The Final Countdown: Ireland’s Ratification of the UN Convention on the Rights of Persons with Disabilities

Over the next two days, two pieces of legislation which the government has deemed necessary for Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities will be debated in the Dail. While several calls have been made by the disability community to ensure that Ireland ratifies the Convention without delay, there are ongoing human rights concerns with the legislation being proposed which will have a significant impact on the day to day lives of people with disabilities in Ireland.

The Criminal Law (Sexual Offences) Bill is going through its Report and Final stages in the Dail tonight. This Bill includes an amendment by Minister Fitzgerald to define sexual consent, which is vitally important and widely supported by civil society. The wording of the Minister’s amendment in respect of persons with disabilities could however be improved. For example, the amendment states that a person does not consent to a sexual act if “he or she is suffering from a physical disability which prevents him or her from communicating whether he or she agrees to the act.” The term ‘physical disability’ seems unnecessarily limiting here, as there are many different physical and psychological reasons that might prevent the person from communicating consent or refusal. Instead, it would be preferable if the amendment provided that a person does not consent if “he or she is experiencing an impairment which prevents him or her from communicating whether he or she agrees to the act.” Continue reading “The Final Countdown: Ireland’s Ratification of the UN Convention on the Rights of Persons with Disabilities”

The Final Countdown: Ireland’s Ratification of the UN Convention on the Rights of Persons with Disabilities

Guest Post: Extension of the 14 day rule: potential implications for Irish embryos

Human Rights in Ireland is delighted to welcome this guest post from Ciara Staunton. Ciara is a lecturer in Law at Middlesex University London with research interests in the governance of medical research, particularly new and emerging technologies. She received a BCL and a LLM (Public Law) from the National University of Ireland, Galway after which she worked as a legal researcher at the Law Reform Commission of Ireland. She returned to NUI Galway to complete her PhD for which she was awarded an Irish Research Council scholarship (2010-2013). During this time she was a visiting researcher at the Hastings Centre in New York. Prior to joining Middlesex, she completed her post-doctoral research at Stellenbosch University in South Africa where she also co-ordinated the Advancing Research Ethics in Southern Africa program.

In May of this year, scientists reported in Nature and Nature Cell Biology that it is now possible to grow an embryo in the lab up to 13 days post-fertilisation. It is expected that growing embryos up to and beyond this time will provide insight into human development, giving us a better understanding of the causes of infertility and miscarriage.

Although an exciting development, it raises a host of legal and ethical questions in the UK as 14 days is the current cut off point for research on human embryos. This rule, first proposed in the Warnock Report, is enshrined in the Human Fertilisation and Embryology Act 1990, and has been adopted by many jurisdictions across the globe. Day 14 was proposed as the cut-off point in Warnock as it is after this point that the primitive streak (which eventually gives risk to the central nervous system) begins to develop. This date was also deemed important in the Report as twinning will not occur after this point, thus the individuality of the embryo has been asserted. Although justified on these grounds, in reality it is an arbitrary date reflecting a compromise between the competing moral claims on the embryo and the advancements of science. The embryo does not have any special significance that cannot be attached at an earlier or later point in time: a cut-off point was simply needed and this is the point selected by the Warnock Committee and endorsed by parliament.

This rule has remained unchallenged for almost 30 years, largely due to the pace of innovation in reproductive science. Although the scientists behind the breakthrough are not advocating an extension of the rule for now, they are encouraging debate on the topic. Noting that although the 14 day rule does not necessarily need to remain set forever, Phillip Ball states that ‘changing it needs a social mandate and public confidence, and the scientific case for benefits has not yet been properly made’. Signifying the beginning of such a debate, the Nuffield Council on Bioethics has announced that it will consider the issue, and it was also the subject of the recent Progress Educational Trust (PET) annual conference.

The burgeoning debate in the UK makes one consider the status of our own embryos in Ireland. It has been over 20 years since the publication of the Report of the Commission on Assisted Human Reproduction (CAHR), and 18 years since the Irish Council for Bioethics Report on stem cell research. Both reports endorsed embryo research and recommended a regulatory authority to oversee the research, backed up by legislation, similar to the system in the UK. In 2011 the Supreme Court made in clear in Roche v Roche that the embryo is not protected under Article 40.3.3, but that it may be worthy of ‘respect’, a concept that they considered necessary for the Oireachtas to clarify. Yet since then the embryo has continued to languish in Ireland with no rights or protection.

As a result of our messy constitutional history and the lack of a regulatory framework, there is little or no funding of embryo research, a situation that suits opponents of the debate. Yet since 2002, Ireland has supported the European Commission’s decision to fund embryonic stem cell research under FP6, FP7 and Horizon 2020, both in its formal endorsement of the policy, and indirectly through the contribution of Irish taxes towards embryo research in Europe. Such contradictory practices can only be described as ‘an Irish solution to an Irish problem’. However, as the UK begins to consider a revision to its long-standing rule, it is now time for Ireland to consider our own embryos, and there are three features of the UK debate that are particularly relevant.

First, rather than attempt to answer questions on the moral status of the embryo and when life begins, the Warnock Report confined itself to a consideration of ‘how it is right to treat the human embryo’. The status of the embryo is a philosophical debate influenced by our individual moral, ethical, perhaps religious, but deeply personal beliefs that no government should have a role in dictating. Although it must acknowledge the moral debate on the status of the embryo and there must be room for this discussion, the Irish government must confine itself to a determination of the permissibility of embryo research and the parameters in which it must take place.

Second, a period of debate and discussion is not only advisable, but arguably necessary. Six years elapsed between the publication of the Warnock Report and the passage of the 1990 Act. At the PET Conference, Baroness Warnock noted that the 6 year delay was useful as it gave time for researchers to publicly explain the benefits of the research. However, the period of delay since the publication of the CAHR report is utterly inexcusable and has deprived assisted reproduction and embryo research of a clear and coherent regulatory structure. Considering the developments since the CAHR report, an updated report is likely necessary, and this must be followed by public debate and reflection, with a clear commitment to introduce legislation.

Third, respecting the embryo and embryo research are not mutually exclusive. In a recognition that the embryo is worthy of respect, embryo research is only permitted for increasing understanding of serious diseases and the development process of the embryo, and research cannot be done beyond day 14. Any research conducted outside the parameters of the law is deemed to be a criminal offence, with violators subject to fine, imprisonment and loss of licence. The process set down by the 1990 Act is a strict regime that has stood the test of time.

Although not necessarily advocating the introduction of identical regulations, we should not repeat the debacle of the abortion debate and wait for a scandal to force our hand. As the world considers a revision of the 14 day rule, it is time for Ireland to consider, and legislate for, our embryo research.

 

Guest Post: Extension of the 14 day rule: potential implications for Irish embryos

Committee Stage Amendments to the Capacity Bill – Semantic Change or Real Reform?

committeeTomorrow, the Assisted Decision-Making (Capacity) Bill finally progresses to Committee stage in the Dail. This Bill seeks to abolish the outdated ward of court system which currently provides the only mechanism in Irish law for removing the legal capacity of an adult and appointing a substitute decision-maker to take legal actions on that adult’s behalf. The introduction of this Bill has been broadly welcomed by civil society, organisations of persons with disabilities, healthcare professionals, families and state bodies – especially as it has been recognised by government as a key reform which is needed in order to enable Ireland to ratify the UN Convention on the Rights of Persons with Disabilities. However, many organisations and inviduals, including a coalition of NGOs working in the fields of disability, mental health and ageing – have identified changes which need to be made to the Bill to ensure that it fully respects the rights of adults in Ireland to make their own decisions, with support, if they wish.

The Department of Justice has published the amendments it proposes to introduce to the Bill at Committee stage here – where you can also read the amendments proposed by all members of the Dail Select Committee on Justice, Defence and Equality. Some of the amendments proposed by the Department are most welcome – and respond to the concerns highlighted by NGOs based on the text of the Bill as first published. One such amendment is the proposal to remove co-decision making agreements from the court process and to make them a more flexible and accessible instrument, similar to the decision-making assistance agreement. Another example is the change in the name of the state body which will oversee implementation of the new law, from the ‘Office to Public Guardian’ to the ‘Decision Support Service.’ While this might seem like a minor change, it can be viewed as an important reaffirmation of the purpose of the legislation – not to provide for paternalistic interventions into people’s lives – but rather to support individuals’ autonomy and self-determination.

However, other amendments proposed by the Department of Justice demonstrate that the ‘paradigm shift’ called for by the UN Convention on the Rights of Persons with Disabilities has not yet been fully achieved. The Centre for Disability Law and Policy, along with other NGOs, has argued that in order for the Bill to have practical and meaningful effect in the lives of people with disabilities – the threshold for ability to enter into a decision-making assistance agreement should be lowered from what was set out in the original text of the Bill. This has not been included in the Department’s proposed amendments to the Bill at Committee stage.

Further, the UN Committee on the Rights of Persons with Disabilities has now clarified in General Comment 1 that ‘perceived or actual deficits in mental capacity’ can never be used as a justification for a denial or restriction of legal capacity, ‘even in respect of a single decision.’ The Capacity Bill, as originally drafted, relied on an ‘assessment of mental capacity’ to determine what kinds of support an individual could access under the Bill, or whether an individual would have her legal capacity restricted by the appointment of a decision-making representative (a form of substitute decision-making). The amendments set out by the Department have not changed this approach – but the Department has proposed to replace the term ‘mental capacity’ in the Bill with the term ‘decision-making capacity.’ In my view, this change is no more than window dressing, as ‘decision-making capacity’ is given the same meaning as ‘mental capacity’ and continues to be used as a basis for restricting legal capacity. A similar critique can be made the Department’s proposal to remove the term ‘informal decision-making’ from the Bill, while retaining legal protection for third parties who make substitute decisions on behalf of persons who they believe ‘lack capacity’ (the very power which was originally provided to ‘informal decision-makers’ in the original text of the Bill). These proposed amendments therefore, do not address the concerns raised by civil society that those most in need of decision-making support will be denied the opportunity to make binding assistance agreements, and that an unacceptably wide power is granted to substitute decision-makers, who have not been chosen by the person or appointed by the court, to make decisions on behalf of a person they believe to ‘lack capacity.’

Based on the amendments proposed by the Department of Justice, the capacity/incapacity paradigm is now firmly embedded in the Bill – in decision-making assistance agreements, co decision-making agreements, decision-making representative orders, powers of attorney and advance healthcare directives. Again, while a number of submissions were made by NGOs to the Department to advocate that advance healthcare directives be recognised as legally binding in situations of involuntary detention (see here and here) – this proposal has not been reflected in the amendments introducing advance healthcare directives to the Bill at Committee stage. Finally, the relationship between this Bill and other areas of law where ‘mental capacity’ or ‘decision-making capacity’ is used as a criteria to restrict or deny legal capacity (for example in mental health law, sexual offences and eligibility for jury service) has not been clarified in the amendments proposed at this stage.

Along with many others, I will be watching the debate tomorrow with interest, and hope to see some of the concerns outlined here addressed by the members of the Committee. This debate is all the more significant since the Bill is one of the key pieces of legislation which government has deemed necessary in order to facilitate Ireland’s ratification of the UN Convention. In my view, if the Bill is not amended to ensure compliance with the UN Committee’s interpretation of Article 12 of the Convention, then it will remain a barrier to Ireland’s ratification of this important human rights treaty.

Committee Stage Amendments to the Capacity Bill – Semantic Change or Real Reform?

Ireland’s Record on Social, Economic and Cultural Rights – Disability and Mental Health Perspectives

unpoNext week Ireland will be examined by the UN Committee on Economic, Social and Cultural Rights (CESCR) – and the impact of austerity measures on the Irish public over the last several years will be scrutinised. In this post, I highlight some key issues from a disability and mental health perspective which might be addressed by the Committee, based on the concerns outlined by various civil society groups. Continue reading “Ireland’s Record on Social, Economic and Cultural Rights – Disability and Mental Health Perspectives”

Ireland’s Record on Social, Economic and Cultural Rights – Disability and Mental Health Perspectives

A Missed Opportunity? Business and Human Rights in Ireland's Foreign Policy Review

We are delighted to welcome the latest in a series of cross-posts by Dr Shane Darcy from the Business and Human Rights in Ireland Blog. The Business and Human Rights in Ireland Blog is dedicated to tracking and analysing developments relating to business and human rights in Ireland. It aims to address legal and policy issues, as well as highlighting human rights concerns raised by the activities of Irish companies or multinational corporations based in Ireland. The blog is run by Dr Shane Darcy who is a lecturer at the Irish Centre for Human Rights, National University of Ireland Galway.

Readers of the blog might recall that this time last year a number of NGOs made submissions to the Department of Foreign Affairs and Trade in relation to its review of Ireland’s foreign policy. Amnesty International, for example, asked the Department to make it “unambiguously clear that Ireland will not allow its economic interests to trump its responsibility to promote and protect human rights”. Other civil society organisations pushed for action on the development of a national plan to implement the United Nations Guiding Principles on business and human rights.

Continue reading “A Missed Opportunity? Business and Human Rights in Ireland's Foreign Policy Review”

A Missed Opportunity? Business and Human Rights in Ireland's Foreign Policy Review

Civil and political rights in mental health – Ireland's dialogue with the Human Rights Committee

Screen-Shot-2014-04-02-at-6.12.42-PM-475x280Ireland’s progress in implementing the International Covenant on Civil and Political Rights (ICCPR) is due to be examined by the Human Rights Committee next Monday. Many civil society organizations have provided information to the Human Rights Committee on the reality of civil and political rights protections in Ireland – including Amnesty, ICCL, IPRT, Survivors of Symphysiotomy, LGBT Noise, and others. However, relatively few of the submissions made focus on the violations of civil and political rights which affect people with disabilities and those with experience of the mental health system. One submission which does address these issues is that made by the Recovery Experts by Experience (REE) – a group of ‘experienced users/survivors of Mental Health Services, formerly known as the Expert by Experience Advisory Group (EEAG) to Amnesty International Ireland’s Mental Health Campaign.’ You can read the full text of the submission here. Continue reading “Civil and political rights in mental health – Ireland's dialogue with the Human Rights Committee”

Civil and political rights in mental health – Ireland's dialogue with the Human Rights Committee

Legal Capacity and Consent to Sex – Reform for People with Disabilities

Today Senator Katherine Zappone published a Private Members Bill which aims to reform the law on consent to sex as it affects people with disabilities – particularly section 5 of the Criminal Law (Sexual Offences) Act 1993, which I have written about here previously. Continue reading “Legal Capacity and Consent to Sex – Reform for People with Disabilities”

Legal Capacity and Consent to Sex – Reform for People with Disabilities

Sexual Offences, Capacity and Disability – A Call for Rights-Based Law Reform

This post is inspired by the excellent RTE 1 documentary ‘Somebody to Love’ which aired last night and provided a sensitive and thought-provoking exploration of disability, relationships and sexuality. If you haven’t already watched the programme you can catch it on the RTE player here. At several points during the programme the participants mentioned the law which criminalises sexual activity with a person with an intellectual disability – which is worth explaining in further detail here.

Continue reading “Sexual Offences, Capacity and Disability – A Call for Rights-Based Law Reform”

Sexual Offences, Capacity and Disability – A Call for Rights-Based Law Reform

Advance Directives and Ireland's New Capacity Legislation

Yesterday, the Department of Health published its General Scheme for Advance Directives – a proposed addition to the Assisted Decision-Making (Capacity) Bill 2013, to be made at Committee stage. The publication of the scheme is certainly welcome, as is the opportunity for individuals to provide submissions to the Department on the Scheme, which will hopefully inform the final version introduced during Committee stage of the Bill.

There are a number of positive aspects to the proposal from a human rights perspective – most notably that the opportunity to make an advance directive will be open to individuals who wish to create these binding documents for both physical and mental healthcare decisions. Similarly, the scheme provides that it will be possible for an individual to refuse medical treatment, even if to do so might result in death. However, there are some important caveats on these positive provisions which merit further discussion. Continue reading “Advance Directives and Ireland's New Capacity Legislation”

Advance Directives and Ireland's New Capacity Legislation

Strengthening the Human Rights of Older Persons: One Step at a Time?

oewga2013The fourth session of the UN Open-Ended Working Group on Ageing was held from 12-15 August 2013 in New York, and was characterised by greater participation from civil society organisations of older persons, as well as broader representation from African and Asian countries than in previous sessions. Although many actors within group, particularly the Latin American countries, are trying to work towards a new binding instrument to comprehensively protect the human rights of older persons, significant opposition remains from some key States – including the EU, US and Canada.

Continue reading “Strengthening the Human Rights of Older Persons: One Step at a Time?”

Strengthening the Human Rights of Older Persons: One Step at a Time?