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Time to talk — opening the debate on bioethics in Ireland

From rapid advances in gene technology to developing debates regarding end-of-life care, bioethical concerns and discussions are increasing in number, complexity and importance.

However, some experts are concerned that since the dissolution of the Irish Council for Bioethics (ICB) some eight years ago, Ireland lacks a suitable public, medical and policy forum in which to air these bioethical discussions.

The ICB was established in 2002 as an independent, autonomous body to consider ethical issues resulting from rapid developments in medicine. However, following eight years of work, it was closed in October 2010 when funding ceased during the economic crisis.

Two years later, the National Advisory Committee on Bioethics (NACB) was established with more narrow terms of reference compared to the ICB. The task of this Committee was to directly advise the Minister for Health on the ethical and social implications of scientific developments in human medicine and healthcare.

Since its foundation, the NACB has considered a number of issues and produced opinion documents, including one on consent for blood transfusion and another on detention of voluntary and involuntary patients in mental health facilities. Its most recent document was titled Nudging in Public Health — An Ethical Framework, which was published in April 2016. However, the NACB has not met since September 2015, over two-and-a-half years ago.

“No decision has been made regarding the next topic on the work programme for the NACB,” a Department of Health spokesperson tells the Medical Independent (MI).

“The NACB last met on 24 September 2015. Given that the topic of the NACB’s next project has yet to be determined, no specific date has been selected for the NACB’s next meeting.”

At the last meeting of the Committee, members drafted a letter to be sent to the Minister for Health “to consider a possible review of the Committee’s terms of reference following its first three years in operation”.

The Department would not confirm whether such a review has been conducted or completed. However, the Department notes, “there are no ongoing costs associated with the Committee.” There is a Bioethics Unit in the Department of Health, which “provides secretariat support and research services to the NACB,” the spokesperson adds.  The Department says it was not in a position to provide anybody to speak in further depth regarding the work of the NACB.

The current Chair of the NACB is Prof Andrew Green, who is a Clinical Geneticist at Our Lady’s Children’s Hospital, Crumlin, Dublin, and Professor of Medical Genetics at University College Dublin (UCD).

“My own view is that the Department of Health’s National Advisory Committee on Bioethics has contributed significantly to bioethical debate in Ireland,” Prof Green tells MI, “with its work on the use of nudging in public health, on the ethical issues in detention of voluntary and involuntary patients in mental health institutions and on specific consent for blood transfusion.”

Prof Green says that despite its recent inactivity, the NACB is ready to restart once the Minister for Health Simon Harris indicates that he would like it to consider a new topic.

“Although the Committee has not met recently, it is available to provide bioethical advice to the Minister on any bioethical issues which he wishes the Committee to consider,” says Prof Green.

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Prof Andrew Green

But with the dissolution of the ICB at the beginning of this decade, combined with the prolonged inactivity of the NACB, some experts argue that there is a significant vacuum in bioethical debate and discussions. 

Forum

“The advice the ICB provided to the State was not routinely taken up,” says Dr Barry Lyons, who is a Consultant Anaesthetist at Our Lady’s Children’s Hospital, Crumlin, and a lecturer in Medical Ethics at Trinity College Dublin (TCD).

“However, the ICB reports, press releases and societal engagement through the Big Science Debates broadcasted on RTÉ Radio One served to stimulate public consciousness of controversial or difficult ethical matters,” he tells MI.

In 2012, Dr Lyons published a paper in the Cambridge Quarterly of Healthcare Ethics titled ‘The Irish Council for Bioethics: An Unaffordable Luxury?’

“And the ICB did deal with socially divisive and provocative issues, including stem cell research, euthanasia, genetic data-banking for forensic use and human enhancement,” he says.

“Since the ICB was defunded and closed by the State, no single body has attempted to publicly explore bioethical issues in science to the same extent. This is troubling, because scientific advances seem inevitably to lead to an increasing number of morally contentious questions.”

Dr Lyons does not believe the NACB has filled the space left following the Council’s demise.

“While the ICB has been replaced by the NACB, it functions under the auspices of the Department of Health,” he says.

“Whether this lack of independence has had a negative impact upon the range of subjects chosen for consideration, or possibly upon the kind of advice offered, is unclear.

“Certainly, the NACB appears to have been less productive, dealt with significantly less contentious matters, and has a substantially lower public profile than its predecessor.”

UNESCO

Established in 2016, UNESCO Bioethics Ireland is based in the Centre of Bioethical Research and Analysis at NUI Galway. It is the Irish Unit of the UNESCO Chair in Bioethics and according to its website, it aims to “promote excellence in bioethics education and reflection on future bioethical directions, particularly with regard to ethical questions raised by new biotechnologies and its implications for society”.

Dr Oliver Feeney is a researcher in political theory and bioethics at NUI Galway and is the head of UNESCO Bioethics Ireland.

He sees its role as very much filling a gap left by the winding-up of the ICB earlier this decade. 

“I think the main thing since the Irish Council for Bioethics was defunded back in 2010 is there hasn’t really been a proper national forum [for bioethical discussion],” Dr Feeney tells MI.

“The National Advisory Committee [on Bioethics] is more or less within the purview of the Minister for Health. So he or she is the person who would bring them together or ask for advice on a given topic. It would be kind of self-choosing its area of work. In terms of public engagement, it doesn’t work in those areas.

“What we are trying to do is work under the broad UNESCO umbrella and harness bioethical issues for the good of people, human health, education, and so on. 

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Dr Oliver Feeney

“We are looking at bringing together a type of forum in the Irish context that would look at international bioethical issues, particularly in the Irish context. What we are looking at is education, looking at harmonising the different work of bioethics educators in Ireland. One person could be doing something in Galway, another in Belfast and Cork, the three might not know what each are doing or what is overlapping, etc.”

Dr Feeney says the group is attempting to bring researchers and medical experts in the field together and develop “public engagement”.

“One of the things that has been missing since the Irish Council for Bioethics is a regular kind of national arena where these issues can be discussed, whether it is IVF or gene editing or e-health,” he says.

Taking the current progress of the Assisted Human Reproduction Bill through the Houses of the Oireachtas as an example, Dr Feeney thinks there should be a wider public conversation on its contents.

“It is the same time as the abortion referendum and people’s attentions are focused [elsewhere],” he tells MI.

“However, we waited a long time for something on this [and] it would be nice if there was more public discussion involved. It is very quiet.

“I think… that in parallel to the work that is happening [in the Oireachtas]… there would be a proper, deliberative engagement strategy akin to what they did with the Citizens’ Assembly [and the Eighth Amendment] that would look at the Bill. This Assembly could not just evaluate whether it is or isn’t a good idea, but also evaluate the key ethical, legal issues.

“It would also generate a better understanding of it. It is an exciting time — we waited long enough [for the Assisted Human Reproduction Bill] and it would be nice if there was more than just the core group having a say on it.  I think it would very useful to have a broader discussion on that.”

Other experts also think it is time for a more structured and broader public debate around bioethical matters.

Prof David Smith is Associate Professor of Healthcare Ethics in the RCSI and Director of the MSc in Healthcare Ethics and Law in RCSI and RCSI-MUB Bahrain. He was a member of the ICB and is currently a member of the NACB.

Lacuna

“Well, the Eighth Amendment is generating a lot of debate but I think in other [medical ethical] areas that arise, there is very little debate going on,” Prof Smith tells MI.

“The fact that the Irish Council for Bioethics was done away with was an important retrograde step in Ireland, because that did generate quite a lot of debate. Now, most other [European] countries have national bioethics councils and they, for example, would issue documents and guidelines and they generate quite a lot of discussion and I think that’s a lacuna in Ireland at the moment.”

Prof Smith is a former member of the ICB and he thinks it is time for Government to consider reviving the Council, or something similar.

“I think it would be time for the Government to rethink and maybe say ‘we do need something like this’ [ICB].

“If you look at other countries, they have made significant contributions to the debate in a variety of areas, like the German Ethics Council, the Swedish one [Swedish National Council on Medical Ethics] and the UK [Nuffield Council on Bioethics] all issue very good documents.

“The Irish Council for Bioethics did issue some very important documents that really helped the debate and they have been referred to in academic journals and also in the development of legislation. An important one was when the Council developed a document on healthcare directives and that influenced quite significantly the legislation on it.”

Research

While agreeing that there needs to be debate around medical ethical matters, not all experts in the field regard the reintroduction of the ICB as the best path to follow.

 “I think it is more important that the medical schools and postgraduate colleges work together to develop a nexus of research and CPD/formal postgraduate education (such as the RCSI Masters in Ethics and Law), rather than another Irish Council for Bioethics,” Prof Des O’Neill, Professor of Medical Gerontology at TCD, tells MI.

“[ICB] was notable for a marked absence of ethicist clinicians with a track record in peer-reviewed scholarship.”

Prof O’Neill thinks that the medical education sector is an important place for further ethical education. 

“In general, ethics teaching has lagged behind other aspects of the medical curriculum, and is not as prominent as it should be on the CPD circuit,” says Prof O’Neill.

“On the other hand, [I] spent an interesting year at meetings about ethics in Irish public life in the Long Room Hub in TCD at the earlier phase of Michael D Higgins’s Presidency. The Medical Council ethics guidelines are streets ahead of the ethical guidelines of any other profession in Ireland in terms of connectedness to current developments [and] comprehensiveness.”

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Prof Des O”Neill

Prof O’Neill adds that he thinks “articulacy” in discussions involving medical ethics is crucial.

“The greatest challenge is to promote articulacy in ethical discourse, and in this area, we are certainly at a developmental phase and many clinicians may not feel prepared to tease-out these issues in the current, often adversarial, manner in which issues are debated in Irish media and public life,” says Prof O’Neill.

“However, it is encouraging that the RCPI, for example, has gathered together a wide range of interested clinicians to develop position statements on ethical issues, such as advance care planning.

Plenty to talk about

Whatever the nature of the forum that should exist for bioethical debates, all experts contacted by this newspaper agree that there is much of importance to be discussed.

Prof David Smith of the RCSI notes a number of significant current bioethical issues and others coming rapidly down the road that require wide discussion around ethics, legislation and policy.

“Well, in terms of currently, I suppose the whole issue of assisted reproduction [is topical]. We have a Bill, or a draft Bill, out there. But we never actually legislated on it and I think there are a number of areas that need to be looked at in the whole [area] of assisted reproduction. Particularly in the area of surrogacy — that has never been adequately addressed in the legislation or [only] in a vague public academic debate on it,” says Prof Smith.

 “I’ve seen very little discussion about it. The Bill is just working its way through; it hasn’t really generated that amount of interest that maybe it should have generated.”

Gene editing

In terms of other impending bioethical issues, Prof Smith mentions research and end-of-life care as particular challenges.

“I suppose the other area that has had very little debate is research. Currently, most research ethics committees are trying to ensure that we are GDPR [General Data Protection Regulation] compliant, and that’s going to have an impact on how research is conducted within the country,” he says.

“Then, the whole area of end-of-life care — there is going to be issues around that.

“I know that there are a lot of conferences being held, like the Kaleidoscope Conference [16th Kaleidoscope Conference — ‘Weaving the Strands of Palliative Care’, 30 and 31 May 2018, Croke Park Conference Centre] is coming up at the end of this month. That is organised by the hospice [movement] and that will look at end-of-life care. But the people who actually attend those conferences tend to be people who are involved in it on a practical level.  But there is very little public debate on areas like that, I think.

“Also, gene editing would be one of those areas where there has been very little debate, even though the Royal Academy [‘Gene Editing: Technologies, Potential and Ethical Implications’ one-day conference, Royal Irish Academy, 26 April] had a conference on gene editing. But I think there are certain areas where people aren’t aware.”

Politicians

Dr Barry Lyons of TCD says this is a vital time for the general public, policy-makers and those working in medicine to discuss these bioethical issues.

“It seems really important that significant bioethical questions are debated in the public square,” Dr Lyons tells MI.

“Policy decisions made around these issues are likely to have a considerable impact upon the health, wellbeing and security of Irish citizens, and so it is essential that there is a general awareness of these matters amongst the public.

“Politicians, who make regulatory provisions or refuse to do so and deal with the challenges of scientific advancement, have an obligation to facilitate greater social understanding of these critical issues. This duty does not appear to be taken particularly seriously at present.”

Unregulated

Ireland is “woefully unregulated” when it comes to many of these issues, warns Dr Oliver Feeney of UNESCO Ireland Bioethics and there are many areas that need to be discussed, he says.

For example, the developments in gene editing and CRISPR [Clustered Regularly Interspaced Short Palindromic Repeats] is an area where issues over regulation, ethics and patenting need to be discussed, he says. He also highlights e-Health as another area where bioethical concerns will come increasingly to the fore due to data protection and other matters.

“One of the key things facing the medical establishment… when it comes up with new developments and treatments or research… is getting it communicated to the general public in terms of managing expectations,” says Dr Feeney.

He says there are experts in Ireland who “certainly have the capabilities” in terms of bioethics.

Dr Feeney again points to the example of the Citizens’ Assembly and the abortion referendum as a template.

“You can have the general public, medical experts, politicians, ethics experts and so on and bring them together. So it’s not a once-off conference or an area where one group of people tell another group what’s going on. It is an ongoing process.”

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