HIV, AIDS and human rights

A correspondence

The following article appeared in the British Medical Journal of 27 April 1996. It was announced on the second page of the journal as follows:

"A close link has existed almost since the beginning of the AIDS epidemic between HIV prevention on the one hand and concern for human rights protection on the other. On p1083 Danziger argues that this linkage may gradually be weakened by the clinical, epidemiological and social developments of the past five years, combined with a growing recognition of the possible weaknesses inherent in strict voluntarism. She concludes that the emphasis on individual rights may eventually give way to a greater emphasis on the role of personal and social responsibility in HIV prevention." (My italics.)

I found the article vague but in some respects quite alarming. I wrote a letter criticizing the article and subsequently exchanged e-mails with the author. Below you can read the original article, the letter I sent to the British Medical Journal (which was published in the issue dated 3 August 1996) and my subsequent e-mails to Dr Danziger.


An epidemic like any other? Rights and responsibilities in HIV prevention

Renee Danziger

Throughout the 1980s and into the 1990s, HIV prevention has been closely associated with the protection of individual human rights. Traditional public health measures such as compulsory testing and isolation have largely been rejected as ineffective in public health terms and inappropriate in the context of human rights protection. HIV prevention has been based instead chiefly on elective measures -information, education, counselling, and voluntary testing. In the past five years there have been important clinical, epidemiological, and social developments in the AIDS epidemic. These changes, combined with a growing recognition of possible weaknesses inherent in a strictly voluntarist approach to HIV prevention, may herald a new approach to AIDS control which places more weight on social responsibility in the context of HIV prevention.

In a thought provoking essay on public responses to AIDS, Nancy Scheper-Hughes describes an "uncanny consensus" among social scientists and the international medical community regarding the best way to respond to the epidemic., This consensus is characterised by its linkage between HIV prevention on the one hand with respect for personal freedoms and individual human rights on the other.

According to this view, AIDS is unlike most other epidemics. The modes of HIV transmission, the stigma attached to the disease, and the absence of a cure all combine to render most traditional public health strategies inappropriate for AIDS control. Instead, effective HIV prevention requires elective measures such as education, voluntary testing, and counselling."

This is not to say that mandatory measures have been eschewed altogether. Russia and the United States are just two of the countries, for example, that require HIV testing of short and long term visitors. By and large, however, there has been widespread international support for a broadly liberal approach that couples AIDS prevention with the protection of individual rights.

This linkage has until now bestowed a special sociopolitical status on AIDS, but the epidemiological, clinical, and social developments of the 1990s may eventually erode this status. In effect, these developments are slowly bringing AIDS into line with other communicable diseases.

The normalisation of AIDS

Over the past 16 years, AIDS has evolved from an acute public health crisis into a chronic public health problem. It is every bit as serious a problem today as it was in the 198Os-indeed, in many respects more so; but epidemiological and clinical developments have had important consequences for the ways in which AIDS is perceived.

Unlike much of the developing world, most developed countries have not experienced the exponential increase in cases of HIV infection that was forecast in the earlier years of the epidemic. The discrepancy between predictions and actual rates of increase of infection has unavoidably detracted from the urgency with which the epidemic has come to be regarded. Policy makers have turned their attention elsewhere, media interest has dropped off, and financial support for AIDS information, education, and research has waned.

Other factors have also contributed to the "normalisation" of AIDS. The development of treatments such as zidovudine, dideoxyinosine, and dideoxycytidine, either alone or in combination, has opened new possibilities for delaying the onset of symptoms and prolonging the life of people with HIV related disease."

The development of new treatments has also influenced the debate on HIV testing. Until recently, AIDS was contrasted with other communicable diseases for which routine testing is common, because in the case of AIDS there was no treatment to justify routine testing. With this no longer entirely the case, there have been increasing calls for mass HIV testing.

Routine testing of pregnant women has been advocated, for example, so that those who are positive may be offered treatment with zidovudine (shown in one study to prevent two thirds of expected perinatal infections')." Mass testing has also been called for more generally on the grounds that the health benefits of knowing one's serostatus now significantly outweigh the potential social and psychological harms."

Growing recognition of social responsibility in AIDS prevention

The 1990s have also seen a small number of researchers and commentators beginning to ask whether social responsibility-as against individual rights-should feature more prominently than it has hitherto on the AIDS agenda. Scheper-Hughes, for instance, points to the bias inherent in voluntarism, which she argues ultimately disadvantages the most vulnerable sectors of the population. She describes Brazil's classically liberal response to AIDS-which rests on education and promotion of condom use-and shows how the emphasis on elective measures is dangerously misplaced, not least because poor, working class women are often unable to convince their partners to use a condom to protect them from multiple unwanted pregnancies, let alone from a disease that is viewed as a distant threat. Moreover, "the problems of ,educating' Brazilian men for 'safe sex' are overwhelming in the dominant, masculine sexual culture where 'excitement', 'transgression', 'pleasure', 'dominance' and 'danger' are part of the same semantic network."'

Scheper-Hughes challenges prevailing views on HIV prevention by suggesting that routine testing, followed by notifying the partner, might give more effective protection to working class women than simply promoting safe sex. Unlike Brazil, Cuba has based its HIV prevention efforts largely upon mass screening, contact tracing, medical surveillance, and the partial isolation of infected people." Admittedly, the consequences of positive test results in Cuba are "nothing short of draconian," but the AIDS control programme seems justified in public health terms: in sharp contrast to Brazil's tragic explosion of HIV, Cuba's epidemic seems to be relatively small scale. Scheper-Hughes is inspired by her findings to ask whether it may not be both practically and ethically acceptable to compromise certain notions of individual rights in the interests of epidemic control (and the saving of lives).

The eminent American sociologist Amitai Etzioni also departs from the individualist paradigm by suggesting that people with high risk behaviours have a responsibility to society to be tested and, in the event of testing positive, to provide the names of previous contacts so that they too can be tested. He acknowledges the risk of discrimination and suffering faced by people who test positive but argues that social responsibility should supersede the urge to protect the individual: "It may be harsh to say, but the fact that an individual may suffer as a result of doing what is right does not make doing so less of an imperative."" Michelangelo Signorile, an American AIDS activist, also explores this theme. A prominent champion of gay rights and the rights of people with AIDS, Signorile reflected recently on rights and responsibilities in the context of AIDS: "After much thought, I realise that I owe it not only to myself but to my sexual partners to know my HIV status. If I find I am negative, I have a responsibility to keep myself that way.... And if I am positive, I have a different but equal responsibility: not to put others at risk, and to understand that not all HIV-negative people are able to deal with the responsibility of safer sex.""

Signorile says that during the 1980s, the responsibilities of people with HIV were rather neglected, as many AIDS workers placed the burden of HIV prevention principally on HIV negative people. Reviewing the impact of the AIDS orthodoxy that dominated the first decade of the epidemic, Signorile writes poignantly: "Now it seems that some of what we did for those who are positive was at the expense of those who are desperately trying to remain negative."

Rights and responsibilities in HIV prevention

As the AIDS epidemic evolves, so too must our responses to it. It is beyond question that protection must be provided-both to HIV positive people (protection against discrimination) and to HIV negative people (protection against infection). Perhaps the best way of affording this protection is by shifting the terms of the debate away from individual rights towards a better understanding of individual and social responsibilities.

[End of original article]


The ensuing correspondence

6.5.96

The Editor
British Medical Journal
Tavistock Square
London
GB-WC1H 9JR

Editor,

In her article Renee Danziger (1) refers to an "uncanny consensus" concerning the need to protect individual human rights in responding to the AIDS epidemic. She appears not to have considered the possibility that the consensus might not be uncanny but merely correct. In any case, although her article argues against freedom and in favour of coercion, she never specifies what form this coercion should take. If Brazilian men cannot be educated to have safe sex because of the "dominant, masculine sexual culture", what form of coercion might be applied? Is Danziger suggesting the Orwellian television camera in each bedroom?

The few allusions she does make to coercive measures are hardly reassuring. Russia has a long history of persecution of homosexuals and its policy for compulsory HIV testing of visitors has been widely criticized, as has the United States' policy of refusing entry to visitors known to be HIV positive. Cuba's policy of forcibly separating HIV-positive individuals from their partners and locking them up is so monstrously inhumane that Danziger should be ashamed of her support for it, though she takes care to hedge her bets: the policy "seems justified" (is it or isn't it?) since "Cuba's epidemic seems to be relatively small scale" (my emphasis). If she has any objective reliable evidence that this brutal Cuban policy has reduced the incidence of AIDS in the country then I for one should like to see it.

Finally, the comments of Michelangelo Signorile are clearly intended to provide an argument in favour of individual responsibility rather than coercion. I believe that he would object to seeing his remarks appear in an article which, whilst encouraging "shifting the terms of the debate", in fact advocates restricting the basic rights of persons with AIDS and those in high-risk groups.

Danziger's article contains virtually no facts or concrete proposals; much of it is innuendo which at times becomes very misleading - such as the vague implication that AIDS itself can now be treated. As a gay physician who has lost his partner and several close friends to AIDS I find its publication in the BMJ deeply offensive.

Yours faithfully,

Paul Bailey


Dear Renee Danziger,

Thank you very much for taking the time to reply to me.

I have not read Scheper-Hughes's article but I will try to get hold of a copy. In the meantime my knowledge of the treatment of PWAs in Cuba is taken from an article in "Gay Times" of March 1995 (pp13-16) describing a fact-finding visit made by a group of 11 Americans to Cuba in December 1994. After reviewing the long history of gay oppression by the Castro regime, and recent liberalization, the article goes on to describe one of the AIDS sanatoriums, "Los Cocos":

"People can leave the sanatorium on weekend or evening passes, sometimes with a chaperone, once they are deemed 'trustworthy' by their doctors and social workers, the final arbiters on their freedom of movement ... In early 1994, the Cuban authorities announced that they were revising the sanatorium policy, allowing some people with HIV and AIDS to live live at home if they should so choose ... Cuban AIDS policy has served to create a false sense of security amongst the general population, since it assumed that HIV is contained within the sanatorium. Relying on testing, the goverrnment has not sponsored a major educational campaign on safer sex".

This does not sound to me like "respect for human rights". But of course "human rights" is such a vague term that people can use it how they wish. Didn't Mrs Thatcher justify Section 28 as upholding the rights of children to be protected from homosexuality?

When you say, "respect for human rights is essential", you do not specify what you mean by human rights. You once again mention Cuba but you do not say exactly which elements of its policy you are in favour of. I am afraid that I still do not understand what precisely you are arguing in favour of (or indeed against).

Yours sincerely

Paul Bailey


Dear Renee,

Thank you very much for sending me Scheper-Hughes's article. I look forward to reading it.

In the end we shall probably just have to agree to differ, but I have to say with much regret that, after reading your article and your two e-mails, I still do not know exactly what you are advocating, beyond the fact that you support the Universal Declaration on human rights.

You say that my referring to Section 28 is "spurious" yet you mention the homeless of Manhattan. I agree that their predicament is scandalous, but I have never tried to argue in favour of the US AIDS policy. It is in _your_ article that one finds apparent approval of the US policy of refusing entry to the country to PWAs. What is your position on US AIDS policy?

You say that it is "incredibly difficult" to know exactly what is going on in Cuba yet in _your_ article you appear to approve of their approach. Of course the "false sense of security problem" is not unique to Cuba, but that is not an argument in favour of Cuban AIDS policy, it is an argument "tu quoque". What is your position on Cuban AIDS policy? People have died (my partner, my friends) and are dying of AIDS because the US authorities did nothing for a long time and then did too little too late. People have died and are dying because the French authorities delayed approving an American HIV test kit in order to approve a French one first. People have died and are dying because the British government preferred showing pictures of icebergs to talking about safe sex. I would agree with you on one point: official response to the AIDS epidemic has been suboptimal just about everywhere.

I am inclined to think that it is government that has not faced up to its responsibilities, not individuals.

Yours sincerely

Paul


Dear Renee,

I have now had the opportunity to read Scheper-Hughes's paper and to reflect further upon our discussion.

Let me say at once that I want to avoid creating false dichotomies. Scheper-Hughes writes, "AIDS was viewed as a crisis in human rights (that had some public health dimensions), rather than as a crisis in public health that had some important human rights dimensions". I should like to say that AIDS clearly is and always was both, and in my opinion the majority of gay men have accepted this. Gay volunteers, desperate to protect their friends from the ravages of the disease, have carried out a great deal of health education; equally, given the history of gay oppression, they have been very sensitive to any measures that restricted or seemed to restrict their basic human rights. (See, for example, "And the band played on" by Randy Shilts.) It is for this reason that I cannot share the view of Scheper-Hughes that compulsory HIV testing might under some circumstances be desirable.

I do agree with her in many areas; for instance that the reaction of the USA in closing its borders to PWAs is absurd; that Cuba is a "nightmare of medical 'discipline' verging on 'punishment'"; that the inferior position of women and children in Brazil is morally reprehensible.

But paradoxically I feel that Scheper-Hughes does not go far enough. In arguing for a radical feminist approach to anthropology and to human rights, she fails in my view to give enough weight to the importance of capitalism in keeping in place the immoral structures which she understandably abhors. The fact that "poor and working class women ... are unable to convince their partners to use a condom" should be seen as a criticism of the class system and not of an AIDS education poster. The story she tells of the delay in screening blood donors for HIV in the USA is not complete: the missing element was the reluctance of the commercial blood banks to incur the financial losses that would be entailed. The "scientific nationalism" of the French blood bank can be understood in the same way.

I am still not sure whether you yourself advocate, as Scheper- Hughes apparently does, compulsory HIV testing of high-risk groups. For the reasons given above, I cannot support it; I believe it is an unjustifiable infringement of human rights. What I can and do support is another type of infringement of "rights": the right of government and industry to place financial considerations above ethical ones. But that is perhaps a debate that would not fit well into the context of the "British Medical Journal".

Yours sincerely,

Paul


Dear Renee,

Your last paragraph:

>> Certainly capitalist structures and values have combined to exacerbate some of the worst aspects of the epidemic. Commercial interests in the blood industry is one example. The fact that so many PWAs have no health care, no homes, no jobs in some of the richest countries in the world is another. Examples are aplenty. I agree that class cuts across the problems facing the women about whom Scheper-Hughes writes. Economic independence would certainly strengthen them socially. But the machismo, aggression and brutality which Scheper-Hughes describes also reflect a gender issue which needs to be addressed as such.

I agree with you 100 percent.

Earlier in your e-mail you say

>>But can you not conceive of some situations in which measures which may have a beneficial public health impact would require some limitation on the enjoyment of individual rights? What is one to do then?

Then later

>>Personally, my problem is one of evidence: there is as yet no unquestionable evidence that compulsory measures work in public health terms.

This seems to me to sum up our discussion. I do not think it is *logically impossible* (or ethically impossible) that a situation might arise where a beneficial impact on public health would justify restriction of human rights. But as you say there is a lack of evidence to justify such a step. I think therefore it would have to be done on a case-for-case basis. However I think the means already exist to do this. For instance an HIV-positive man who knowingly had unprotected sex and understood the consequences could surely be charged with malicious wounding or even attempted murder and thus be detained. But this would be totally different from isolating people because there was a *risk* that they might behave in such a way (cf the Cuban "solution").

The SF bathhouses are a good example.

>> But wouldn't you say also that the measure was justified in terms of public health?

In terms of public health perhaps, but in terms of individual rights? I suspect that the closure of the bathhouses drove casual sex back into derelict buildings and parking lots. Many European bathhouses now practise a safe-sex policy which is reinforced by regular checks by the staff. This is in my opinion a more desirable solution for at least three reasons:

1. The saunas have become important sources for learning about safe sex.

2. Safe sex is carried out in a safe and regulated environment rather than in dangerous public areas.

3. The rights of the clientele to enjoy safe sex in a communal environment are respected.

Paradoxically none of this applies to the UK where sexual acts in a sauna (even safe ones) would probably risk prosecution. There was a similar ridiculous situation in Duesseldorf a few years ago when the local public prosecutor insisted that free condoms be *removed* from the saunas because they might encourage people to commit sexual acts!!

This e-mail started out as an attempt at a logical argument but seems to have got a bit discursive so I'll grind to a halt. Best wishes

Paul