AIDS, civil liberties and public health interests 1987 Acquired Immune Deficiency Syndrome (AIDS) has come to be a matter of urgent public concern. Certainly, that’s the case for the BC Civil Liberties Association which, in recent months, has turned its attention to a number of issues raised by this deadly disease. We need not recreate here the portrait that has been painted of the gravity of this epidemic and its effects on individual sufferers. It is grimly available in a variety of media. Despite the bleakness of the prognosis, it is perhaps appropriate to focus first on some encouraging developments as a means of placing our concerns in a proper context. In laboratories around the world, work proceeds space on the development of drugs to combat the disease and vaccines to prevent it. In British Columbia, as in Canada, the government has displayed an awareness of the magnitude of the problem and has initiated some responsive measures. Locally, agencies of government, many public health officials, members of the medical profession and an array of community organizations (such as AIDS Vancouver and the Persons With Aids Coalition), as well as many individuals, have undertaken courses of action that are useful, informative and reassuring. We are, of course, aware that the adequacy and direction of government and private responses to this health crisis are matters for debate in the public forum, and much of that discussion is beyond the scope of this policy statement. The concerns of civil libertarians in this instance encompass, first and unsurprisingly, the protection of individual rights and freedoms, but equally, given the character of the crisis, they must include a range of public health interests. With respect to civil liberties, we believe we can offer some expertise; with respect to public health issues, we can but share the results of our deliberations, recognizing that our views, as carefully considered as we hope they may be, can hardly claim a status other than that of a contribution to a public debate. Although it would be our inclination to defend civil liberties simply as a matter of principle, it is our view that, fortuitously, in this instance, the protection of individual rights coincides with the public concern about the prevention of the spread of the AIDS virus. Contrary to some expectations, we do not hold to absolutist view of individual freedom. There may indeed be occasions where there is a conflict between public interest and individual liberty. And in theory, we can conceive of situations where individual civil liberties that normally obtain could reasonably be limited. Even in such rare instances we would went to maintain our vigilance to ensure that no unfair discrimination occurs. Interestingly, we do not believe that the present AIDS crisis poses such a choice. (In fairness, we should note that a great many of the statements contained herein carry the caveat "to date", or "at this moment". There is much about the disease that is unknown. Although, like others, we are attempting to formulate policy on the basis of projected scenarios, we cannot pretend to special, much less perfect, knowledge. The situation may change. So may our view of the appropriate place to draw a line. In the absence of sure information, it is our tendency to proceed cautiously, even conservatively.) Notwithstanding the comfort we can take from positive public measures, it would be naive in the extreme not to be apprehensive about possible injustices that could result from panicked public response to an, epidemic. To date—thanks largely to the efforts of those named above—that has not occurred. Apart from sporadic individual suggestions of an irrational nature, the discussion so far has been marked by a high level of intellectual responsibility. It is our aim to contribute to the maintenance of that rational, thoughtful, fair-minded public mood. In terms of public health, we think the problem can be concisely defined. Given that there is an aggregate of people infected with the virus (estimated to be about 50,000 persons in Canada as of March, 1987), and given that there are extremely limited means of transmission of the virus by this infectious aggregate (namely, through the exchange of certain bodily fluids—semen and blood—by means of sexual activities, the mutual use of IV apparatus or, much less likely—given medical protocols now in place—by blood transfusion), how can we dissuade people from activities that will spread the AIDS virus and, to put it positively, encourage behaviour that will prevent its transmission? First, we believe that the society—through its state agencies—ought to accept responsibility for sponsoring a campaign designed to inform everyone of the character of the disease, providing accurate information about its means of transmission as well as dispelling inaccurate conceptions of its methods of dissemination, and offering clear advice about the precautions necessary to halt its spread. We believe this information ought to be made available to the entire general public as well as being specifically and intensively targeted towards segments of the population currently engaged in what are known as "high risk" activities and to those who are infectious. In calling for a massive public education campaign—thereby joining a considerable array of groups and individuals who have already done so—it is our obligation not to pretend to sanguinity about the efficacy of such a program. In our reading of the literature, the results are mixed (ranging from reports of significant changes in behaviour to accounts of minimal behavioural alteration), and conclusions are premature. Further, the effectiveness of educational campaigns is not likely to be static. That is, the visible demonstration of the diseases fatal character as well as medical developments are likely to be affecting variables. Like others, we will continue to monitor the efforts underway. Nonetheless, we think that such a course of action merits a genuine effort as the best, most practical means we presently have at hand. With respect to civil liberties, we believe that the inclusion of information that dispels misconceptions about the transmission of the disease may go some way to reassure the public and to inhibit impulses toward unjust discrimination that might otherwise be excited by false beliefs. Second, the behaviour of the infectious and those who presently engage in "high risk" activities is crucial to preventing the spread of AIDS. It is at this juncture, perhaps, that a concern for civil liberties comes to the fore. Because we are dealing with population numbers of such magnitude engaged in behaviour of such a private character, we cannot reasonably conceive of measures other then those which call forth a high level of public cooperation on the part of a vast aggregate of individuals. Questions of fundamental justice coincide, we believe, with public health concerns. Let’s think about this in common sense terms for a moment. We (as a society) want to get a large number of people to do certain things and not do others with respect to intimate activities. We have a hypothesis that knowledge of infectiousness coupled with the availability of adequate counselling may greatly contribute to producing the desired altered behaviour on the part of those most in danger. (Again, in fairness, let us stress that the desirability of such measures as testing for antibodies to the AIDS virus, systematic tracing of the sexual contacts of the infectious, and the provision of counselling has simply the status of a hypothesis: again, the results of initial scientific studies are mixed, and the subject of education, testing, and tracing is presently a focus of debate within the relevant communities.) But let’s, for the sake of argument, say that testing, tracing and counselling are good ideas. The problem then becomes: what’s the best way to secure the cooperation of those we're most concerned to have participate in such a process? In our view, their cooperation is most likely to be obtained by creating conditions in which such persons can be secure in the knowledge that they will be treated fairly, and that their privacy will not be unnecessarily invaded. Certainly, a public education campaign helps to create such a climate. Additional measures, we believe, are necessary. Therefore, the BC Civil Liberties Association has undertaken a campaign to establish legislation that will protect people with AIDS or those suspected of having the disease against unfair discrimination. (The details of the proposed measures can be found in other BCCLA documentation and need not be repeated here.) Such a legislative framework, in our view, serves both fundamental justice and public health interests. By creating conditions of safety, we increase the possibility that people will be encouraged to do things that will prevent the spread of the virus. That is, we believe they will be more likely to submit voluntarily to testing and tracing procedures which, we have grounds for believing, will lead to altered behaviour that will reduce the spread of the virus. As well, the BCCLA commits itself to using its resources to defend those who are unfairly discriminated against. In addition, there are other issues to be considered in creating a context that will maximize cooperation. One of them that suggests itself—and has already been the subject of considerable deliberation—is the matter of confidentiality (or confidentiality/anonymity as the matter is sometimes known). Apart from recognizing the importance of the confidentiality issue, and joining with others in advocating maximum protection of privacy consistent with public health concerns, the detailed examination of this topic (which is quite complex in itself) is best reserved for another venue. Is there something more we can or ought to contemplate doing at this time? Importantly, local public health officials have not called for any measures or legislation beyond those contained in existing health laws, thereby indicating either a sense that those in place are adequate for what needs to be done at the moment, or a belief, that the advocacy of other formal measures will not be efficacious in achieving the goal of stopping the spread of the disease. There have been, here and there, suggestions for, or at least discussion of, forms of mandatory testing and tracing. It should be noted that local public health officers have not made such suggestions, and that the most recent conference of AIDS specialists in the US has rejected such proposals. We are further advised by relevant local communities and groups—e.g., AIDS Vancouver, PWA Coalition, the Vancouver Gay and Lesbian Community Centre, etc.—that, in their view, the imposition of such mandatory measures will be counterproductive in achieving public health goals. If the aim of such measures is the gathering of information that will lead to altered behaviour designed to stop the spread of the virus, it is argued that this can be better achieved by voluntary cooperation. That is, they anticipate that even limited mandatory measures will result in relevant populations being "driven underground," which will, in turn, call forth ever more extreme proposals for enforcement. Whether or not these speculations are cogent, it is incumbent upon civil libertarians to at least examine the matter to determine whether issues of principle are raised here. First, it must be noted that there are various degrees of testing and tracing: they range from blanket (all members of the general population) to widespread (members of specific segments of the population) to limited (e.g., relatively small groups who present reasonable and probable grounds for supposing that exacting some behaviours from them will aid public health goals). Second, let it be recalled that despite our passionate disposition toward civil liberties, we do not hold an absolutist position on the matter. Although it is sometimes thought that the "mandate" of civil libertarians is solely the protection of individual rights and freedoms, a more complete accounting would be that we are devoted to the preservation of individual rights and freedoms within the context of enhancing a self-governing democratic society. Perhaps it is useful to emphasize that this portion of the discussion is of a theoretical nature within the field of civil liberties and that, for the moment, we are severing it from practical considerations, and the interlinked question of public health interests. Rest assured that we will return to a more integrated discussion in short order. With respect to possible future proposals for blanket or widespread mandatory measures, we can see some problems with respect to individual rights and freedoms. Blanket measures (those applying to an entire population), apart from possibly being impractical, may well involve an undue invasion of privacy to no useful end. (Remember that here we are talking about requiring a population of some 25 million people to do something in order to locate, according to current epidemiological estimates, one-quarter of one per cent of that population.) Widespread mandatory measures (those applying to significant specified segments of the population) raise the likelihood that the groups targeted are exactly those most likely to be already the object of unfair discrimination, and it is unclear that we would be capable of providing them with adequate civil liberties protection. In both cases, then, one can envisage the possibility of some principled objections on civil libertarian grounds. What about some form of limited mandatory measures, then? When we use the phrase "unfair discrimination," we are clearly indicating that it is possible to contemplate some infringement of civil liberties that normally obtain which, under special circumstances, might be regarded as a "fair" limitation on individual freedom. If that is the case—and let us again underscore that this is a theoretical consideration—the only restriction on freedom that might be reasonably considered is that directly related to activities involving the spread of the AIDS virus. That is, since we have in hand medical information that assures us (so far) that the disease is not spread through any form of casual contact and only through particular forms of intimate contact, we are clear that discrimination against people with AIDS in matters of housing, employment, health care, etc., would be unfair (and hence we are committed to opposing such unfairness). Now let us return to a more integrated discussion of the matter. When we examine the possibility of some limited mandatory measures, we discover that the issues primarily posed are those of a public health nature rather than those of a civil libertarian character. At that point, therefore, we are inclined to inquire as to what is the better part of wisdom with respect to public health interests. Recalling the caveats previously entered, the evidence available to us suggests that limited mandatory measures (even if someone were to present a good argument for them) would produce benefits significantly outweighed by the potential benefits that might be obtained through programs of voluntary cooperation. To spell this out: while mandatory measures might locate a minuscule proportion of the endangered population, this would possibly be offset by a larger proportion of the endangered population "scared off" by the prospect and consequences of mandatory measures, irrespective of the guarantees we might offer them. Thus, the B.C. Civil Liberties Association is not calling for mandatory measures of any kind. Rather, we support the educational measures indicated earlier, and the anti-discrimination legislative measures described above that are designed to encourage cooperation on the part of those society is most concerned to reach. Like others engaged in this poignantly practical intellectual consideration, we are making an estimate of the probabilities of an array of scenarios, based on the best advice currently available from the medical, public health, and other relevant communities. As all would-be guardians of deliberation should, we, of course, always stand ready to reassess our position.