B. Human Rights Considerations Raised by Nominal Reporting of HIV/AIDS

Reporting cases of AIDS and HIV infections by name to public health registries raises human rights concerns. At stake is the core issue of whether the goals of public health that are to be served by requiring clinicians to breach confidentiality in making such reports - even to registries that are secured against unwarranted disclosure - justify overriding the claims of medical privacy. The issues are not new to AIDS; they have been raised repeatedly in the context of other disease reporting requirements, especially when the conditions involved were stigmatized.

The broad principles to guide consideration of this issue have been provided by the Office of the United Nations High Commission for Human Rights and the Joint United Nations Programme on HIV/AIDS, in HIV/AIDS and Human Rights: International Guidelines. The guidelines reflecting the Syracusa principles acknowledge that states “may impose restrictions on some rights, in narrowly defined circumstances, if such restrictions are necessary to achieve overriding goods, such as public health [or to protect] the rights of others ... [and] the general welfare...”¹⁰² But for such restrictions to be justified they must be “proportional to [the] interest and constitute the least intrusive and least restrictive measure available...”, be carried out in accordance with the law, and be imposed in a way that is not arbitrary.¹⁰³ Unfortunately, the extremely limited reference to the issues raised by reporting in the Guidelines merely states: “Public health legislation should ensure that HIV and AIDS cases reported to public health authorities for epidemiological purposes are subject to strict rules of data protection and confidentiality.”¹⁰⁴ The reference is thus permissive with regard to reporting, stipulating the necessity of only the most limited and basic of protective conditions. Not confronted is the question of whether the use of names is justifiable or how trade-offs between epidemiological requirements and privacy concerns should be addressed.

More helpful is the observation of Gostin and colleagues in laying out the general principles that should guide the acquisition of data by public health authorities:

“Public health authorities must substantiate the need for a named identifier when collecting information. If they could achieve the public health good as well, or better, without personal identifiers, the collection of non-identifiable or aggregate data is preferable. These data collection principles recognize that government authority to acquire sensitive personal information ought to be justified by substantial public health good that cannot be achieved by means that are less invasive of individual privacy.” ¹⁰⁵

But even these guidelines simply make clear the factors that must be considered in coming to human rights-sensitive conclusions. They do not determine whether, under given circumstances, name-based reporting for AIDS/HIV can be justified.

Implicit in the International Guidelines, and more directly in Gostin’s discussion, is the necessity of answering a series of complex empirical questions as a precondition for human rights analyses: Does effective surveillance require the reporting of AIDS cases or instances of HIV infections? Can the goals of surveillance be achieved only by collection of names? What consequences will follow for the willingness of individuals to be tested for HIV, and to undergo counselling to enter care, if named rather than anonymous reporting is adopted? Do other public health functions such as voluntary partner notification, the assurance of adequate counselling and the provision of care, require the use of names? What level of inaccuracy will be produced by the use of coded versus named reports and how would that level of inaccuracy affect the purposes for which reporting was initiated? What mechanism exists for the protection of the confidentiality of reported names, if they are used, and what is known about its effectiveness? To these critical questions there are no definitive answers that are universally applicable. The answers appropriate in one nation at a given moment may not be appropriate in the same nation at a different time, or in other nations. Much depends on the state of the epidemic, the infrastructural capacity of the public health and medical systems, and the general political culture. In the face of uncertainty, dispute thrives.

How those committed to a human rights perspective can come to different conclusions about whether health care professionals should report the names of their patients to confidential public health registries is demonstrated by the following references to Canada, the United States, and South Africa.

A study prepared for the Canadian HIV/AIDS Legal Network and the Canadian AIDS Society by Ralf Jurgens, HIV Testing and Confidentiality: Final Report, was firm in its conviction that nominal reporting was not necessary for public health, and hence represented an unacceptable restriction on human rights: “To achieve the epidemiological objective of reporting, there are good reasons at this point in the epidemic to require reporting of cases of HIV seropositivity. HIV surveillance can allow us to develop a more accurate picture of the current epidemic and craft a more finely tuned response... However, neither the epidemiological objective of reporting nor the objective of public health measures such as partner notification require nominal reporting.”¹⁰⁶

In radical contrast, Gostin, who has played so central a role in the discussion of the human rights dimensions of the AIDS epidemic globally, has concluded that in the United States, given the state of the epidemic and the record of public health departments in protecting the names of those reported with communicable diseases generally, and AIDS more specifically, name reporting is crucial to public health.

Finally, as noted above, South African human rights advocates have found even in proposals for non-nominal reporting of AIDS an unacceptable intrusion on the rights of privacy.

It is useful to underline that no notification requirement would be justified from a human rights perspective if the registries to which individuals were reported were not protected by confidentiality regimes and were not secured against disclosure for purposes unrelated to public health, e.g. for purposes of unwarranted discrimination or deprivation of liberty. Public health registries must, from this perspective, be governed by “strict rules of data protection and confidentiality.”