Public access to health information as a human right

Morbidity and Mortality Weekly Report, Dec, 1992

In this session, we will consider the problem of conducting epidemiologic surveilance with only limited resources. The speakers will discuss and analyze the fetures of such programs, including

* realistic planning of programs based on carefully selected priorities; and

* innovative approaches aimed at obtaining the maximum benefit from limited resources. Such innovations would be of interest not only to other resource-poor countries but could also find application in more affluent countries.

It is not my intention to anticipate the material others will present in this session. Rather, I would like to refer briefly to an additional important factor that limits the effectiveness of public health surveillance in developing countries. Public health planners must be concerned about the attitude of governments toward the surveillance process. They must continue to focus on the fact that success of epidemiologic surveillance programs depends, first and foremost, on the degree to which governments are committed to basing public health decisions on objective analysis of good data.

Government officials are often tempted to suppress information that may have unfavorable economic, commercial, or political impact. Familiar examples include the underreporting of cases of cholera, meningitis, and dengue because of the fear that such reports will adversely affect tourism and international trade. In their efforts to keep negative information from the outside world, governments must necessarily withhold the information from their own citizens; individuals and communities are thereby denied information that could help them avoid infection and disease. In their dealings with other nations and with multilateral agencies such as the World Health Organization (WHO), some governments affirm their sovereign right to control the flow of information about health conditions in their own countries. Ironically, in the process of asserting their sovereign right in such cases, these governments infringe upon the human rights of their own citizens.

Many governments regularly participate in this process of inaccurate reporting and denial of public health surveillance information. The world has paid and continues to pay a high price for this use of political power. A case in point was the response of some governments to the ongoing epidemic of human immunodeficiency virus (HIV) infection. In the early stages of the epidemic, officials in some countries made strenuous efforts to prevent the publication of epidemiologic data about HIV infection. They suppressed reports of epidemiologic surveys and restrained scientists from discussing their findings. This active suppression of information meant that individuals and communities remained unaware of the problem and could not take measures to protect themselves. Thus, this policy of concealment and denial almost certainly contributed to the high prevalence of HIV infection in some countries. One can argue that if governments had not actively suppressed information, it might have been possible in some countries to stem the rising tide of infection at an early stage of the epidemic.

Such problems are not peculiar to developing countries. Recent examples from developed countries include the political fallouts from statments about donated meat and "mad cow" disease and about Salmonella infections in eggs! Even if governments do not take extraordinary measures to suppress the dissemination of epidemiologic information, they are sometimes parsimonious with the truth, persuading health officials to observe discretion that borders on cover-up.

Such events illustrate the conflict between the sovereign rights of governments and the human rights of their citizens. Sovereign rights empower each government to protect its people from exploitation by external interests and to make decisions within its territory, without undue interference from other governments and from external agencies. At the same time, the human rights of the citizens should empower the people to have timely access to information that would enable them to protect their own health.

Access to public health information, including data collected from surveillance, should be regarded as a human right, at par with other such rights--freedom of speech, freedom of lawful assembly, and freedom from arbitrary arrest. Governments that infringe upon the right of access to health information should be held accountable by the world community in the same way they are for the infringement of other basic human rights. In appropriate cases, individual decision makers who suppress or deliberately distort surveillance information should be held personally responsible for the consequences of their actions.

The problem calls for action at two levels:

* At the international level, the issue of access to health information as a human right should be placed on the agenda of relevant organizations, e.g., WHO, United Nations Children's Fund, and the United Nations. Debates and discussions in these assemblies should lead to a consensus about the right of people to know what is going on in their health environment. Wise decisions that derive from such discussions should increase the level of sensitivity of government policymakers throughout the world with regard to surveillance.