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Daily Summary related to Draft Article 6
STATISTICS AND
DATA COLLECTION
Prepared by Landmine Survivors Network
Volume 3, #8
January 14, 2004
Afternoon Session
Commenced: 3:14
Adjourned: 6:08
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
January 15, 2004
Afternoon Session
Commenced: 3:34pm
Adjourned: 6:00 p.m.
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.
The Coordinator asked whether the suggestion by II to amend the title
shifts the emphasis enough to make this easier for some delegations to
support.
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.
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