Ethical and Legal Problems of HIV Infection (A Socio-Epidemiological Study Based on the Materials of the Republic of Tatarstan)

The dissertation by M.V. Makarova is devoted to a comprehensive socio-epidemiological and ethical-legal investigation of the problem of HIV infection based on the materials of the Republic of Tatarstan. The work analyzes the epidemiological situation of HIV infection in the region for the period of 1998–2002, including the dynamics of the main indicators, the age structure of morbidity, vertical transmission of the virus, and the social status of infected persons. Special attention is given to the ethical-legal aspects of medical care for people living with HIV, from the perspectives of both the patients themselves and medical workers, including medical university students. The research is aimed at developing recommendations for improving preventive measures and enhancing the quality of medical care for patients with HIV infection, taking into account regional specifics and contemporary ethical-legal challenges.

Relevance of the Topic. The modern pandemic of an infectious disease caused by the human immunodeficiency virus (HIV) can be fully regarded as the most tragic event of the twentieth century, standing in the same row as world wars. At present, the number of HIV-infected people in the Russian Federation has reached critical figures, and, in essence, a threat to the national security of the country has arisen [33,41].

The infection, which appeared just over twenty years ago as a disease of certain social groups and, seemingly, barely affecting the general population, has today transformed into a global crisis, denoting in many countries an entire spectrum of social, economic, medical, legal, moral-ethical, and other problems. This is the distinctive feature of the HIV infection epidemic, and the practice of the first decades of combating it has shown that only a comprehensive approach to their resolution is constructive.

The epidemic develops according to its own "laws." The constantly growing number of infected persons, the gradual involvement of various age and social groups in the epidemic process, and the diversity of routes of infection transmission require constant changes in the strategy for combating it. Moreover, the development of the epidemic in Russia coincided in time with gigantic social and political transformations. The democratization of society, the liberalization of views on a whole range of social phenomena, the development of the "legal field" in Russia, and so on form the modern specificity of this, on the whole, global process.

The time has already passed when, in the opinion of the absolute majority of the country, HIV-infected persons were unambiguously perceived as a small group of outcasts and asocial individuals. By today, these people constitute a considerable part of modern Russian society. Unfortunately, in the modern world (including in Russia), violations of the rights of HIV-infected persons are a frequent phenomenon. According to the opinion of the majority of researchers, the causes of the emergence of such situations are several: these include the "legal illiteracy" of the population, entrenched stereotypes, ignorance, and consequently unjustified fear of infection, and so on. All this becomes the "nurturing medium" for the discrimination of these persons. However, by now, society is maturing an understanding that "stigma" and discrimination of the infected in the context of this disease constitute a real obstacle to the prevention and treatment of HIV infection.

On the other hand, with the growth of the epidemic in the country, an ever-increasing number of medical workers are being involved in the process of serving HIV-infected persons. The ethical and legal component is becoming at the same time an equally important and integral part of their work as professional knowledge in the field of diagnosis and treatment of the disease. Moreover, it is precisely the HIV infection epidemic that has most acutely "highlighted" such a problem of healthcare as the observance and protection of the rights of the medical worker.

Taking into account the clearly expressed territorial, ethnic, religious, economic, social, and other features of the Russian Federation (RF), it is advisable to evaluate and utilize in the organization of medical care the regional specifics of the epidemiology of HIV infection. Furthermore, as has shown the analysis of domestic literary sources, in our country, taking into account its features and the mentality of the population, the ethical-legal component of the AIDS problem has been studied to an extremely small extent.

In the present research, we set the following goal: on the basis of studying the ethical-legal problems and modern epidemiological features of HIV infection in the Republic of Tatarstan, to develop proposals for improving the quality of preventive measures and medical care for patients.

To achieve the goal, it was necessary to solve the following tasks:

1. To study the modern epidemiological features of HIV infection in the Republic of Tatarstan.

2. To evaluate the ethical-legal aspects of medical care from the perspective of the HIV-infected patient and the level of his legal literacy.

3. To characterize the ethical-legal knowledge and views of medical workers and medical university students on the problem of HIV infection.

4. To develop recommendations for optimizing medical care for HIV-infected persons and improving the training of specialists on ethical-legal problems of AIDS.

The scientific novelty of the research lies in the fact that in it, for the first time:

- the modern features of the HIV infection epidemic in the Republic of Tatarstan have been identified;

- the views of HIV-infected persons on the ethical-legal component of their medical care have been established, and their level of legal literacy has been evaluated;

- the level of ethical-legal knowledge and the attitude toward HIV-infected patients among senior-year medical students have been assessed;

- a characterization of the legal knowledge of medical workers and the ethics of relationships in the systems "physician — HIV-infected person" and "nurse — HIV-infected person" has been presented;

- recommendations for improving medical care for HIV-infected persons have been proposed.

Theoretical and Practical Significance. A scientific substantiation of the criteria for evaluating the epidemiological situation of HIV infection in a separate region of the Russian Federation has been provided. The results of the socio-epidemiological research made it possible to develop recommendations for improving medical care for HIV-infected persons, taking into account modern epidemiological features and ethical-legal problems arising in the process of rendering medical assistance. They can be used in improving the educational process in biomedicine and medical law at the pre- and postgraduate levels. The main provisions and conclusions of the work can be used in the development of a targeted regional program for the prevention of HIV infection.

Implementation of the Research Results. The results of the dissertation research have been introduced into the work of the Centers for Prevention and Control of AIDS and Infectious Diseases of the Ministry of Health of the Republic of Tatarstan and healthcare institutions of the republic, and are used in the educational process of the departments of epidemiology, pediatric infectious diseases, public health and healthcare organization with a course of medical informatics, biomedical ethics, and medical law at Kazan State Medical University.

The results of the research were used in the preparation of the following documents:

• Order of the Ministry of Health of the RT, TsGSEN in the RT, MVD of the RT, UIN of the Ministry of Justice of the RF for the RT dated 24.05.2002 No. 440/93/243/122 "On the Organization of a Unified Epidemiological Monitoring of the Spread of HIV Infection in the Republic of Tatarstan";

• Resolution of the Cabinet of Ministers of the RT dated 19.11.2001 No. 817 "On the Approval of Republican Measures to Stabilize the Level of Growth and Spread in the Republic of Tatarstan of the Disease Caused by the Human Immunodeficiency Virus (HIV Infection) for 2002–2003 (ANTI/HIV/AIDS)";

• Order of the Ministry of Health of the RT No. 331 dated 31.03.2003 "On Measures to Improve Drug Supply for Patients with HIV Infection Residing in the Republic of Tatarstan".

Based on the materials of the research, the following educational-methodical manual has been published: "Problems of STIs in the Russian Federation: A Review of Domestic and Foreign Press" for students of medical universities and residents, Kazan, KGMU, 2002, 98 pp.

Validation of the Work. The main provisions of the dissertation were reported and discussed at:

The International Conference "HIV/AIDS and Related Problems" (Saint Petersburg, 1998); a working meeting of chief physicians of Centers for Prevention and Control of AIDS of the Ministry of Health of the RF "Prevention of Mother-to-Child Transmission of HIV. Problems and Solutions" (Saint Petersburg, 2002);

The All-Russian Scientific and Practical Conference "Microecology of Mother and Child. Principles of Diagnosis and Treatment" (Kazan, 2002); at the Interregional Scientific and Practical Conference "Current Issues of Epidemiology, Clinical Features, Diagnosis, Treatment, and Prevention of HIV Infection/AIDS in the Volga Federal District" (Izhevsk, 2003);

The International Conference "Drug Addiction and Medical-Social Consequences. Strategies for Prevention and Therapy" (Kazan, 2003).

Publications. Fifteen printed works have been published on the topic of the dissertation.

Propositions to be Defended:

1. The epidemiological situation of HIV infection in the Republic of Tatarstan over the last three years has acquired the features of a generalized stage of the epidemic with the formation of a number of characteristic features.

2. The identified modern features of the HIV infection epidemic in the Republic of Tatarstan predetermine a new format of social, ethical-legal, and organizational measures in the sphere of prevention and treatment of HIV infection.

3. HIV-infected patients are burdened with a load of ethical-legal problems. In the system "medical worker — HIV-infected patient," positions of a paternalistic model of relationships are preserved.

4. The level of ethical-legal knowledge of medical students and medical workers requires improvement.

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