Research, both clinical and non-clinical, is critical to our understanding of HIV and of how to respond effectively in the areas of prevention and treatment. Given the scale of the global epidemic, finding effective means of preventing further infections is essential to eventually halting and reversing it; finding effective, sustainable means of treating those with HIV is essential to avoiding enormous loss of life and human suffering, and all of the additional social and economic costs associated with such loss.
In all research, and particularly in biomedical and social science research that poses risks of harm to participants, there is a need to ensure effective protection of participants’ human rights. As recommended by the International Guidelines on HIV/AIDS and Human Rights, states should enact protective laws governing the legal and ethical protection of participants in research. This includes ensuring the non-discriminatory selection of participants, the protection of participants’ confidentiality, and the provision of counselling, protection from discrimination and health and support services provided during and after participation in research, as well as the meaningful involvement of affected communities in the research process. Participants’ right to give informed consent is particularly central to clinical trials and other HIV research. This right arises from various sources, including the rights to privacy, security of the person and not to be subjected involuntarily to medical experimentation recognized in the International Covenant on Civil and Political Rights. Stigma may also keep people from participating in HIV/AIDS research, including clinical trials of HIV medicines, vaccines and microbicides. If it is clear that such trials include human rights protections and involve affected people in decision-making, people will be more likely to participate in such research. There are numerous international and domestic conventions, declarations, guidelines and codes on ensuring that clinical trials and other research is conducted ethically and with respect for human rights (e.g., UNAIDS’ 2000 guidance document, Ethical considerations in HIV preventive vaccine research).
In addition, there is a human rights obligation to ensure equitable access to information and benefits that arise from research, be it new antiretroviral treatments or new prevention technologies such as microbicides or vaccines, or new knowledge about how social, structural factors fuel the epidemic or impede access to services. The International Covenant on Economic, Social and Cultural Rights recognizes that everyone has the right “to enjoy the benefits of scientific progress and its applications”. When accessible, antiretroviral medications and treatments for various opportunistic infections affecting people living with HIV have dramatically transformed the course and consequences of HIV disease. Vaccines have been demonstrated to be highly effective in preventing diseases, and there is good reason to believe that a vaccine against HIV would be a very important part of preventing and fighting HIV/AIDS. Similarly, the development of effective HIV microbicides would make a major contribution to preventing the spread of the virus. Such HIV prevention methods are of particular importance in empowering those — particularly women and sexual minorities in many settings — who are limited in their ability to insist that their sexual partners take HIV prevention measures such as condom use or other safer sex practices. Therefore, as part of guaranteeing people’s right to the highest attainable standard of health, as also recognized in the International Covenant on Economic, Social and Cultural Rights, governments should, according to the resources at their disposal, take steps to ensure the availability of HIV vaccines, microbicides and treatments to all people once they are proven effective. Governments should also contribute to the development of these health goods, within their available resources, including through support for research.