provide a remedy for defamation in a case of threatened disclosure of HIV status (X v Sattler et al, 1989), and in some cases to justify withholding the identity of an HIV-infected blood donor (4). In some cases, where existing confidentiality protection has been considered inadequate, legislation has been passed strengthening confidentiality safeguards (Public Health Act, 1991).

 These examples are not intended to suggest that the law has necessarily been exemplary in this context, for indeed many would argue that the law has fallen far short of what is required to protect the interests of people with HIV. Moreover, legal protection in theory may not translate into legal protection in practice if the legal process is too cumbersome, time-consuming or costly to enable people with HIV to exercise their legal rights. Legal remedies that apply in the event of unjustified discrimination or breaches of confidentiality must also be recognized as dealing only with the symptoms of the problem and not with the cause which lies with community prejudice and lack of sensitivity to the rights and needs of people with HIV. Even bearing these limitations in mind, however, the examples described above nevertheless demonstrate the extent to which the model of the law as a protective instrument has been incorporated into the response to HIV epidemic.

 It must be recognized that both the proscriptive and the protective model for legal intervention involve fundamental value judgements and, often, value conflicts in relation to what should be protected and what prohibited. As a result, each model operates on two levels, first by defining specific legal rights and obligations, and second by creating or reflecting certain values and rejecting others. These statements of values which are inherent in the law can influence and shape other policy responses.

 The distinction between the proscriptive and the protective roles of the law is important because it assists in determining whether active legal intervention is an appropriate policy response. While proscriptive and coercive laws may be counterproductive if they discourage the voluntary participation by people at risk of HIV in measures to reduce HIV transmission, protective laws may help to enlist the support and cooperation of these people in prevention strategies. Thus, although decriminalization or the absence of law may be what is sought within the context of the proscriptive legal model, decisive and firm legal intervention may be what is primarily sought to be achieved by a particular legal intervention therefore provides insight into its likely impact on broader HIV strategies.

The instrumental role of law

 The third model for legal intervention is the most controversial and its application is arguably the most problematic. Whereas the proscriptive and the protective models of legal intervention focus on the conduct of individuals or on the adjustment of rights and obligations as between individuals, the third model envisages a legal response to HIV/AIDS that will operate on a broader and more far-reaching level. This is the model which suggests that the law can play a proactive role not merely in mediating rights and obligations as between individuals but also in seeking to change underlying values and patterns of social interaction that create vulnerability to the threat of HIV infection.

 An appreciation of the potential role of the law in this context requires an appreciation of the emerging socio-economic patterns of HIV infection during the 1990s. In April 1991, the World Health Organization estimated that the cumulative total of people infected with HIV worldwide was in the order of 8-10 million. Of this total, more than 7 million infections were estimated to have occurred in the developing countries of sub-Saharan Africa, the Caribbean and South and South East Asia (WHO, 1991). Increasingly, it has been said, the disease is one that affects poor women of colour (Carovano, 1991), as race and gender patterns emerge in the demography of HIV infection. In the United States, for example, the incidence of new cases of HIV infection is affecting blacks and Hispanics disproportionately, while in some areas of sub-Saharan Africa, the rate of new infections is estimated to be almost three times higher among women than among men (United Nations Division for the Advancement of Women, 1990).

 These patterns suggest that one of the most significant risk factors for HIV infection during the 1990s relates not to sexual or drug-use activities as such but rather to socio-economic dependency. Because HIV infection is preventable, people who have access to information and appropriate preventive measures and have the means to implement these measures will be able to protect themselves against infection. At this point in the epidemic, therefore, the people who remain most vulnerable are those who are denied the means of protecting themselves against the risks of HIV because of economic need or powerlessness to control the basis upon which their sexual relationships take place. This may occur, for example, because a person's sexual activity is directed by his or her need for economic support, because preventive measures, such as condoms, are not accessible and affordable, or because poor health care (in particular, inadequate treatment of sexually transmitted diseases) increases transmission risks. For women, it may occur because their sexual relationships with men are determined by cultural values which are beyond their control and which are often compounded by lack of economic independence (United Nations Division for the Advancement of Women, 1990), or because of the absence of HIV prevention measures, such as virucide, that are exclusively within the control of women (Stein, 1990).

 The challenge of HIV and AIDS policy during the 1990s is to recognize the need to address not only what might be called the "HIV-specific" issues, such as HIV education programmes and research into new barrier methods to prevent HIV transmission, but also the underlying social and economic factors that deprive individuals of the power to protect themselves against HIV infection. Put in this context, the task is an enormous one and extends far beyond what is most commonly perceived as the scope of HIV and AIDS policy. Nonetheless, efforts to address the socio-economic risk factors for HIV infection are a critical part of an effective strategy to reduce the spread of HIV in the years to come.

 The changes required are dramatic and clearly far transcend the law and the legal system. But can the law be used as an instrument to provoke or reinforce these changes? One could adopt a well-known legal metaphor (albeit one with somewhat aggressive connotations) by suggesting that, in this context, there is the potential to use the law as a sword rather than a mere shield.

 One must be careful about making grandiose claims as to the extent to which the law can be used to bring about social and economic change. By the same token, however, the potential of the law to complement and reinforce other policy initiatives in this regard should not be overlooked, because legal interventions can address some of the social and economic factors that render particular groups of individuals susceptible to HIV infection (5). In many developing countries, for example, there exist legal regimes that entrench the economic dependence of women through land ownership and marital property laws which deny women independent ownership of property or through laws which deny women access to certain forms of paid employment (Longwe et al, 1990). Law reform in this area could have an immediate impact on patterns of economic support in these countries, which in turn could assist in permitting access to health care and in reducing reliance upon sexual activity as a source of income. Similarly, laws can be enacted which require minimum levels of participation and representation of socially disadvantaged groups in the policy process, either in relation to HIV specifically or to more general matters, such as economic assistance and health care. Such laws can help to ensure access to relevant information about HIV and, by the mere fact of participation, help to redress the social imbalance.

 One of the primary reasons why law reform has the potential to be effective in this way is that law in any form is an important expression of social and cultural values and can therefore be used to change these values. Where laws uphold certain customs or behaviours that give rise to HIV transmission risks, such as traditional marriage patterns in some cultures (Longwe et al, 1990), the abolition of these laws can provoke a questioning of the customs and values that underpin them. The active prohibition of certain conduct which may hitherto have been considered acceptable but which places individuals at risk of HIV can also be a powerful force for change. There is, therefore, a need to harness the symbolism of the law in all its manifestations -- proscriptive, protective, instrumental or otherwise -- and to use it to promote rather than impede the changes necessary to reduce the spread of HIV.

 With most policy initiatives for HIV, it is possible to envisage a legal intervention that could complement and reinforce the desired objective. These interventions will require a creative approach to the law which recognizes that the law can play more than just a direct proscriptive or protective role. They will also require a recognition of all the implications of a particular legal intervention on the direct, indirect and symbolic levels. With such an approach, there is a real potential to use the law proactively and constructively in the response to HIV epidemic.

Conclusions

 The three models of legal intervention that have been described illustrate the range of different ways in which the law can play a role in the response to HIV epidemic. All three models are potentially relevant, but it is important to distinguish between them in order to direct policy appropriately.

 The proscriptive and the protective roles of the law have already been widely utilized in legal responses to HIV epidemic. With the epidemic continuing to spread at alarming rates in many parts of the world, however, it is important that HIV and AIDS policy in the 1990s explores new and creative measures for dealing with the challenges facing it. We must fully exploit the potential of the law to promote and buttress other HIV strategies and, where necessary, to change the traditions and values that place people at risk of HIV infection. This is the most pressing and critical role for the law in HIV and AIDS policy in the 1990s.

ENDNOTES

 1. Provisions requiring reporting of cases of AIDS and HIV infection are now common in many jurisdictions; for Australia, see Godwin, J. et al; the United States, see Gostin, L.O.; and Canada, see Hamblin, J. et al.

 2. This most commonly occurs as the result of a compulsory contact tracing policy, such as that which is currently in place in Ontario, Canada, and which in some circumstances requires physicians to disclose the identity of HIV-infected patients to public health authorities for contact tracing purposes. This programme is carried out pursuant to [6], which permits the identity of HIV-infected persons to be disclosed where the disclosure is made "for purposes of health administration".

 3. Whether, in exceptional circumstances, proscriptive laws may have a role to play in a question not canvassed in detail here. It could be argued, for example, that criminal sanctions may still be appropriate in cases of deliberate or willful HIV transmission. The critical point, however, is whether the overall trust of the legal response to HIV/AIDS is essentially proscriptive in nature or whether it conveys a different message.

 4. The decided cases are divided on the question of whether the identity of an HIV-infected blood donor should remain confidential. In relation to the position in the United States, see Gostin, L.O.; see AB v Glasgow et al for the United Kingdom; and Australian Red Cross Society et al for Australia.

 5. Many of the ideas in this section grew out of my discussions and collaborative work with Elizabeth Reid, Policy Advisor on HIV/AIDS for the United Nations Development Programme, and I am grateful to her for her contribution. The ideas are elaborated in Hamblin, J., Reid, E.: Women, the HIV Epidemic and Human Rights: A Tragic Imperative.

REFERENCES

 AB v Glasgow and West Scotland Blood Transfusion Service (unreported) cited in Centre of Medical Law and Ethics: Despatches 1990, 1(1) at 5.

 The Americans with Disabilities Act (1990) PL 101-336, 104 STAT 327 (1990).

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 Australian Red Cross Society & Anor v "BC" (By her Litigation Guardian) (unreported), Supreme Court of Victoria (Appeal Division), 7 March 1991.

 Carovano K: More than mothers and whores: redefining the AIDS prevention needs for women. Inst J Health Serv 1991, 21:131-142.

 Duckett M, Orkin AJ: AIDS-related migration and travel policies and restrictions: a global survey. AIDS 1989, 3 (suppl. 1)S231-S252.

 Equal Opportunity Act (Victoria) 1984, s.4(1).

 Godwin J., Hamblin J., Patterson D.: Australian HIV/AIDS Legal Guide. Sydney: The Federation Press, 1991, p. 182.

 Gostin L.O: The AIDS Litigation Project: a national review of court and human rights commission decisions. Part I:The social impact of AIDS, JAMA 1990, 263:1961-1970; and Part II: Discrimination, JAMA 1990, 263; 2086-2093.

 Hamblin J, Somerville MA: Surveillance and reporting of HIV infection and AIDS in Canada: ethics and law. Univ Toronto Law J 1991, 41:224-246.

 Hamblin J, Reid E: Women, the HIV Epidemic and Human Rights: A Tragic Imperative. Prepared for the International Workshop on AIDS: A Question of Rights and Humanity. The Hague, May 1991.

 Health Protection and Promotion Act 1983 (Ontario). S.O. 1983, c20, s. 38.

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 United Nations Centre for Human Rights: Report of an International Consultation on AIDS and Human Rights, New York, United Nations, 1991.

 United Nations Division for the Advancement of Women: Interrelationships Between the Status of Women and HIV-Epidemic: a Review of Published Literature. Report prepared for the Expert Group Meeting on Women and HIV/AIDS and the Role of National Machinery for the Advancement of Women. Vienna, September 1990 (EGM/AIDS/1990/BP 2, 31 July 1990).

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 Acknowledgements

 This paper was prepared by Julie Hamblin and originally appeared in the AIDS 1991 Supplement of Current Science. Permission has been given to reprint.

Biographical Note

 Julie Hamblin is a partner with Ebsworth & Ebsworth in Sydney, Australia, and specializes in legal and ethical aspects of health policy. She has worked on HIV law and policy for many years in Australia, North America, Asia, Africa and Eastern Europe and is the author of texts on HIV law in Australia and Canada, as well as articles on a range of other health law issues, including confidentiality and the ethics of health resource allocation. She is a consultant to the United Nations Development Programme on legal, ethical and human rights aspects of the response to the HIV epidemic in developing countries.

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