Draft Article 6
STATISTICS AND DATA COLLECTION²³

In order to formulate and implement appropriate policies to protect and promote the rights of persons with disabilities, States Parties should encourage the collection, analysis, and codification of statistics and information on disabilities and on the effective enjoyment of human rights by persons with disabilities. The process of collecting and maintaining this information should:

• respect the right to privacy, the dignity and the rights of persons with disabilities, and the information collected from persons with disabilities should be on a voluntary basis;
• be kept only in a statistical format without identifying individuals and should be kept secure to prevent unauthorised access or misuse of information;
• ensure that the design and implementation of data collection is done in partnership with persons with disabilities, their representative organisations and all other relevant stakeholders;
• be disaggregated according to the purpose of the collection of information and should include age, sex and type of disability;
• include detailed information on their access to public services, rehabilitation programs, education, housing and employment;
• adhere to established ethics regarding respect for anonymity and confidentiality in the collection of statistics and data.

Footnotes:

23: There were differing views within the Working Group regarding the inclusion of this draft Article. Some delegations strongly supported the inclusion of an article on statistics and data collection in the text of the convention for several reasons. Data collection is recommended in Rule 13 of the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. Its inclusion could allow States to respond more effectively to the needs of persons with disabilities and to have an accurate assessment of the situation of the persons concerned so as to implement programs for their benefit. General Assembly Resolution 58/132 of 22 December 2003, in paragraph 8, also deals with the issue of data and statistics. In the present draft Article, the respect for the right to privacy is fundamental.

Other delegations opposed the inclusion of an article on statistics and data collection in the convention, for several reasons. They expressed a concern for the respect of the right to privacy and the risk of misusing the information, and considered that such an article did not belong in a human rights treaty. They considered that statistics were not useful as a policy tool, and that resources spent in data collection should be used instead in programs for persons with disabilities. There should be a mainstreaming of surveys and not just surveys for persons with disabilities.

Other delegations suggested that the draft article should be re-titled. One suggestion was "Collection and Protection of Statistics and Data". It was clearly considered that any data collected on disabilities must not infringe on the human rights of persons with disabilities.

Relevant references:

Disability-specific instruments

Jurisprudence of human rights treaty bodies

Other documents

Summary of discussions at the Working Group

Comments on the draft text

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