The Netherlands Institute of Human Rights (SIM) and the Panos Institute

Copenhagen, 4th May 1989

ABSTRACT: This paper which was presented at the Third International Meeting of people with AIDS/HIV. The author talks about the implications in the field of human rights with regard to the reactions of people learning about other's Aids/HIV-status and the measures taken to fight the very disease. Particular attention is given to the juridical approach of this problem adopted by the european governments, and more particularly by the Danish.

I was asked by the organizers of this Third International Meeting of people with AIDS/HIV to make a presentation on the relation between HIV-status and human rights, and the actual developments in this field. As a collaborator of the Danish Centre of Human Rights, the Panos Institute and the Netherlands Institute of Human Rights I have been studying these questions for more than one year now, and I suppose that this has been the reason the organizers asked me to hold a presentation on this complex issue. First of all, however, I want to express my very sincere thanks for the invitation, which I was very grateful to accept. I would also like to thank the Panos institute for its support to bring me me up to Copenhagen. I hope that my address may be an incentive to discuss certain specific issues in the working-groups scheduled for this afternoon, if not a help for elaborating a common policy to make others aware about the problems HIV-positive individuals (HPI's) and people with AIDS (PWA) face today. I a

m aware, however, that it is difficult to make an overview which is suitable to all nations, as long as national politics and social, economic and cultural situations differ from place to place. Consequently I will restrict myself to describe in general the human rights implications of the reactions against HPI's and PWA, and enacted measures to fight AIDS. I will pay special attention to the legal position of an HPI. I will do so from a broad perspective, as it is my opinion that many of the problems and human rights issues involved are rooted in deeper societal structures.

The anxiety about the rights of someone who is - or is presumed to be - susceptible to develop a certain life-threatening disease came together with the development of modern testing and screening methods. It was particularly through the advanced knowledge on the human body and its hereditary traits through research and developments in the fields of micro-biology, biochemistry and medicine the possibilities to make rather precise predictions on someone's health biology and life prophecy have been improved. The advantages of these methods are that - at least in some cases - medical interventions or preventive therapeutic measures can take place in an early stage. Accurate advice can also be provided on the most appropriate life-style or the impact of the genetic setting or present health status of prospective parents on procreation. The negative impacts of modern testing and screening methods, however, on various occasions overshadow these so-called advantages. Knowledge of one's health status is not alw

ays desired by an individual and in some instances can be considered as an unwanted interference with someone's privacy. The information not only may cause an important psychological burden, but the result may as well be that the person concerned may be denied access to all kind of social goods and services, such as work, social security, education, etc. The confidentiality of one's health status, particularly in relation to the right to privacy, are weakly defined. Jurisprudence and the interpretation by legal authorities have not established a clear-cut situation which grants more legal security to the individual. On different occasions an individual is asked to provide accurate information on his or her health status according to his or her full knowledge. The individual eventually is obliged to collaborate in processes to obtain further details on his status through the execution of certain tetst or screening methods. Medical examinations and health history forms are widely applied in society, ironically

enough particularly by those who cannot be considered to have accepted responsibility for the promotion of health or any other clear interest in public health. Medical examinations and statements on one's own health status have become "accepted" instruments for institutions providing (access to) social goods and services to reduce their financial risks. Health and the instruments to measure health/susceptibility for diseases have become more important factors for the non-medical sector to maximize their profits through the restriction of "avoidable" costs.

In the case of AIDS and HIV-infection we can discover similar patterns. AIDS, however, has some particular features which gave rise to special reactions:

1) AIDS is a new disease, surrounded by misunderstanding, fear, prejudices, racism and moral value judgements. The transmission routes of the HI-Virus touches on taboo issues such as love, sex and drugs;

2) The disease manifested itself in a way that members of some groups became harder hit than others. The groups reporting most cases are usually groups with an already less favourable societal position. They became labelled "high risk groups", as if their life-styles would have caused - if not at least facilitated - the spread of the HI-Virus;

3) So far no vaccine or therapeutic treatment method has been found to protect against infection or to eradicate the virus in the human body. The development of a cure has become a speculative subject for the pharmaceutical industry, surrounded by profit and public relations interest. On the other hand, there are no guarantees that in case a remedy will be found, the device will become soon and easily accessible to all people needing or wanting the means;

4) Since 1985 testing methods to determine one's HIV-status are widely available and easily carried out on a mass scale. Guarantees concerning the confidentiality of the testresult and the protection against unauthorized disclosure of this information have received littke attention;

5) There is an army of people employed and earning their livings thanks to the AIDS-crisis. A policy of collaboration or feedback from the actual target group, that is to say PWA and HPI's is generally missing. Representatives from these groups hardly benefit from the new job opportunities, although many well-paid jobs have been created which would require persons with certain skills and experiences PWA and HPI's might very well possess. In low budget organization, such as AIDS Hot Lines, AIDS Lighthouses and other AIDS service organizations, there are more PWA and HPI's active. However, also within these grasslevel organizations PWA and HPI's are underrepresentative, and there are even cases of HIV-related cases reported from within these organizations.

For governments - and particularly the health authorities - AIDS in the first place meant a threat to public health.

Epidemiological legislation was made applicable for AIDS and HIV-infection, and special directives became enacted to "contain the new disease" and to protect the so-called "general public" from HPI's and PWA. In this respect, in the first place we could refer to the measures prescribing certain behavioural percepts, both for people found to be HIV-positive and those considered to be at "risk". Secondly, there are "preventive" measures which have implications that are at least as far going. I particularly would like to mention legislation dealing with registration and notification, mandatory testing schemes, restrictions on procreation, travelling and residing, etc.

AIDS-related legislative measures usually are accompanied by AIDS information campaigns, telling people how they could protect themselves from the HI-Virus, while warning HPI's not to pass the virus to non-infected persons (sometimes with penal provisions backing these warnings). Although the contents and actual date of introduction of such measures differed (and differs) substantially from country to country, in general it can be said for those copuntries that have taken such an attitude towards the AIDS-pandemic that these official reactions have caused or maybe even enlarged a division in society. Societies became split up between HIV-negatives and HIV-positives, or sometimes between "the general public" and all those HIV-positive or presumed to be HIV-positive.

Information exclusively aimed at "the general public", marginalizing HPI's and PWA, has stigmatized and shared away all those with an actual or presumed HIV-seropositive status. For this reason it was stated at different international meetings that discrimination and stigmatization undermine public health and should be avoided (see: The London Declaration, World Summit of Ministers of Health, 28 January 1988). There are only a very few countries where the campaigns are directed to all population groups, respecting the different life-styles, and are exclusively dealing with facts. In this respect I would like to refer to the country that hosts this meeting, Denmark, where the health authorities have launched extensive and rather imaginative campaigns. In the Danish campaigns there were also calls for solidarity, integration and non-discrimination. On the other hand I should mention France, where legislation has been passed to protect the rights of HPI's and PWA, and to avoid the abuse of HIV-antibodies t

ests in all kind of settings. An HIV-antibodies test can only be carried out after strict informed consent. Employers, insurance companies, custom authorities, etc. have no right to inquire after one's HIV-status.

The underlying justification for governments to introduce certain restrictive measures usually is their obligation to guarantee a certain standard of health care is embodied in different articles in both international and national legal documents and comprises rights and duties for both governments and individual citizens.

The resulting obligations for governments, however, cannot be invoked to justify the protection of health of the "healthy persons" and to ignore the rights and special wishes of the "unhealthy" ones. The right to health care in combination with the non-discrimination principle prohibits as well a policy of providing health promotion information in a selective or discriminatory way. Likewise, the construction of hindrances in the health and counselling services, with the result that the principle of equal accessibility is eroded, are forbidden.

As is always the case with legal issues, one cannot look at single provisions but should take into consideration the entire text of the legal document, study the interpretation by courts and eventually consider more recent documents, proposals and drafts for new laws prepared by the legislator. One should particularly look at the provisions and articles which allow a derivation or restriction of a guaranteed right. One should be aware that the effect of all rights, likewise human rights, is limited. In general it can be said that a right reaches its limits when there is a situation of an individual claim or freedom conflicting with a societal interest or claim (or that of another member of society). An old philisophical phrase says that one's individual freedom ends as soon as the freedom of another is encroached upon.

The protection of "public health" can be a legitimate ground to limit or eventually restrict the rights and freedoms of individual members of society. The government has an obligation to protect the health of the community, inter alia to avoid that people become afflicted by contagious diseases. Consequently measures can be announced to combat the sources of infection. This, however, does not imply that all limitations and restrictions are legitimate. Restrictions of human rights should always be based on explicit legal provisions.

In this respect, it is important to know that some rights have an absolute character, and cannot be restricted under any circumstance - such as the right to life, and the freedom from torture, racism, inhuman treatment, etc.

Human rights that can be subjected to certain restrictions usually are accompanied by an exhaustive list of grounds and conditions that need to be fulfilled before the restriction will be declared legitimate before court.

The "public health" argument alone is not a sufficient reason to restrict the rights on an individual. For instance, according to the European Convention for the Protection of Human Rights and Fundamental Freedoms, the right to private and family life can be interfered with in the interest of public health, however only if at least the following conditions have been fulfilled (article 8 (2)):

(1) The interference was prescribed by law;

(2) The interference was necessary in a democratic society;

(3) The intervention does not strike the very heart of the right concerned.

In clear language: the protection of the "public health" is not automatically a sufficient legitimation to restrict the rights of an individual. There is a burden on the authorities to prove that there is a pressing social need to restrict that particular individual right to freedom, that the measure is efficient, balanced and does not go any further than absolutely necessary to protect the higher ranking aim of the authorities.

And here I come to the main issues I wanted to discuss with you:

- Which measures that interfere with the enjoyment of a human right are legitimate?;

- To what respect is the position of an HPI different from any other person to justify a special legal regime?

The answer to the first question can be rather short: only a very few measures that interfere with the guaranteed rights and freedoms of an individual can abide a legal examination: I am aware that the actual interpretation of the rights and freedoms depends on national legislation, which differs from state to state. Consequently, the health legislation may have quite different features. On the basis of national epidemiological legislation, some countries could introduce a mandatory notification and reporting system for cases of HIV-seropositivity. On the basis of international human rights law, notification and reporting systems should respect to a maximum the confidentiality of the information and avoid that the identity of the testee will be disclosed to a wider circle of persons, without the testee's consent.

A justification for a mandatory testing scheme is more difficult to derive from the provisions of international human rights law. An infringement of a person's mental and / or physical integrity is inherent in all kind of testing schemes. One could discuss the repercussions for the right to information. Some argue, and I am in favour of this view, that the right to information encloses a right not to know. Consequently, confronting a person with the result of a certain health examination can lead to a violation of this right to information, namely the right to remain uninformed on certain issues.

In the case of AIDS it is important to refer to the statements, made by international meetings, organizations, conferences, etc. On different occasions both Ministers of Health, heads of government, UN agencies and organizations dealing with health and human rights emphatically have dissuaded from obligatory testing schemes, restrictions on HPI's and measures that may deteriorate the social, economic and political situation of HPI's, PWA and population groups identified with AIDS.

As a conclusion I would say that the participation in an HIV-antibodies test, the confrontation with the testresult and the passing of this information to third parties only can take place with a person's voluntary given informed consent.

In my view, the encroachment on the right to privacy, physical integrity and information of measures - such as the preconditional taking of an HIV-antibodies test to obtain access to all kinds of social goods and services, or an obligation to inform others on a testresult - in most instances are illegitimate and cannot be justified by internationally recognized legal provisions. Both for public and private institutions there are almost no restrictions on demanding an HIV-antibodies test from those who virtually depend on their services. In case of employment, insurance or medical intervention it is unrealistic to say that one has a free choice as to decide to undergo an HIV-antibodies test or not. A person that depends on another is not in the situation of making a voluntary decision and cannot freely dispose of his or her rights, or enjoys his or her freedoms as he/she actually would like to. Work for most persons is an essential social good to earn one's living. At least some insurances are conditional to

enjoy "social security", another universally acknowledged fundamental human right. There are also rights to education, housing, health treatment, asylum seeking, procreation, etc. that become undermined as enjoyment may depend on one's HIV-seronegative status. For people that are not able or willing to provide such a certificate, those who decide on the accessibility of these rights have not been scared away to restrict or even deny access.

Although in this respect both public and private institutions are guilty of encroaching fundamental human rights, the main threat - at least in Europe - comes from the private sector. According to liberal conditions - adhered to by many governments at present - the authorities should not unnecessarily interfere with the horizontal relations between citizens. Constitutional provisions should only be applicable in the relation state-citizen. In this philosophy, the authorities should treat citizens as equal contract-parties, free to determine the contents of their agreements.

As pointed out above, in many situations we cannot contemplate parties as equal as long as one of them needs the collaboration from the other in order to live a human live. Governments who neglect this aspect commit a reproachable carelessness with the result that they permit that fundamental human rights cannot be enjoyed, or even become violated.

In the West German state of Bavaria, however, it were the state authorities that initiated the requirement of an HIV-antibodies test before individuals could be contracted by state services. People who test HIV-seropositive or refuse to undergo a test will not be employed, independent their actual health status. This policy was adopted at least by some private companies, with the result that a) with respect to testing, the informed consent principle is infringed, as the refusal to take a test has far-reaching consequences; b) for HPI's and PWA the right to work and to have access to work without discrimination is violated, both by the state authorities and private persons.

One of the main responsibilities and tasks of this meeting is to discuss the possibilities of attracting governments attention to these issues and, consequently, how to find acceptable solutions.

A second issue I raised before concerns the question to what extent the legal postion of an HPI is different from any other person.

The answer to this question can be rather short: there is no difference, unless it can be demonstrated that one's HIV-status is of such an imminent importance that a different treatment is necessary and justified.

As stated out before, knowledge of one's health-status, including one's HIV-status, belongs to the very private atmosphere and should enjoy consequent protection of the right to privacy. Unless the screening of individuals on certain susceptibilities, diseases or traits is based on legal rule, in principle the decision to undergo an examination, including an HIV-antibodies test, can only be a personal one. The same principle holds true for the decision of who to inform on one's health-status.

HPI's encounter overreactions and constant violations of their rights because of unfounded fears of AIDS/HIV-infection, together with the overidentification of both the disease and the infected persons with sex (sometimes called promiscuity) and drugs. I don't think I need to give here any examples, as I assume that most of you - unfortunately - have experienced these reactions from very close.

One of the reasons to organize this meeting is the frequency of the interferences with the rights of HPI's and PWA, taking place all over the world. It has to be made clear that these encroachments are unacceptable and need to be countered. Various initiatives have been developed to fight the violations of the rights of HPI's/PWA on a local and an international level. We are here today to discuss the possibilities of co-ordinating actions and developing a common policy. To this end I consider it necessary to sum up which organizations are already actively involved with this issue, and what they are actually doing.

On an international level I should first like to refer to the World Health Organization (WHO). The WHO has accepted the global

co-ordination of all AIDS-related activities and maintains close connections to most governments on the whole issue. Different from other United Nations agency, the WHO has no legislative tasks. This is to say that the collaboration with the member-states is on a somehow "voluntary" basis and that the states in the execution of their health care policies, are not bound to international conventions. With regard to AIDS, however, the WHO has developed several initiatives to promote a uniform attitude towards the AIDS-pandemic resulting in national policies that gear to each other. The WHO has been quite successful so far, at least all governments have shown willingness to establish contacts and to report on the AIDS situation in their countries. Since 1988, the Who has shown a keen interest in the issue of respect of human rights within the national AIDS-policies. In order to further this, the WHO has established close connections to other UN agencies, specialized organizations and commissions/committees deali

ng with human right questions. As examples I can mention the International Labour Organization (ILO), the UN High Commisioner for Refugees (UNHCR), the UN Development Programme (UNDP), and the UN Human Rights Centre. So far, most of them have admitted that AIDS has an impact on the achievement of their aims and respect of human rights in general. The WHO has arranged a range of meetings with representatives of the organizations to discuss the issue, to establish new guidelines in particular fields and eventually adopting policies.

Other intergovernmental organizations use to follow the WHO initiatives.

In Europe the situation is slightly different as two intergovernmental organizations have far-reaching competences and in some cases legislative authorities. The Council of Europe (CofE) has developed an active AIDS policy, which has resulted in important resolutions. The CofE is mainly interested in health, social and human rights aspects of AIDS and tries to harmonize European policies. A sub-committee of experts has not succeeded so far to draft a new document on the rights of PWA, due to divergences of opinions between the representatives from member-states governments. The European Court of Human Rights - established by a Council of Europe Convention - even can make binding decisions on cases that have been brought before it on the interpretation or the application of the European Convention for the Protection of Human Rights and Fundamental Freedoms. The institutions of the European Communities (EC) have been dealing particularly with the economical impacts of AIDS, such as the consequences for th

e right to free movement of EC citizens and access to work. AIDS and divergent AIDS policies can also imply a new obstacle towards the process of European integration. Some important (non-binding) resolutions and documents have been accepted by the Council, Commission and the European Parliament. Most initiatives came from the European Parliament and the Ministers of Health, meeting within the Council. The Commission has a special AIDS programme, as has recently shown interest to include the social and political implications of AIDS.

All these intergovernmental organizations in a way depend on the information and feedback from grass-roots organizations involved in the AIDS-field.

On a national level, all governments have established a national AIDS committee. The exact names and tasks of these committees differ, but they usually have a co-ordinate role within the country. Many of them, however, are exclusively concerned about health issues and neglect the social and human rights implications.

Most countries also have non-governmental organizations (NGO) dealing with the AIDS pandemic. For the impact of (the reactions on) AIDS on the enjoyment of the individual rights, let me just mention some organizations.

The Red Cross has national AIDS tasks forced in many countries, and tries to co-ordinate their activities. A (Western) European network has been established.

AIDS-Hotlines not only provide information on AIDS; more and more people who have encountered problems because of AIDS call these institutions. At the First International AIDS Hotline Conference (Amsterdam, April 1989) it was decided to collect these data and try to use them to adapt national policies.

The Panos Institute in London collects data from the entire world on the social, economic, political and cultural impact of AIDS - also called "The Third Epidemic". The Panos Institute has been particularly keen on identifying counter-productive measures and HIV-related discrimination. A special publication on this is scheduled to come out later this year.

The Henry Dunant Institute in Geneva, a research institute closely connected to the Red Cross and Red Crescent Movement, collects documents from all over the world dealing with HIV-related discrimination.

The International Commission of Jurists, and international umbrella organization for jurists and independent national jurists committees is deeply concerned about human rights involved in the AIDS-pandemic. The Commission has scheduled a conference on this issue for September this year.

Some AIDS service organizations from industrialized countries have shown concern with the situations similar groups meet in less industrialized countries. The "Deutsche AIDS-Hilfe" (German AIDS-Aid) has made brochures and sent condoms to Polish AIDS service organizations. The Swiss AIDS-AID has a similar policy toward Hungary.

The International Lesbian and Gay Association (ILGA) as well as the World Federation of Haemophilia are still considering to develop a special AIDS policy.

To the participants of the meeting I would like to say: seek collaboration with other institutions and organizations that have aims comparable to or overlapping with yours. The establishment of an international organization of HPI's and PWA should not be a goal in itself. The collaboration with others is necessary to reach as fast as possible the fulfilment of our aims: that is the full respect of the rights of HPI's and PWA and to be treated as "ordinary" citizens.

This meeting could be used to exchange information on how contact was established with both authorities and other organizations on a local and national level. We should also inform each other on measures, actions and campaigns that have had a positive impact on the achieval of our aims. Not in the least place, names and addresses should be exchanged to create an international network of body-positive groups all over the world.

It has been proposed from different sides to elaborate a Charter of Rights of HPI's/PWA. This Charter should indicate the indefeasible human right, which of course are also applicable in case of HIV-infection or AIDS. Additional, the Charter would mention the particular rights HPI's and PWA would be entitled to in order to enjoy full protection of other rights and to counter unfair treatment and discrimination.

My advice, however, would be not to draft such a Charter. I think a Charter for a special target group is only singling out the group and can have self-discriminatory effects. A special Charter will neither look at the features HPI's and PWA have in common with members of other social groups. Particular in the case of AIDS it is known that many of the problems stem from deeply rooted racism, homophobia, xenophobia, an aversion for drug users and prostitutes, if not general problems concerning the application of medical examinations, the importance of health status, etc.

We also have to be aware that the problems besetting AIDS/HIV-infection change swiftly and takes unforeseeable directions. It is almost impossible that a Charter will envisage and cover all these areas.

In the Netherlands a consumers-platform has been established in the field of insurances. In the platform the national associations of HPI's and PWA collaborate with the national organizations of consumers' affairs, haemophiliacs, gays and lesbians, (ex-)psychiatric clients, etc. I would strongly encourage the participants of this meeting to seek for similar forms of collaboration in the different areas whenever possible.

Changes in AIDS campaigns, public health policy, and legislative measures are needed in many countries. An international network of body-positive groups can facilitate the exchange of information and co-ordinate a common policy. I sincerely hope that this meeting will be succesful in a way that you have an opportunity of thoroughly discussing certain issues and learning from each others' experiences.

I wish you a very fruitful meeting.