European Parliament Recently Hosted International Seminar on Genetic Discrimination

by Aisling de Paor

On 6th March 2012, Marian Harkin MEP and Phil Prendergast MEP hosted a seminar on the topic of Genetic Discrimination. The event was organised by the Centre for Disability Law and Policy, NUI Galway, in conjunction with the European Disability Forum, and took place in the European Parliament, Brussels. This international seminar, which was chaired by Andre Gubbels (Belgian Ministry), was the first of its kind in the European Parliament and brought together a diverse range of leading experts in the area, with the objective of exploring the case for a European level response to protect the privacy of genetic information and to prevent genetic discrimination. The seminar 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 address this complex area. The event also looked at the challenges and practical problems that arise when attempting to regulate this area, as well as the transatlantic perspectives on the matter.

Speakers included Professor Ciaran Morrison (Centre for Chromosome Biology, School of Natural Sciences, NUI Galway), who illustrated the reality of rapidly advancing genetic science, and the potential of new genetic testing technology.  Professor Yann Joly (Centre of Genomics and Policy, McGill University, Montreal, Canada) outlined the ethical and legal implications arising from the use of genetic information by third parties, exploring the potential for genetic discrimination. Professor Peter Blanck (Burton Blatt Institute, Syracuse University) examined the position in the United States and the Genetic Information Non Discrimination Act 2008, while setting the scene in a historical, sociological and political context. Dr Delia Ferri (Faculty of Law, University of Verona) presented the challenges and possibilities of legislating at European Union level, looking particularly at the privacy and non- discrimination approaches. A roundtable panel composed of Pat Clarke (member of European Disability Forum Executive Committee/ President, Down Syndrome Ireland), Marian Harkin, MEP, Peter Hustinx (European Data Protection Supervisor) and Dima Yared (Office of the High Commissioner for Human Rights) discussed the different perspectives for the way forward.

The Rapporteur’s Report was delivered by Dr Elise Muir (Maastricht University), who reflected upon the emerging consensus that genetic science is advancing at a rapid pace, and is becoming more accessible and more readily available to individuals and third parties. Dr Muir acknowledged that although advancing genetic research offers the potential to revolutionise health care and medical treatment, it could also result in problems and pitfalls with the misuse of sensitive genetic information.  Although a comprehensive European level response is needed in this area, to adequately protect genetic privacy and prevent the discriminatory use of genetic information (and also to avoid a parsimonious approach to the issue), care needs to be taken when considering the nature of the problem and the appropriate way forward.

Professor Gerard Quinn, Director of the Centre for Disability Law and Policy at NUI Galway, stated:

This is the Centre at its best. We exist to inform debate and have impact. Scientific advances are for the benefit of all and we must maintain public confidence.  The best way to do this is to have a European level debate about how to protect people against the abuse of genetic information. Because of this event, a unique partnership between the Centre for Disability Law and Policy and the European Parliament, there is now a genuine European-level debate that should hopefully generate a European-level response in time.”

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New Disability Forum Established by Minister Lynch

The Minister for Disability, Equality, Mental Health and Older People Kathleen Lynch earlier this month announced the establishment of a new Disability forum that will be convened by the National Disability Authority (NDA).  See hereThis forum will be developed along the lines of the Social Inclusion forum with a view to capturing the views and experiences of people with disabilities as service users. The Forum is also charged with facilitating a better consultation process and clearly establish the perspective of the end user and compliment the work of the main established disability organisations.

Minister Lych stated:

“It is very important that we clearly hear the voice of people with disabilities in developing any policies or services that impact on their lives.  I intend to ensure that in the development of policy and the delivery of services for people with disabilities that we benefit from the experiences and expertise of those citizens who have disabilities. I will achieve this by providing a forum to hear their voice on issues affecting their lives.  A number of disabled people have already been appointed by me to the high level group to assist in the implementation of the National Disability Strategy.  This will ensure that their perspective as service users is an integral part of the development and implementation of an action plan for the National Disability Strategy.  It will also ensure that the voice of people with disabilities themselves is heard by me and my officials, and I am in no doubt that it will further compliment the work and perspective of other disability organizations involved in the process.”

The Social Inclusion Forum is a proven model for capturing the views and experiences of people on the ground and it has a capacity for reaching wider and further than the main established organisations. In a similar way, the creation of a Disability Forum will provide the opportunity and occasion for valuable dialogue relative to the disability sector. A published report from the annual Disability Forum will feed into the work of the high level group in the implementation of National Disability Strategy.  It will also successfully capture directly the views and experiences from people with disabilities which will help significantly to inform policy and practice.

The Minister also stated that:

“I am also conscious that there are many people with disabilities and their families, who don’t get an opportunity to have their voice heard and air their concerns and experiences. Last year, the National Disability Authority facilitated a very useful consultation exercise with people with disabilities, their families and carers. This listening exercise helped in no small way to enrich the understanding of what needs to be done and has proven to be a very positive element in the Policy Review of Disability Services. The new Disability Forum will be developed on this listening principle.”

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COE Commissioner for Human Rights Publishes Issue Paper on the Right to Independent Living

The Council of Europe Commissioner for Human Rights Thomas Hammerberg published an Issue Paper entitled “The Right Of People With Disabilities To Live Independently And Be Included In The Community”.  This Issue Paper Follows On From One On Legal Capacity Published Last Month Entitled “Who Gets to Decide? Right to Legal Capacity for Persons with Intellectual and Psychosocial Disabilities”.  Issue Papers are commissioned and published by the Commissioner for Human Rights, to contribute to debate and reflection on important current human rights issues. Many of them also include Recommendations by the Commissioner for addressing the concerns identified. The Commissioner in this Issue Paper made a number of important recommendations on how States can realise the right to independent living.   The Issue Paper identifies the right to live in the community as enabling people to live their lives to their fullest within society and access the public sphere and as “… a foundational platform for all other rights: a precondition for anyone to enjoy all their human rights is that they are within and among the community”.   The Issue Paper very much is based on the emerging discourse being generated by Article 19 of the CRPD, which captures the right to live independently in the community as a distinct right. The Issue Paper also makes a number of references to the synergy between Article 19 of the CRPD and Article 12 on legal capacity and the right to live independently in the community is closely allied to fundamental rights such as personal liberty, private and family life and freedom from ill-treatment or punishment etc.

The Issue Paper sets out that living independently involves the provision of support and that full inclusion and participation in the community involves different elements that include:

  • choice
  • individualised supports that promote inclusion and prevent isolation and
  • making services for the general public accessible to people with disabilities.

The Commissioner expressed concern that “millions of people with disabilities in Council of Europe member states are denied the right to live in the community. Placement in institutions, still affecting the lives of more than a million people with disabilities across Council of Europe countries, is a pervasive violation of this right which calls for a firm commitment to deinstitutionalisation. Many more are isolated within their own communities due to inaccessibility of facilities such as schools, health care and transportation and lack of community-based support schemes.”  This Issue Paper is timely then as the CRPD is driving a worldwide disability law and policy reform agenda.  This provides an opportunity for States across Europe to promote the right to live in the community and participate and contribute to their communities. 

From a mental health perspective it is noteworthy that the Commissioner in the Issue Paper identifies mental illness as a factor as contributing to institutionalisation and subject to detention and forcible treatment.  The Commissioner also referred to Article 14 of the CRPD as countering this by prohibiting “deprivation of liberty on the basis of a disability”. 

In order to ensure the effective enjoyment of the right to live in the community for people with disabilities, the Commissioner for Human Rights urged Council of Europe member states to take the following action:

  1. ratify the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol.
  2. review their legislation and policy in the light of Article 19 of the UN Convention on the Rights of Persons with Disabilities, with a view to ensuring that everyone with disabilities enjoys an effective right to live independently and be included in the community, irrespective of the nature of the impairment.
  3. ensure that all people with disabilities have the legal capacity to make decisions, including those affecting their right to live independently and to be included in the community, through appropriate supported decision-making if needed.2
  4. adopt a no-admissions policy to prevent new placements of persons with disabilities in institutional settings.
  5. set deinstitutionalisation as a goal and develop a transition plan for phasing out institutional options and replacing them with community-based services, with measurable targets, clear timetables and strategies to monitor progress.
  6. allocate the necessary budgetary and other resources towards community-based supports rather than institutional placement and services, in accordance with the principle of progressive realisation.
  7. ensure that the process of transition to community-based services and supports does not fall short of achieving full implementation of the right to live in the community, recognising that smaller institutions or segregated frameworks and mechanisms, such as congregate care, even when physically placed in the community, do not satisfy the conditions set in Article 19 of the UN Convention on the Rights of Persons with Disabilities.
  8. develop and implement a plan for services such as personal assistance, housing, support in finding a job, life planning, and support to family, which prevent isolation within the community, and which ensure that a person’s support needs do not compromise their full and equal participation and inclusion in society.
  9. develop and implement a plan to support families who have a child with a disability to enable the child a full life within family and community and prevent isolation and institutionalisation.
  10. define a statutory and enforceable individual entitlement to a level of support which is necessary to ensure one’s dignity and ability to be included in the community.
  11. review the nature and purpose of services offered to persons with disabilities with a view to enabling them to lead the life they prefer, by maximising their choice and control of support services and by avoiding bundling such services in a way which compromises that choice.
  12. enable persons with disabilities to purchase their own supports and access housing in the general housing market.
  13. critically examine the inclusiveness of community services for the general population with a view to making these services responsive to the needs of persons with disabilities.
  14. ensure monitoring by independent national mechanisms of the human rights of residents of institutions until institutions are phased out, and of the human rights of people using community support services, including the quality and accessibility of community-based schemes and supports.
  15. ensure that persons with disabilities and their representative organisations are involved and participate fully in planning, carrying out and monitoring the implementation of the right to live in the community. 

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UK Joint Parliamentary Committee on Human Rights launches Report on Article 19 UNCRPD

We are delighted  to welcome this guest post by Neil Crowther a leading disability rights and equality advocate.  Neil an independent consultant and writes in a personal capacity. He was previously Director of Human Rights at Britain’s Equality and Human Rights Commission (EHRC) where he led the development and implementation of its domestic and international human rights programme.  Prior to his role as Director of the EHRC Neil led the Commission’s disability rights programme.  

In a world-first, the UK’s Parliament has conducted an Inquiry into the UK Government’s implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities – the right to live independently and to be included in the community.   I was honoured to work as a specialist adviser on the Inquiry of the Joint Parliamentary Committee on Human Rights which began in 2011 and received evidence from over 300 witnesses.  Dr Hywel Francis MP, Chair of the Committee, said: “We are concerned to learn that the right of disabled people to independent living may be at risk through the cumulative impact of current reforms. Even though the UK ratified the UNCPRD in 2009 with cross-party support, the Government is unable to demonstrate that sufficient regard has been paid to the Convention in the development of policy with direct relevance to the lives of disabled people. The right to independent living in UK law may need to be strengthened further, and we call on the Government and other interested organisations to consider the need for a freestanding right to independent living in UK law.” 

The Report draws attention to a number of significant human rights issues, including:

  • the need for freestanding legislation to protect the right to independent living in UK law,
  • the effect of current reforms to benefits and services on the ability of disabled people to enjoy independent living,
  • the role played by the UNCRPD in policy development and decision making at all levels of government,
  • the use of equality impact assessments,
  • the effects of devolution on implementation of the UNCRPD

The right to independent living does not exist as a freestanding right in UK law. Although it is protected and promoted to some extent by a matrix of rights, the Committee believes that this is not enough. It argues that the Government and other interested parties should immediately assess the need for, and feasibility of, legislation to establish independent living as a freestanding right. In addition, the Committee concludes that the UNCRPD is hard law, not soft law, and that the Government should fulfil their obligations under the Convention on that basis, and counter any public perception that it is soft law.

The Committee finds that:

  • reforms to benefits and services risk leaving disabled people without the support they need to live independently;
  • restrictions in local authority eligibility criteria for social care support, the replacement of the Disability Living Allowance with Personal Independence Payment, the closure of the Independent Living Fund and changes to housing benefit risk interacting in a particularly harmful way for disabled people;
  • some people fear that the cumulative impact of these changes will force them out of their homes and local communities and into residential care.

It also finds that:

  • the Government had not conducted an assessment of the cumulative impact of current reforms on disabled people. The Report urges them do so, and to report on the extent to which these reforms are enabling them and local authorities to comply with their obligations under the UNCRPD.
  • the UNCRPD did not appear to have played a significant role in the development of policy and      legislation, as is required by the Convention. The Committee therefore argues that the Government should make a commitment to Parliament that they will give due consideration to the  articles of the Convention when making legislation.
  • Further, the Committee deprecates changes to the duties of public authorities in England under the Equality Act 2010, which no longer require the production of equality impact assessments of changes in policy, nor the involvement of disabled people in developing policies which will affect them.

The Committee finds variations in the manner in which the devolved administrations have implemented the Convention, and uncertainty as to the role the UK Government should play in ensuring implementation. The Report notes with disappointment the lack of a strategy in Northern Ireland to promote independent living and reminds the UK Government to acknowledge their responsibility to ensure implementation.

The Committee also considers a range of other issues relating to independent living. It recommends that the Government should take further action to ensure that assessments for care needs are portable across the country in order to ensure disabled people’s right to choose their place of residence. It also expresses concern over a growing incidence of hate crime against disabled people and urges the Government take action to foster respect for the rights and dignity of disabled people. 

Neil will write more about the issues raised by the Inquiry and about other work he has been involved in on Article 19 and the Convention more generally in a separate blog.

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Interdepartmental Group to Examine Interaction of Persons with Mental Health Problems and the Criminal Justice System

Alan Shatter (Minister for Justice, Equality and Defence), James Reilly (Minister for Health) and Kathleen Lynch (Minister of State at both Departments with special responsibility for Mental Health at the Department of Health), announced that they have tasked an Interdepartmental Group to examine the issue of people with mental illness coming into contact with the criminal justice system.  This is a very welcoem development in an area of law and policy that has received little attention in the past.  The establishment of the Interdepartmental Group is on foot of a recommendation of the Thornton Hall Project Review Group.  The Interdepartmental Group includes representatives from the Department of Justice and Equality and the Department of Health as well as relevant services including the H.S.E, the National Forensic Mental Health Service, the Garda Síochána and the Irish Prison Service and is jointly chaired by both Departments.  The Group is due to report back to the responsible Ministers by mid 2012.

Terms of Reference of the Interdepartmental Group is as follows:

Pursuant to the recommendation of the Report of the Thornton Hall Project Group (July 2011) the Cross Sectorial Health/Justice Team is charged by the Minister for Health and the Minister for Justice and Equality with examining issues relating to people with mental illness or a mental disorder interacting with the criminal justice system and its agencies and having regard to Government policy in relation to the delivery and future development of the Forensic Mental Health Services, including the principles which should underpin the delivery of such services as set out in A Vision for Change shall endeavour in particular:

    1. to identify the circumstances where such interactions take place, the agencies and services potentially involved and the issues that arise (including interaction with the Gardaí, decisions to prosecute or not to pursue criminal charges, diversion, persons in custody including imprisonment and post custodial arrangements);
    2. to establish if practicable an indication of the annual number of incidents or individuals involved in the different circumstances;
    3. to set out existing practices, background and developments;
    4. to take into account evidence of good practice in other jurisdictions;
    5. to take into account relevant reports and recommendations;
    6. to consult as appropriate;
    7. to consider the circumstances where it might be appropriate to divert people suffering from a mental illness or mental disorder away from the criminal justice system to more appropriate services, how best to achieve this and whether guidelines, principles or statutory provisions should be introduced to facilitate or inform such diversion;
    8. taking into account the resources available and international evidence as to good practice in the field, to consider how best to deliver mental health services to persons properly in the criminal justice system, to facilitate their return in due course to the community and to ensure necessary treatment continues after release

and

  1. to report to and make recommendations to the Minister for Justice and Equality and Minister for Health for consideration by the Government by mid 2012.

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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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