Table 3: Patient Care and the Right to Information

Examples of Human Rights Violations

  • A state fails to provide information on various health care services. For instance, rape victims are entitled to obtain post-exposure prophylaxis to prevent HIV infection, but very few are aware of this option.
  • Hospitals fail to provide information on patient satisfaction, clinical performance, and waiting lists.
  • Physicians fail to comprehensively explain to patients the facts related to their condition.
  • Physicians fail to provide patients with information about treatment options and the potential risks and benefits of each procedure.
  • Patients are denied access to their medical files.
  • Information services are unavailable for people who speak certain languages or who are deaf or blind.
Human Rights Standards Treaty Body Interpretation
ICESCR 12(1) The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. CESCR General Comment No. 14 (12): Halth care accessibility “includes the right to seek, receive and impart information and ideas concerning health issues.”
CEDAW 10 States Parties shall take all appropriate measures to eliminate discrimination against women in order to ensure to them equal rights with men in the field of education and in particular to ensure, on a basis of equality of men and women:(h) Access to specific educational information to help to ensure the health and well-being of families, including information and advice on family planning.

CEDAW 16(1) States Parties shall take all appropriate measures to eliminate discrimination against women in all matters relating to marriage and family relations and in particular shall ensure, on a basis of equality of men and women:(e) The same rights to decide freely and responsibly on the number and spacing of their children and to have access to the information, education and means to enable them to exercise these rights.

CEDAW [Jurisprudence]: The petitioner was sterilized during a Caesarean section to remove a dead fetus. She signed the consent form while on the surgical table, in shock and without understanding of what sterilization meant. She argued that Hungary violated CEDAW 10(h) and 16(1)(e) because she had not received “specific information about the sterilization, the effects of the operation on her ability to reproduce, or advice on family planning and contraceptive measures — either immediately before the operation or in the months/years before the operation was carried out. She claims that she was not given information about the nature of the operation, the risks and consequences, in a way that was comprehensible to her before she was asked to sign the consent form.” The Committee reasoned that “the author has a right protected by article 10(h) of the Convention to specific information on sterilization and alternative procedures for family planning in order to guard against such an intervention being carried out without her having made a fully informed choice. Furthermore, the Committee notes the description given of the author’s state of health on arrival at the hospital and observes that any counselling that she received must have been given under stressful and most inappropriate conditions. Considering all these factors, the Committee finds a failure of the State party, through the hospital personnel, to provide appropriate information and advice on family planning, which constitutes a violation of the author’s right under article 10 (h) of the Convention.” A.S. v. Hungary, Communication No. 4/2004, CEDAW/C/36/D/4/2004.
Human Rights Standards Case Law
ECHR 8(2). There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others. ECtHR: The applicants, eight women of Roma origin, could not conceive any longer after being treated at gynaecological departments in two different hospitals. They suspected that it was because they had been sterilised during their stay in those hospitals. The hospitals refused to release their medical records to their authorised legal representative or to allow them to obtain a photocopy of the documents. The women then obtained judicial orders permitting them to consult the records under the Health Care Act 1994, but were not allowed to make photocopies. The Court found that this violated Art. 8. Since this case was filed, the Health Care Act 2004 now explicitly provides for patients or persons authorised by them to make copies of medical records. K.H. and Others v. Slovakia, 32881/04 (April 28, 2009)ECtHR: The applicant, a serviceman, complained about inadequate access to information about the tests performed on him at a defense establishment. The defense establishment conducted research into chemical weapons for the UK’s armed forces, including tests of gases on humans and animals. The Court found that “the State has not fulfilled the positive obligation to provide an effective and accessible procedure enabling the applicant to have access to all relevant and appropriate information that would allow him to assess any risk to which he had been exposed during his participation in the tests.” Roche v. United Kingdom, 32555/96 (October 19, 2005).

Other Interpretations 

Declaration of Lisbon on the Rights of the Patient, Principle 7: Right to Information.

a. The patient has the right to receive information about himself/herself recorded in any of his/her medical records, and
to be fully informed about his/her health status including the medical facts about his/her condition. However, confidential information in the patient’s records about a third party should not be given to the patient without the consent of that third party.

b. Exceptionally, information may be withheld from the patient when there is good reason to believe that this information would create a serious hazard to his/her life or health.

c. Information should be given in a way appropriate to the patient’s culture and in such a way that the patient can understand.

d. The patient has the right not to be informed on his/her explicit request, unless required for the protection of another person’s life.

e. The patient has the right to choose who, if anyone, should be informed on his/her behalf.

Declaration on the Promotion of Patients’ Rights in Europe:

Art. 2.2: Patients have the right to be fully informed about their health status, including the medical facts about their conditions; about the proposed medical procedures, together with potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis, and progress of treatment.

Art. 2.6: Patients have the right to choose who, if any one, should be informed on their behalf.

European Convention on Human Rights and Biomedicine, Art. 10(2): Everyone is entitled to know any information collected about his or her health. See also Explanatory Report, paras. 65-70 (interpreting the right to private life and right to information).

European Charter of Patients’ Rights, Art. 3: Every individual has the right to access to all kind of information regarding their state of health, the health services and how to use them, and all that scientific research and technological innovation makes available.