Why we must take control of this ethical minefield
IN 1990, 12 years after the birth of the world’s first test tube baby, our nearest neighbour passed into law the Human Fertilisation and Embryology Act, described by then health secretary Kenneth Clarke as “probably the most important legislation in 20 years”.
It provided, among other things, the legislative framework for the creation of human embryos outside the body and their use in treatment and research, and for the establishment of the Human Fertilisation and Embryology Authority (HFEA), the first statutory body of its type in the world with responsibility for licensing, monitoring and advising on human embryo research and assisted reproduction treatment (ART).
In the Commons debate on the bill before it became law, Mr Clarke said the public consultation process had “brought in... a scale of responses that was quite out of the ordinary”.
“We received views not just from organisations and lobbies and the leading medical, scientific, legal and religious bodies, but also from many individual members of the public who feel deeply, on one side or the other, about the issues.”
The depth of feeling did not prevent the British government from taking responsibility for this area of fast-moving science.
Neither did it shirk from updating the law in 2008 when a new act introduced a new legal framework governing fertility treatment and embryo research in Britain, including permitting the creation of “human admixed embryos” (embryos created from a combination of human and animal genetic material for research).
Chairwoman of the HFEA Professor Lisa Jardine welcomed the new law as a “momentous” occasion for the regulatory body and fertility patients. “Parliament has provided a clear framework for the future and a solid base on which to regulate 21st century practice within 21st century law,” Prof Jardine said.
Cross the channel to Ireland and no such regulation exists. With the exception of an EU directive that relates to standards of quality and safety in the use of human tissue and cells, medical practice in the field of infertility and human embryology has been loosely governed by ethical guidelines of the Irish Medical Council since 1989.
Broadly speaking, these state that ART should only be provided by suitably qualified professionals in accordance with international best practice; that if you offer donor programmes, you must “consider the biological difficulties involved” and that practitioners should not engage in human reproductive cloning. These are guidelines, not law.
The need to legislate this area was recognised 10 years ago by former health minister Micheál Martin when he set up the Commission on Assisted Human Reproduction (CAHR) and tasked them with reporting on possible approaches to regulating AHR, as well as the social, ethical and legal factors to be taken into account in determining public policy. The report, five years in the making, and which brought together some of the country’s finest medical, scientific and legal minds, was published in 2005. Not one of its 40 recommendations — foremost among them the need for an independent statutory regulatory body to regulate AHR — has been implemented.
Chairwoman of CAHR, scientist Professor Dervilla Donnelly is, to say the least, disappointed.
“We had committee of people who were all experts in their own field, it took five years to do and was very difficult to write. But in the long run it presented greater clarity and had the legislation been brought in, it was nearly written for them,” Prof Donnelly told the Irish Examiner.
She understands that assisted human reproduction — and particularly the fate of surplus embryos generated through IVF — is “ethically divisive” and presents a challenge to the Government.
“I don’t altogether blame them but even if they only acted on one aspect — to set up a regulatory body and lay down rules and regulations — that would be something,” she said.
Dr Deirdre Madden, an expert in medical law and ethics and a member of CAHR, said she believed they had produced “a very reasonable and workable report” and she too was disappointed nothing has so far come of it.
She said she understood why the Government might have wanted to delay legislating until after the Roche V Roche case — in which the Supreme Court was forced to decide on the fate of surplus embryos and, in doing so, clarify the meaning of the word “unborn”. But that had happened last February, the court had determined the embryo outside the womb was not afforded Constitutional protection, and this gave the Government the clarity it needed to proceed.
“But the wheels of legislation take a long time to turn and I expect it will take three years, with the best will in the world [before legislation is enacted], and at least two from the point where the draft heads of bill are ready to go before Cabinet,” Dr Madden told the Irish Examiner.
In December 2006, Dr Colette Bonner, deputy chief medical officer at the Department of Health, told a private session of the Joint Oireachtas Committee on Health and Children that she expected agreement on the legislation “within the next 18 months”.
Dr Madden said she understood that the economy was a priority at the moment and that from a political viewpoint, legislating in the area of AHR was “a very difficult issue to deal with because of the diversity of moral views in relation to infertility”. But she said the Government had a responsibility to legislate on our behalf.
“If we ignore it, it will not go away and we elect people to take on that responsibility and to legislate for us.
“In the past we could take comfort from Medical Council guidelines, but guidelines should not take the place of legislation. In the absence of legislation, it’s open season really if anyone wanted to come in and work in this area. All you need is a licence from the Irish Medicines Board (IMB) and once you comply with the terms of the licence, which are largely technical — there are no ethical boundaries — there is nothing to stop, say, cloning.”
She also pointed out that the Medical Council guidelines do not extend to embryologists, fertility nurses or genetic counsellors.
The CAHR report was given to the current Joint Oireachtas Committee on Health and Children in June 2007 and according to the clerk of the committee, it has never been discussed in public session. Committee member Kathleen Lynch said: “We did intend to deal with that report but because of the chaos of health board reconfiguration, slashed health budgets etc, we had to deal with other things first.”
She said a subcommittee is now in the process of being set up to look at the CAHR report it and “once that is in train... it shouldn’t take long because the work has been done by the Commission and the committee just needs to come up with recommendations in relation to what should be legislated for. It should not take longer than six to eight months”.
Ms Lynch said she believed opposition to AHR was “not so much to do with the techniques used to get people pregnant”, as “the issue of surplus embryos”, but the reality was “this issue is being dealt with every day of the week in fertility clinics, we just need to legislate for it”.
FG senator Frances Fitzgerald, also a member of the joint committee, said: “In all these areas, we’ve been shamefully slow. There is a huge ambivalence in this area, as if we are almost frightened by it. The men and women of Ireland deserve to have a service that is regulated and that they can have confidence in.”
Dr Madden said patients also deserved to have the comfort of a regulatory body monitoring and tracking outcomes of fertility clinics and that longitudinal studies needed to be carried out on children born through AHR. “There is no point in burying heads in the sand, the issues will not go away and... we need to reach consensus.
“Not everyone will be happy. Every country in the world that has tried to legislate for this has had difficulties but we are just one of three [Poland and Romania are the other two] that have failed to do so.”
Dr Mary Wingfield, clinical director of the Merrion Fertility Clinic, and another member of CAHR, said its report was “excellent” and is now “gathering dust”.
She said while clinics did not want “restrictive legislation” they needed clarity on issues such as what rights a patient had to surplus embryos if one partner died, or what the legal position of a parent was in relation to the child born from a donor egg or sperm or who the recognised parent was in the event of surrogacy.
In addition, there is nothing to prevent children conceived through the use of donated eggs and sperm from meeting and marrying because there is no Irish law to say children born in this way are entitled to know their genetic parents.
Dr Declan Egan, medical director of the Galway Fertility Unit, said he believed the CAHR report was “politically buried” and will go “from committee to committee”.
However, he also cautioned against restrictive legislation saying that AHR “runs quite well under Medical Council guidelines and under IMB inspections”.
Dr John Waterstone, medical director of the Cork Fertility Centre, said he did not believe the absence of legislation “impinges seriously on what we do” but that it was a problem for couples getting pregnant using donor eggs or sperm. “It’s a bit grey as to who are the legal parents of the babies that result.” However, he said he was happy enough to continue the way things are, that in Ireland “nobody’s doing anything silly” and that it was “more the absence of legislation about parental rights and duties” that caused patients anxiety and stress. Dr Edgar Mocanu, consultant-in-charge at the Human Assisted Reproduction Unit (HARI) in Dublin, said current guidelines and EU laws applicable in Ireland are very comprehensive and that Irish legislation governing ART should be considered only in the context of a “dynamic law” which reflects contemporaneous changes in the practice of ART worldwide.
At the Clane Fertility Clinic, Dr Osman Shamoun said he believes the Government has put the CAHR report “in a drawer” and is not addressing it “because it will open a can of worms”.
Dr Madden said the onus is on the Government to address it regardless of how divisive it may be.
“The bottom line is that’s what we elect people to do; to find out what the communities they represent feel, and not just to be informed by their own moral conscience,” he said.
* 75% of couples who received counselling found it beneficial.
* When problems of conceiving first arose, 65% of couples reported a sense of isolation, approximately half experienced anger and/or bitterness, more than 30% experienced guilt and almost one quarter were in denial.
* Approximately six in 10 found it difficult to discuss the topic with family and friends.
* More than half said infertility affected their sexual relationship, although interestingly, 78.6% felt closer to their partner. However, of the couples that were experiencing difficulty, more than nine in 10 did not seek professional help.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
