Table 11: TB and Freedom of Expression and the Right to Information

Examples of Human Rights Violations

  • People who are illiterate may have less knowledge of TB and its signs and symptoms
  • Health care workers fail to give adequate information to patients on the importance of adhering to TB medicine and the possible side effects
Human Rights Standards Treaty Body Interpretation
ICCPR 19(1) Everyone shall have the right to hold opinions without interference. (2) Everyone shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of his choice. None.

Other Interpretations 

WHO Guidance on ethics of tuberculosis prevention, care and control (WHO, 2010):

Information, counselling and the role of consent. Individuals who undergo TB testing should receive basic information about the nature of TB and why they are being tested. Individuals who are offered TB treatment should be given information about the risks and benefits of the proposed interventions (for both the patient and others in the community), the importance of completing the full course of treatment and of infection control measures, and available support to help patients complete the full course of treatment.

The gap between the availability of drug susceptibility testing and access to M/XDR-TB treatment. For countries that are still scaling up their capacity to supply rapid drug susceptibility testing, decisions about how to treat patients should be made on an individualized basis, taking into account both the local epidemiology and patient-specific factors. These decisions should ideally be made in a consultative process, involving multiple practitioners and, when available, a patient advocate. Education and counselling should be offered to patients.

Resolution WHA 62.15, Prevention and control of multidrug-resistant tuberculosis and extensively drug-resistant tuberculosis (WHO, 2009):

Para. 1(j). Undertake “effective advocacy, communication and social mobilization, avoiding stigmatization and discrimination, and spreading community awareness about policies and plans for prevention and control of tuberculosis including [MDR- and XDR-TB]”. Resolution WHA 62.15.

WHO Policy Guidelines for Collaborative TB and HIV Services for Injecting and Other Drug Users (WHO, 2008):

Recommendation 6. All services dealing with drug users should have a case-finding protocol for TB and HIV so that personnel are aware of the symptoms of TB and HIV and can ensure that drug users have access to appropriate TB and HIV testing and counselling, preferably at the service where they initially present.

Recommendation 9. All personnel working with TB suspects and patients, people living with HIV and drug users should be able to assess risk factors for HIV infection and transmission and should provide comprehensive HIV prevention information and services to their clients to minimize these risks. Personnel should also be aware of how to protect themselves from occupational exposure to HIV and TB.

Patients’ Charter for Tuberculosis Care (World Care Council, 2006):

Care. The right to benefit from proactive health sector community outreach, education, and prevention campaigns as part of comprehensive care programs.

Choice. The right to a second medical opinion, with access to previous medical records. The right to accept or refuse surgical interventions if chemotherapy is possible and to be informed of the likely medical and statutory consequences within the context of a communicable disease. The right to choose whether or not to take part in research programs without compromising care.

Information. The right to information about what healthcare services are available for tuberculosis and what responsibilities, engagements, and direct or indirect costs are involved. The right to receive a timely, concise, and clear description of the medical condition, with diagnosis, prognosis (an opinion as to the likely future course of the illness), and treatment proposed, with communication of common risks and appropriate alternatives. The right to know the names and dosages of any medication or intervention to be prescribed, its normal actions and potential side-effects, and its possible impact on other conditions or treatments. The right of access to medical information which relates to the patient’s condition and treatment and to a copy of the medical record if requested by the patient or a person authorized by the patient. The right to meet, share experiences with peers and other patients and to voluntary counseling at any time from diagnosis through treatment completion.

International Standards for Tuberculosis Care (Tuberculosis Coalition for Technical Assistance, 2006):

Standard 9. To foster and assess adherence, a patient-centered approach to administration of drug treatment, based on the patient’s needs and mutual respect between the patient and the provider, should be developed for all patients. Supervision and support should be gender-sensitive and age-specific and should draw on the full range of recommended interventions and available support services, including patient counseling and education….