Daily Summary related to Draft Article 6
Volume 3, #8
STATISTICS AND DATA COLLECTION
The Coordinator noted that there was no agreement reached on this issue. Colombia, which facilitated the elaboration of this text, endeavored to reflect the different views and sides of the debate in the footnotes, which are obviously an integral part of the document.
Ireland asserted that his delegation’s fundamental reservations persist in relation to this text.
LSN expressed support for the inclusion of a provision on statistics and data collection and went on to suggest the following two changes. Firstly, the wording in sub-paragraph 2 does not adequately convey the objective of engaging in statistics and data collection. Statistics and data are important tools in the formulation and implementation of appropriate programs and policies to promote and protect the rights of persons with disabilities. This concept is captured in the introductory paragraph but needs to be better incorporated in sub-paragraph 2. Second, on a related issue, the provision should make clear that the information referenced in sub-paragraph 5 should be gathered to provide information on PWD actual enjoyment of their rights as articulated in this convention.
WNUSP expressed regret that it was not able to directly input in the small group discussion. The representative expressed concerns related to privacy and the possible use of such statistics. WNUSP read out language in the article stipulating that the information collected should “protect the right to privacy…” This should be amended to reflect that it is in the collection and the maintenance of this information that the right to privacy is most at risk and needs protection. It may be necessary to have specific mention of the rights of that are to be protected. The article also indicates that information on PWD “be collected in close collaboration with all stakeholders in contact with PWD.” WNUSP noted that it considers PWD are the primary stakeholders in all of the issues “affecting us.” Problems may arise in collecting information through people who may have conflicting interests to the PWD themselves, such as members of the family or medical professionals. If the intent is that PWD have the opportunity to be notified that there is data collection going on, then the language needs to be clarified. Information collected should be used only for statistical purposes. As such, the data should be kept only in a statistical form, not in a manner that would identify particular individuals. The information should be used on the general policy-making level.
The Coordinator asked that delegations with strong views examine the
footnotes to determine if their concerns are expressed there. If not,
delegations should bring their opinions to Colombia.
Volume 3, #9
STATISTICS AND DATA COLLECTION
Sierra Leone stated that it had no problem with content of the text, especially with inclusion of the footnote. The word “should” should be changed to “shall” to be consistent with other articles. It is important to note that this issue is not just about data colletction but also usage of data, thus the process of data collection and then its usage should be clearly separated in the text. Also, the chapeau should reflect that States collect data on a voluntary basis.
Korea urged caution to ensure that these requirements do not conflict with national policies. There have been constitutional challenges regarding collection of data (regarding privacy), which could create problems if the convention obliges States to undertake activities that have been found to be unconsitutional in their countries.
India supported the need for statistics and data collection and its inclusion in the convention. Without the data, it is impossible to provide the necessary services, programs and support to PWD. Data needs to be collected in a professional and sensitive manner.
WFDB noted that in Denmark, it is forbidden to collect data around disabilities, in terms of identifying who is deafblind, etc. This text says that “States should encourage…”, not that States should undertake data collection themselves. They could ask NGOs to do it and it should be done on a voluntary basis, as is reflected in the Standard Rules.
Sweden stated that it had many reservations on this subject. In particular, Sweden expressed concern about the assertion in paragraph 2 of the footnote that “Some members strongly support inclusion of this article…” Although there may have been view of including an article, support for including this article is not clear.
The Coordinator noted that this topic has been subject to the same process as all other topics. What is clear is that this article is still very open and there are strong views both for and against including it. It seems that balance of debate has shifted somewhat to favor its inclusion, with all of the safeguards reflected here, though a decision on this is subject to the balance of the discussion.
Morocco supported inclusion of this article. In order for governments to address the needs of PWD and allocate adequate resources, they need data and statistics.
Columbia noted, regarding Sierra Leone’s suggestion, that using the word “should” was at the request of several delegations and it should be retained.
Asia Pacific Disability Forum supported inclusion of such a provision in the context of implementaion of the convention, noting that safeguards to protect the rights and privacy of PWD must be in place. Most organizations of PWD in the Asia Pacific region have struggled to get a disability dimension included in census efforts. With the competing demands for resources in all countries, this kind of information becomes a valuable tool for PWD to advocate for proper resource allocation to disability issues and for the development of national policies that address their concerns. This is done in the area of gender and has been impactful. It will also assist States in reporting efforts.
China said that many of the reservations appear to relate to concern about inappropriate methods of collection, possibility of abuse and also privacy concerns. There have not been any outright objections to data and statistics collection itself. What is clear is that if States do not know the numbers and situations of PWD, they cannot provide sufficient services, especially in large countries. Based on this, the convention should have an article on statistics and data.
Venezuala strongly supported the need to have statistics and data in the convention, noting that even the UN has data collection unit.
RI asserted that the common objective between States and NGOs is for this convention to tackle obstacles to the full enjoyment of the human rights of PWD. Rational policy development and reform requires rational policy tools, including statistics. Formulation, implementation and evaluation of policies must be based on accurate assessment of the situation and needs of the people concerned. This is what has been said by the Committee of Ministers of the Council of Europe and the importance of gathering statistics and data for policy purposes was strongly reiterated in the Malaga Declaration of ministers responsible for disability policy in the EU human rights system.
WNUSP cautioned that it may eventually oppose including this article. There is a difference between collecting information on disabilities and on collecting information on the enjoyment of human rights by PWD. The former is of concern for inclusion in a human rights treaty. For WNUSP to support this, the focus of the data collected should be on access and rights, rather than disability per se. Finally, we should not widen the scope of partnerships between governments and PWD to include a broad category of other stakeholders.
II expressed reservations as to whether this article belongs in a human rights treaty. If it is included, the title should be changed to “Protection of Data and Statistics”, which is what is actually reflected in the text.
Serbia and Montenegro supported Sweden that this is not relevant to a human rights convention and raises serious concerns about privacy issues.
Ecuador supported inclusion of this article in convention. Statistics
and data are a basic tool for planning for governements in all the work
they do, especially with regard to meeting needs of citizens.
Columbia stated that the current title is more general and it is not clear that changing it to reduce scope of article is really useful. It could, perhaps, be changed to “Collection and Protection of Data and Statistics”.
Sierra Leone suggested adding a footnote regarding II’s proposed new title and then also articulating that any data collected on PWD, in whatever form, must not infringe on the human rights of PWD. There is potention this material – its usage or storage – to be misused.
Jamaica suggested adding language to the reflect the need for application of established research ethics in any data gathering.
Ireland noted that, regarding the title, some conventions use numbers
rather than titles for the articles.