Article 21 Health- Informed Consent
Prepared by the International Disability Caucus
The Working Group text for article 21 deals with informed consent in paragraphs (j) and (k):-
Ensure that health and rehabilitation services provided to persons with disabilities, and the sharing of their personal health or rehabilitation information, occur only after the person concerned has given their free and informed consent, and that health and rehabilitation professionals inform persons with disabilities of their relevant rights;
Prevent unwanted medical and related interventions and corrective surgeries from being imposed on persons with disabilities.
A footnote in the Working Group text suggested a definition for informed consent:- “Informed decisions can be made only with knowledge of the purpose and nature, the consequences, and the risks of the treatment and rehabilitation supplied in plain language and other accessible formats”.
1. Informed consent is an aspect of the right to health:- The right to the highest attainable standard of health (art. 12 ICESCR) states:-
The right to health contains both freedoms and entitlements. The freedoms include the right to control one’s health and body, including sexual and reproductive freedom, and the right to be free from interference, such as the right to be free from torture, non-consensual medical treatment and experimentation.
Thus, health is not a public good to be pursued independent of the will of each individual, but requires respect for the will of the individual person with respect to his or her own well-being. This is reinforced by the requirement that health services be culturally acceptable to individuals and communities
2. Informed consent must be guaranteed to persons with disabilities on an equal basis with others.. prohibits discrimination in the exercise and enjoyment of the right to health, including on the ground of disability. The freedoms contained in the right to health, as well as the entitlements, are subject to non-discrimination.
The General Comment unfortunately perpetuates discrimination based on disability, by permitting exceptions to be made to the obligation to refrain from coercive medical practices, in the context of “treatment of mental illness or the prevention and control of communicable diseases” such as HIV/AIDS. Such exceptions fail to respect the rights and dignity of persons with psychosocial disabilities and persons living with HIV/AIDS and should not be repeated in this Convention.
Self-determination of persons with disabilities as starting point for informed consent:-
The proposed Supplement to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, addressing the failure of governments to respect the autonomy of persons with disabilities on an equal basis with others, provides as follows:-
States should recognize that persons with disabilities have the same right to self-determination as other citizens, including the right to accept or refuse treatment. … States should also ensure that medical facilities and personnel inform people with disabilities of their right to self-determination, including the requirement of informed consent, the right to refuse treatment and the right not to comply with forced admission to institutional facilities. States should also prevent unwanted medical and related interventions and/or corrective surgeries from being imposed on persons with disabilities.
The Supplement was developed by the Special Rapporteur on Disability in consultation with a panel of experts formed by international disability organizations, as part of mandated activity to monitor the Standard Rules. These provisions enjoy the support of the disability community and should be considered as a best practice in the establishment of human rights standards. Any exceptions or limitations to the exercise of informed consent by persons with disabilities will be a step backwards.
Legal capacity (capacity to act) underlies the right to informed consent:-
Legal capacity (capacity to act) is a necessary prerequisite for exercise of the right of informed consent by any individual. Without legal capacity, a person remains vulnerable to decisions by other people that may be unacceptable to the individual, and to a process of decision-making that disrespects self-determination and human dignity. In the health context, persons with disabilities face increased vulnerability to unacceptable services due to prejudice about our capabilities, needs, and worth as human beings. For this reason a recognition of legal capacity on an equal basis with others, with supported decision-making as an entitlement that must not undermine legal capacity, is necessary to ensure that informed consent is meaningful for all people with disabilities.
Article 9 addresses legal capacity as a transversal matter in the Convention, relevant to exercise of all rights and freedoms. In article 21, it is sufficient to establish a right to informed consent, without any exceptions or limitations, and leave the resolution of legal capacity to article 9.
5. Access to information
The provision of all health related information is to be timely, meaningful and accessible formats, modes, means and language, including sign language. This is crucially important for people with sensory, intellectual and other disabilities.
The extent to which this provision is implemented will directly determine the extent to which people with sensory, intellectual and other disabilities will be able to –
* access affordable health care without discrimination, clause 2(a);
* access the same range and standards of health services as others, clause 2(b);
* give informed consent to treatment, clause 2(e);
* access their health and medical records, clause 2(f);
* select treatment options, clause 2(g);
* access information to maximise personal health, clause 2(l).
“Informed decisions can be made only with knowledge of the purpose and nature, the consequences, and the risks of the treatment and rehabilitation supplied in plain language and other accessible formats”.’