Monthly Archives: February 2012

Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response

The Centre for Disability Law and Policy, Galway will co- host a seminar with Marian Harkin MEP and Phil Prendergast MEP, and in conjunction with the European Disability Forum, on the topic of ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’.  The seminar is taking place from 2- 6pm on 6th March 2012 in the European Parliament in Brussels.  There will be no registration fee to attend.   The purpose of this event is to bring together key stakeholders in the area to examine and further highlight the case for a European level legal and policy response to protect the privacy of genetic information and to prevent genetic discrimination, particularly in the employment and insurance contexts.  A poster with a list of speakers is available here

The Centre for Disability Law and Policy hosted a conference on 19th November 2011 entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’.  The conference highlighted the interdisciplinary nature of this area and focused on the interaction between genetic science, technology, ethics and the law, and in particular, how best to regulate this complex area.  On foot of the scientific and legal expertise offered, and on consideration of the potential for abuse and the fundamental human rights at stake, the conference strongly indicated a need for an appropriate regulatory response at European level to protect the privacy of genetic information and to prevent genetic discrimination.  The event in March 2012 aims to build upon the discussion generated from the conference last November and further highlight this issue at European level as one which merits attention.

For further details, or to register for this event, please go to: http://conference.ie/Conferences/index.asp?Conference=161

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Trends in Focal Points: Monitoring the CRPD

As explained previously, Article 33 of the Convention on the Rights of Persons with Disabilities is one of the most innovative and important articles in the Convention, as it has the potential to transform the way that human rights treaties interact with national laws. This potential will only be realised, however, if the framework laid out in Article 33 is effectively established and maintained.  Therefore, it is important to keep track of the progress made by state parties to the Convention, to establish best practices and encourage continual progress. The first component of the Article 33 framework mentioned in the Convention is the focal point.  According to Article 33.1 of the CRPD, “States Parties, in accordance with their system of organization, shall designate one or more focal points within government for matters relating to the implementation of the present Convention”.  This single sentence does not provide much guidance as to either what the focal point should be, or what duties and functions it should have.

The UN has established some guidelines for the placement of focal points, although they note that, due to the variety of governments around the world, it is impossible to prescribe any particularly specific rules. A few general principles can be outlined, however.  First, the focal should be established at the ministry level in government.  The implementation of the Convention requires action at the most senior levels of government, as well as requiring action in all ministries or departments.  The focal point must be placed high enough within government to ensure all necessary action and cooperation takes place.  While placing the focal point within an existing ministry can make it easier to ensure funding and staff, by taking advantage of structures that already exist, the use of a Health Ministry or similar body is discouraged, as it promotes the medical, rather than social, model of disability. Wherever it is place, a focal point must be able to lead the process of implementation within a state party’s government.  The goal of creating focal points is to ensure that some part of a state party’s government will remain focused on the process of implementation, and therefore avoid the delays and slow progress that have so far been all to common in the implementation of human rights treaties.  The Convention also allows for, and even encourages multiple focal points for federal states or other states that have multiple levels of government, all responsible for some part of implementation.
So far, a few distinct trends have emerged in state parties that have established focal points, and in general, these trends line up with the guidelines provided by the UN and the function and purpose of the focal point.  One popular location for focal points is within already established Ministry level disability rights offices.  This is the case in Canada, with the Office on Disability Issues as well as New Zealand (the Office for Disability Issues) and the UK (The Office for Disability Issues).  In addition, the UK will establish multiple focal points, one within each of the devolved governments of Scotland, Wales and Northern Ireland. Another common location for the focal points is within the Ministry of Social Affairs, or similar ministries.  This is the case in Denmark (Ministry of Social Affairs), Austria (Federal Ministry of Labour, Social Affairs and Consumer Protection), and Germany (The Federal Ministry for Labour and Social Affairs), though Germany, like the UK, will use multiple focal points, with some of the Länder establishing their own focal point, in addition to the one at the national level.
Outside of these trends are countries such as Australia, which has appointed it’s Attorney General’s office and the Department of of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) as joint focal points (see here).  Another example is Ecudaor, which has appointed its Ministry of Justice and Human Rights, working in Coordination with CONDAIS (see here). (Note: CONDAIS is a National Disability Council.  Variations of this acronym are common for National Disability Councils throughout Latin America, and many of them are involved at the focal point level in some way.)  While many of these trends are encouraging, it is important for activists and other promoters of disability rights and human rights more generally to carefully watch the process of appointing and maintaining focal points.  So far, only a small minority of state parties to the CRPD have named focal points, and there is a vast difference between simply naming the body that will serve as the focal point, and actually creating and maintaining a body that can effectively implement a human rights treaty.  While currently the framework of Article 33 only applies to the CRPD, if the process is successful, it could be applied to other areas of human rights.  For all of these reasons, it is important to keep a close watch on developments in this area.

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