Access to Public Information
Company Doe v. Public Citizen
Closed Expands Expression
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In a landmark decision handed down in 2016, the Inter-American Court of Human Rights held Bolivia responsible for the forced sterilization of a Peruvian refugee, I.V., and recognized the importance of personal autonomy as a constitutive element of personality. I.V. fled her native Peru and was granted refugee status in Bolivia in 1993. In 2000, due to pregnancy complications she was hospitalized and had her Fallopian tubes tied without giving consent. The Court found Bolivia internationally responsible for the violation of the rights to personal integrity, personal freedom, dignity, private and family life, access to information and founding a family.
Ms. I.V. was born in Peru. While living in Peru she was detained by the Counter-Terrorist Directorate, a branch of the National Police of Peru in two separate occasions. While in custody, she was physically, psychologically, and sexually assaulted. She had two daughters in Peru, and in 1993 she fled to La Paz, Bolivia, where she and her family were granted refuge.
On July, 2000, I.V. went to the emergency room of the Women’s Hospital in La Paz after her water broke, and she received a caesarean section. During the procedure, complications arose due to multiple adhesions in the lower segment of her uterus. The following morning, the doctor informed I.V. that her Fallopian tubes had been tied and that she would not be able to have children again. According to I.V. the tubal ligation was performed without her prior and informed consent. Later that year, I.V. submitted a series of complaints before the relevant medical regulatory bodies, where the doctor argued that he obtained I.V.’s verbal consent during the trans-operative period, while I.V. was under epidural anesthesia.
The Inter-American Court, upon hearing the case, declared the State of Bolivia internationally responsible for the violation of the rights to personal integrity, personal freedom, dignity, private and family life, access to information and founding a family, recognized in Articles 5.1 (Right to Humane Treatment), 7.1 (Right to Personal Liberty), 11.1 and 11.2 (Right to Privacy), 13.1 (Freedom of Expression) and 17.2 (Rights of the Family) of the American Convention, to the detriment of Ms. I.V.
The Court had to decide whether the tying of the Fallopian tubes of Mrs. I.V. in Bolivia by a public employee at a state hospital was contrary to the international obligations of the State. In other words, if that procedure was carried out after obtaining the informed consent of the patient, under the parameters established in international law for this type of medical actions at the time of the events.
First, the Court indicated that Article 11 of the American Convention protects people’s dignity. It stated that a “central aspect of the recognition of dignity constitutes the possibility of every human being to self-determine and freely choose the options and circumstances that give meaning to their existence, according to their own options and convictions.” [para. 150] In this sense, the Court indicated that, according to a broad interpretation of the concept of liberty established in Article 7 of the American Convention, it includes the “right of every person to organize, in accordance with the law, their individual and social life, according to their own options and convictions. Liberty, defined in this way, is a basic human right, characteristic of the person’s attributes.” [para. 151] Moreover, the Court indicated that the protection of the right to a private life is not limited to the right to privacy. This right encompasses several factors related to the dignity of the individual, including, among others, “the ability to develop their own personality and aspirations, determine their own identity and define their own personal relationships.” The effective exercise of the right to privacy is essential in order to have the possibility of exercising personal autonomy over the “future course of events relevant to the quality of life of the person […]In addition, the Court [recalled] that choices and decisions regarding maternity are an essential part of the free development of women’s personality. Therefore, the decision to be or not to be a mother or father belongs to the sphere of the autonomous decisions of individuals regarding their private and family life.”[Para. 152]
The Court reiterated that according to its jurisprudence, there is an intrinsic link between the rights to private life and personal integrity with the right to health, and that the lack of adequate medical care can lead to the violation of Article 5.1 (right to life) of the ACHR [p.154 ]. For the Court, health as an integral part of the right to personal integrity, encompasses both access to health services without discrimination, as well as the freedom of each person to control their health and body and the right not to suffer interference (i.e. not be subjected to torture or non-consensual medical treatments and experiments).
In this regard, the Court indicated that there is a link between physical and psychological integrity with personal autonomy and the freedom to make decisions about one’s own body and health. This link requires: i) “that the State ensures and respects decisions and choices made freely and responsibly”; ii) “that access to relevant information be guaranteed so that people are able to make informed decisions about the course of action regarding their body and health according to their own life plan” [para. 155].
The Court recalled that Article 13 of the ACHR includes the right to seek, receive and disseminate information and ideas of all kinds, which protects the right to access information, including information related to people’s health. Specifically, the Court stressed that “The right of individuals to obtain information is complemented by a correlative positive obligation of the State to provide it, so that the person can have access to it and assess it. In this sense, health personnel should not wait for the patient to request information or ask questions regarding their health, in order to provide the information. The obligation of the State to provide ex officio information, known as the “obligation of active transparency,” imposes a duty on the States to provide information that is necessary for people to exercise other rights. This is particularly relevant in terms of health care, since this contributes to the accessibility of health services and that people can make free and well-informed decisions. Consequently, the right of access to information becomes instrumental to achieve the satisfaction of other Conventional rights” [para. 156].
Sexual and reproductive health constitutes an expression of health. On the one hand, it relates to autonomy and reproductive freedom (the right to make free and autonomous decisions about your life plan, your body and your sexual and reproductive health). On the other hand, it refers to access to both reproductive health services and to information, education and the means that allow them to exercise their right to decide freely and responsibly how many children they wish to have and the interval of births. In this way, the Court considered that the States have a duty to guarantee the right to information on health issues, and that it denial can become a barrier to fully exercise this right and may become an obstacle for making decisions freely. The Court understood that “the informed consent of the patient is a sine qua non condition for the medical intervention, which is based on respect for the patient’s personal autonomy and freedom to choose her life plans without interference. In other words, informed consent ensures the useful effect of the norm that recognizes autonomy as an indissoluble element of the dignity of the person.” [para.158]
For the Court, informed consent is not only an ethical but also a legal obligation of health personnel [para. 163]. The Court extensively addressed how the international community has treated and developed informed consent. In this way it recapped the elements of this right:
The Court analyzed whether the informed consent should be given in a verbal or written manner. In this regard, it indicated that although there is no consensus at international level or derived from the internal regulations of the States, the proof of the existence of consent must be formally documented or recorded in some instrument. This will depend on each case and situation. For the Court, in cases of female sterilization, due to the relevance and implications of the decision and for purposes of greater legal certainty, consent should be given in writing, to the extent possible [para. 196].
In the instant case, the Court stated that although there is a debate about the factual circumstances of the case, the legal consequence of both hypotheses is the same. That is, both in the case of the absence of a consent, and in the case of obtaining a verbal consent during the Ms. I.V. intraoperative period, the doctor breached his duty to obtain a prior, free, full and informed consent, as required by the American Convention. In conclusion, the Court declared Bolivia internationally responsible for the Bolivia internationally responsible for the violation of the rights to personal integrity, personal freedom, dignity, private and family life, access to information and founding a family.
Decision Direction indicates whether the decision expands or contracts expression based on an analysis of the case.
This the very first time the Inter-American Court of Human Rights analysed the foundations of the right to informed consent. For the Court, the informed consent rule is associated with the right of access to information in the field of health, because a patient can only give their informed consent if they have received and understood sufficient information that enables them to make a full decision.
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