A public debate very relevant to the CGD community, "Parents or parliament: embryo testing, who decides?" attracted a full house at the Guardian Newsroom in London (16th July 2007). This packed public event organised by Progress Educational Trust (PET) and funded by the Wellcome Trust began with three top speakers: Ann Furedi (British Pregnancy Advisory Service, BPAS), Alison Lashwood (Guy's and St Thomas' Hospital, London) and John Wyatt (University College London).
Each offered very individual insights to help the audience decide whether regulation of Preimplantation Genetic Diagnosis (PGD) - the technique used to test very early stage embryos for genetic mutations that cause disease - should be more strict than that of the much longer established prenatal testing, which is carried out on established foetuses. Was it the Government's role to "impose boundaries on PGD, or...a decision for parents and their clinicians to make?" was how PET had framed the question.
Genetics Counsellor Alison Lashwood explained that PGD has been around since 1990, and is regulated by the Human Fertilization and Embryology Authority (HFEA). Parents currently entitled to PGD include those who have already had a child with a genetic disorder, those at risk of having a child born with or likely to develop a genetic disorder, and those vulnerable to miscarriages. Without PGD, "they could take a chance, roll the dice, and have a 1 in 4 chance [of their next child having the condition]." Knowing for sure their next child would have a genetic condition, people take various routes: "Some ....opt for gamete donation, adoption or remain childless". While prenatal diagnosis (PND) is available nationally on the NHS as standard, with PGD it is "up to the Primary Care Trust (PCT)" in your area.
Lashwood warned that PGD was a long haul and couples must be aware that failure is the normal end result if they are aiming for a "take home baby" . "It is a nine week process, but takes eight months to set up. Of 200 couples a year we discuss PGD with at Guy's, 30% to 40% take up the treatment. Of 100 cycles a year [which are much the same as IVF cycles for infertility treatment] the take home baby rate is 20% [one in five]".
During questions, an audience member said that he and his wife had recently had a consultation about PGD for chronic granulomatous disorder. They had wanted to know whether PGD could ensure their next child would have the right tissue type to be a potential bone marrow donor for their son, who has CGD and a rare tissue type. In their particular circumstances a top London hospital advised they would have "considerably less than a 5% chance of success", partly because the mother was over 38. For both parents, it had been more of a relief than a disappointment to abandon the idea.
Lashwood left us with the message "it is the process that matters. To have some list [of exactly when PGD can and cannot be used] will create more problems than it solves." But she was also "quite glad that the HFEA are there".
Neonatal paediatrician Professor John Wyatt of UCL was well aware that technology gives parents choices which can become a heavy burden. He began by rejecting the notion that anybody could determine the right course of action "from some Olympian, neutral perspective."
Wyatt described parents caught in "an ethical maelstrom" and listed some of the harmful consequences of what he termed "disruptive technologies": "I see the casualties rather than its successes...multiple deliveries, the complications of pre-term delivery...the agonies, the pains, the longing for a healthy child." Weighing the more obvious and measurable physical harms against the benefits did not give a full picture. "The benefits/harms framework is the way we think, but a whole series of other issues become invisible: identity, dignity, relationships..."
He saw PND "where there is already a being" as very different from PGD "which is a matter of creating a being." He admitted that throughout history many children have been born to satisfy human demands of one kind or another, but was concerned that "PGD is putting instrumentalisation in the framework of powerful medical technology." [To be selected as a matched donor, or "sibling saviour" before even being born is one such hotly contested idea].
Counselling around such technologies needed to be much better, he said, judging by the number of parents who say "if this had been spelled out to me I would have chosen differently."
Wyatt took issue with language like the "take home baby rate", as reflecting an increasingly consumerist mindset in both hospitals and their demanding customers, and also objected to such casually stated medical ambitions as wanting to "annihilate" a gene from the family tree. He asked: "Should asymptomatic carriers also be selected against? Is it primarily about the parents' right to choose, or in terms of responsibility?" It was already changing the nature of parenthood, but "is the rhetoric of choice appropriate for parenthood?"
He contrasted the priority given to parental choice before babies are brought into the world with the "massive emphasis on parental responsibility for the child after birth". Showing a clear desire for moral consistency, he closed by asking how these "incredibly powerful disruptive technologies" could be used to enhance social cohesion. He concluded that technologies like embryo testing "cannot simply be marginalised into a private sphere. We must regulate and try and ensure they are used for the common good."
Conversely, Ann Furedi's belief was that citizens were sufficiently "morally literate" to make such intimate and influential decisions without needing the guiding hand of government. Candidly describing herself as "the chief executive of an organisation largely responsible for providing abortions" she was very happy with the vagueness of the Abortion Act and hoped all legislation including that for PGD could be as vague, to enable it to move with the times and be continually reinterpreted. To Furedi, "PGD seems an enormously life-giving technology that actually prevents abortions and the pain of abortions."
Furedi objected to the language of choice for slightly different reasons: "it trivialises hard decisions that women have to make". Of those who approach BPAS, "the overwhelming majority do not see themselves as carrying a child they wanted to be born" but far from evading the ramifications of their decisions, women thought about them deeply and had to live with the consequences. "It is true that PGD is a disruptive technology. So is abortion. Both raise the question of when human life begins, and when it begins to matter".
While she saw many parallels historically between debates over the Abortion Act 40 years ago and over PGD now, there was a difference. "40 years ago, doctors (through the Royal Colleges) did everything they could to keep Parliament off their turf. Now it is the other way around - doctors would like parliament to step in."
As over abortion, one school of thought favours the drawing up of very specific lists of circumstances under which the new intervention can be used. Furedi is in the opposing camp, holding that the best individual outcomes will emerge when the use of PGD is determined at the grassroots, between a woman and her family and her doctor. Decisions made remotely by powerful bodies were seldom well enough informed to be truly ethical: "it is very, very uncomfortable to sit in a room of the great and good".
"Stupid discussions about eye colour", fears about the thin end of a wedge and a nation soon heaving with mums carrying designer babies, were unfounded, and whipped up by some parts of the Media.
Furedi concluded: "Science moves on quite rapidly. Good legislation is open to interpretation and is allowed to evolve to meet the needs of modern society. The Abortion Act was better [than the current direction PGD legislation] in that respect....Do we really think members of the public are gagging to do awful things or doctors are gagging to do things? The Law is not the corral that holds a society in place. Quite often people are quite sensible. I struggle to understand why we need legislation for PGD. How does 8 cells require legislation that a foetus doesn't? Why do we need anything for PGD?
Audience member Ellie Leith of the University of Kent found "an unbelievable level of detail in terms of law in the new legislation". She agreed "the slippery slope discussions always come first. The particular circumstances of the individual come second."
The notion that genetics counsellors were pushing an unwilling population towards high tech solutions was roundly dismissed. Lashwood said: "We don't get points or money for coercion." On the contrary it was parents who were often desperate to try new techniques. "People listen but don't always hear." They embark on exhausting medical odysseys that are statistically unlikely to bring them happiness.
Virginia Bolton said "PGD is not about eugenics. It is giving a family the opportunity of a healthy baby. We choose the one most likely to lead to a pregnancy."
The CGD father in the audience confirmed there was nothing more desperate and energetic than a parent seeking a solution from a doctor. "You are never going to have a beautiful perfect system where exactly the right genetic counselling is given at the right time in the right sequence. Parents go on the internet and discover things before doctors have a chance to tell us, we push, we demand, we ring around the world for second opinions. The genetics counsellor has to do the best they can when we come through their door."
OPINION
Have Your Say on this embryo testing debate
No vote was taken, but this selection of quotes from the audience gives a flavour of the range of views If you would like to comment, please email to editorcgd@googlemail.com. Please state clearly if you do NOT want your comment posted on the website or if you would want to remain anonymous.
Newcastle University academic:
‘I am fascinated by the different approach in the UK. Most countries pay no notice to PND. But there are a variety of approaches to PGD. You go to jail in Germany.
A representative from The Bridge Centre:
"We are a provider of PGD and assisted reproduction. We have got a process, we don't need a list. A light touch with yearly inspections would be good."
A genetics counsellor:
‘PGD can be offered for tissue typing. There is the so-called "yuk factor" but there is a danger of not celebrating these technologies.‘
A fan of small government:
‘We are onto version 7. I say have a code of practice that is constantly under review. Keep the Act general - it should say to do what the code of practice says!’
Somebody said:
‘HFEA acts like a judicial body. It is profoundly unjust.’
Ted Worth, Dept. of Health, dealing with the draft bill:
‘An MP would like to know your opinion and benefit from your experience.‘
The devil's advocate:
‘There is pressure on scientists always to be "important"...Why should PGD be limited to serious situations? Why should parents not request PGD for trivial matters?’
Fragile-X parent:
‘The condition causes serious learning disabilities and [in the event of another pregnancy] I felt I would have had to terminate an alright child! Who judges - would they understand the impact of very serious challenging behaviour?’
Defendant of minimal legislation:
‘All judicial reviews of the Abortion Act have failed’
A practical point:
For a medical procedure with less than a 5% chance of success (which applies to some individuals considering PGD) Primary Care Trusts will not fund it, as it costs £6,000 - £7,000 pounds per cycle. PCTs are not currently obliged to fund PGD but may consider it.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
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