Fact sheet - 2009 report (A/64/272), focusing on informed consent and the right to health

Summary, by Victor Maertens, IFHHRO intern

This report to the UN discusses the issue of the right to informed consent, focusing on the importance that at risk groups are granted the right to informed consent.

In this report to the UN, the Special Rapporteur outlines why accesses to informed consent before patients undergo a procedure is a pivotal element of the concept to the right to health. Informed consent is not only limited to the right to health but as the Special Rapporteur outlines in paragraph 19, that “Informed consent invokes several elements of human rights that are indivisible, interdependent and interrelated” (para. 19 A/64/272). The Special Rapporteur is making reference to rights such as, but not limited to; freedom from discrimination, right to self-determination, and freedom of thought, expression and reproductive self-determination. The need for informed consent is significant because it makes patients aware of the potential negative ramifications of their treatment and choices. The right to informed consent is outlined in several international treaties and organizations. Yet despite the existence of these rights, not all individuals have access to them. In certain cases risk groups, such as the elderly, sex workers, children, drug users and other vulnerable groups are denied their right to informed consent and have treatments forced upon them or are not fully aware of what is being done to them. Treatment without informed consent can also lead to less effective treatments, relapses, and discriminatory treatments. Health providers and health workers are tasked with the duty to provide patients with an adequate amount of information so that patients are capable of making informed decisions about their medical situation independently. The patients should be able to comprehend the risks and benefits of proposed treatments (paras. 18-26 A/64/272).

While it is understandable that no patient will fully understand complex medical procedures without years of training to match that of their physicians, the imbalance in the doctor-patient relationship can be slightly overcome leading to informed consent through the appropriate support mechanisms of the community and the health-care system. Once again, special care must be taken in order to ensure that vulnerable groups are also sufficiently informed. As these groups are particularly vulnerable, extra steps should be taken to ensure that these groups are adequately protected. A specific example would be the treatment of children by health-care providers. Non-emergency invasive and irreversible procedures on children should be if possible delayed to the point that the children are sufficiently mature in order to understand the impact of the procedure and make an informed decision, according to the Special Rapporteur. Despite the existence of laws, health workers must also be appropriately trained in order to avoid continued denial of services to adolescents without parental consent. The information provided by physicians regarding treatments should be attainable and understandable to the individuals of specific groups (paras. 47-50 A/64/272).

The significance of health-care providers is also demonstrated when dealing with the treatment of women. “Health-care providers are critical actors in ensuring that women are provided adequate information, especially information regarding reversible family planning options and personnel must be adequately trained and sensitized in this respect” (para. 59 A/64/272). This concept of responsibility is furthered when the following statement is considered as well, “Reproductive freedom should never be limited by individuals or states as a family planning method, HIV/AIDS prevention, or any other public health agenda” (para. 58 A/64/272). Thus health workers have a responsibility to provide the information to the people, not make the decisions or limit the decisions for the people (paras. 54-60 A/64/272).

Yet health workers are not the only ones who have a responsibility, the state, also a player in the health system, is an active participant in the field of health and human rights. As signatories of international legislation and agreements, they are responsible to uphold certain values and codes of conduct. An example of one of the states responsibilities is that “States must provide persons with disabilities equal recognition of legal capacity, care on the basis of informed consent, and protection against non-consensual experimentation” (para. 72 A/64/272).

An additional example regarding a vulnerable stigmatized group and health workers is the treatment of HIV/AIDS patients in clinical trials. As these patients are often the victims of stigmatization, they will be deterred from accessing appropriate services at times. They may be denied adequate information to give informed consent. “The lack of information and relative powerlessness of communities involved in HIV/AIDS clinical trails (especially when vulnerable groups are targeted further compromise informed consent” (para. 75 A/64/272). International guidelines place an emphasis on the need to protect HIV/AIDS patients in terms of sexual and reproductive health (paras. 75-78 A/64.272).

The two last example groups are the prison population and drug users. The prison population is already deprived of some of their liberties and they are “often subjected to violations of rights that go beyond the scope necessary for the purposes of confinement” (para. 79 A/64/272). These additional violations increase prisoner’s risks of mental illness and drug dependence. These prisoners’ rights “may not be limited beyond what is necessitated by the condition of incarcerations, including the right to health enjoyed by free persons” (para. 80 A/64/272). There are numerous examples in which prisoners are denied rights beyond the scope of their incarceration. Prisoners participating in HIV/AIDS research trails face the threat of stigmatization and discrimination due to a lack of confidentiality in prisons. Furthermore, individuals who take part in hunger strikes are often force-feed and restrained despite the fact that it has been prohibited in the international community under the World Medical Association Declaration of Tokyo (1975) and the Declaration of Malta (1991). Furthermore, there are cases of organs being harvested from executed prisoners without prior consent (paras. 79-84 A/64/272).

Drug users are at times forcibly admitted to drug dependence treatment due to the fact that they are perceived as being dangerous to themselves and unable to make the right decision. These treatments are generally ineffective, mainly because of relapses and demonization. This compulsory drug depended treatment is often associated with extended periods of isolation and detention without judicial oversight. Conditions in compulsory treatment centres at times present additional health threats as they are exposed to infectious diseases and are lacking in qualified staff capable of addressing emergencies or providing medically managed drug treatments. (paras. 88-90 A/64/272).