11 October 2006
Navigating Hype in the Dolly Decade
By: Josephine Quintavalle— 2006-2007
Josephine Quintavalle is Founder of Comment on Reproductive Ethics (CORE) Seminar on Wednesday 11 October 2006
1 The first vehicle of hype and deception I want to discuss tonight is the Human Fertilisation and Embryology Authority (HFEA), and I will take this opportunity also to tell you briefly about the founding of Comment on Reproductive Ethics (from now on referred to as CORE).
As an organisation, CORE has tried for more than a decade to engage in debate in the many ethical issues associated with assisted reproduction; trying to keep these very important controversies in the forefront of concern and to encourage maximum participation from the general public in the processes of decision making. A fundamental principle of the group is an absolute respect for the human embryo.
At the very first CORE’s focus was almost exclusively on infertility treatment and scientific research related to infertility, but with the discovery of embryonic stem cells in 1998 by the American expert, James Thomson from Wisconsin, in no time we were also drawn into the stem cell debate, and inevitably into cloning.
There is no way I can take you through the complete history of these years, but my aim is to show you through a series of examples how some scientists and various lobby groups in favour of destructive research on the human embryo have continually hi-jacked the debate with hype, half-truths and, at times, outright lies. I will use examples from the HFEA, the media in general, the public specifically through a research project of the Wellcome Trust, and two Government initiatives, the Chief Medical Officer’s Committee on Cloning, and finally the House of Lords’ Select Committee on Stem Cell Research.
In January 1994, while I was working as a pregnancy crisis counsellor for the LIFE organisation, I received a copy of an HFEA Consultation on Donated Ovarian Tissue in Embryo Research & Assisted Conception. I would like you to look at the first page of a series of materials I have prepared for you, where you will see the questions being addressed by this public exercise [handout 1].
CORE was set up five months later in May, by a group of 15 professional women outraged that a civilised society could possibly think it necessary or wholesome to ask some of the questions that the HFEA addressed. In particular and to this day the question under treatment (g), ‘Should eggs or ovarian tissue from fetuses be used in treatment?’, continues to fill me with absolute revulsion. One mother who does not want her unborn child has an abortion, and from that unborn baby eggs are to be harvested to donate to another woman who wants a baby … ? Almost as horrifying is the idea of using similar tissue from dead women.
By the time the consultation and report had been concluded, however, and decisions had been taken by the HFEA, we were even more determined that CORE’s presence was absolutely essential as a counterbalance to the very existence of the HFEA. I could divert into hours of explanation as to the bias and undemocratic nature of the HFEA, but one example alone should suffice. In the early days anybody applying to the HFEA had to declare officially if they were a member of a pro-life group. Not surprisingly nobody from a pro-life perspective has ever been elected onto this body; in fact I do not believe anybody has ever even been called up for a first interview.
The HFEA conducted the consultation and issued a report. You have a page from that as well [handout 2]. The first thing CORE noted during the time frame of this consultation is that results were circulated in Scotland even before the deadline for submissions had been reached! Some responses would not therefore have been included.
But even if the time limits had been respected, it is extraordinary to think that a public consultation could be digested and decisions taken within a month of the closing date. These were our initial perplexities, but nothing to our justifiable rage when we analysed the conclusions reached by the HFEA.
Without going through the whole report in detail – although the bias of the document is blatantly obvious to anybody with the slightest interest in rhetoric – let us just look at page 2 of my handouts, in which the responses to the initial questions are tabled [handout 2].
This was CORE’s first experience of the HFEA consultation process, but it is a pattern which has been repeated over the years. Consultations on sex selection, storage of embryos, pre-implantation genetic diagnosis, welfare of children, cloning issues, follow a similar pattern; the questions are devised by the HFEA and the answers are analysed by them as well. Currently the HFEA is again consulting on egg donation and I would recommend that you all read the text and if possible respond, even though inevitably not much notice will be taken if your opinions are like mine.
For the most part the public is relatively sensible in its responses, but the decisions taken by the HFEA will not reflect in any meaningful way the position taken by the public. Whenever answers do not please the HFEA they are dismissed as representing a vociferous minority group of religious or pro-life contributors. Recently the HFEA even asked participants to identify themselves if they were pro-life. CORE wrote and asked them why were they asking for this information and what was their definition of pro-life as it is a word which does not appear in the dictionary.
2. More about the voice of the public. Let us leave the HFEA and move over to the Wellcome Trust, which in 1998 conducted an interesting social research study, entitled Public Perspectives on Human Cloning.
The Wellcome Trust is the world’s largest charity, involved in healthcare advances, public understanding of science, and promotion of biomedical developments. It would be accurate to say that they were at the time of this study already expressing enthusiasm for embryonic stem cell research. Their research project was aimed at informing the public by instructing them about the techniques and applications of cloning.
Their definition of the public excluded from the research and I quote, ‘Those holding strong personal beliefs about human life and medical interventions, and members of pressure groups taking such views’. Those on the other hand who were invited to participate included ‘Women in late 30s and 40s with no children, Women who have lost a baby or a young child, Lesbians, Women in 20s and 30s with no children – attempting unsuccessfully to conceive for a least six months’.
What was extraordinary with the Wellcome Trust project, however, was that despite handpicking their research group, giving them technical information about cloning from a biased perspective, hyping the potential value of embryonic stem cells, not mentioning alternative ethically sourced stem cells, and so on – despite the singular lack of objectivity in the project, the conclusions from their panels went counter to the expectations of the Wellcome Trust scientists.
The scientists had tried hard to convince their audience that there were two distinct and separate kinds of cloning, one for reproducing a human being and the other for beneficial medical therapies. It was at this time that the weasel term ‘therapeutic cloning’ came into the vocabulary and a concerted effort was made to convince the public of its virtues.
In time I think the public at large was bamboozled by misinformation in this field, especially when emotional games were played with patients suffering from Parkinson’s and Alzheimer’s, and of course poor Christopher Reeve in a wheelchair. But extraordinarily the selected audience of the Wellcome Trust were not taken in, suggesting that with more one-to-one communication the public can get its head around even complicated science, and untangle the hype. Cloning per se was consistently rejected by all but a handful of participants, and doubts were actually raised about the term ‘therapeutic’.
The participants also expressed concern about the regulation of scientific research and had a cynical view of scientists’ motives. They also believed that information was being withheld from the public. This was obviously not what the Wellcome Trust expected as an outcome of their social research. I can vouch absolutely for the dismay of the Wellcome Trust group, which included Robin Lovell-Badge who continues to be at the forefront of the cloning debate, because I was at the Trust when similar results came through from a Parliamentary debate. The attitude they adopted was not, ‘Could the public be instinctively right?; Are we listening enough to them?’, but rather, ‘Why are we not managing to convince them?’.
3. I want next to turn to another key player in the cloning debate, the media, and give you a few brief reflections on their role over the last years. Whilst the public showed a just degree of scepticism even when manipulated by the Wellcome Trust, they were far more vulnerable when it came to the media.
Looking through my files on human cloning I found a Daily Mail photo showing (allegedly) the first cloned human embryo. The paper is dated 17 June 1999. So just three years after Dolly the sheep was cloned, a human embryo was created and developed to the twelfth day. This is the claim made by the scientific laboratory involved (Advanced Cell Technology). However the claims have been widely challenged and dismissed by most serious scientists worldwide, and significantly nobody has ever replicated such a success. Last year’s South Korean claims to have cloned human embryos were also disproved, in great clouds of scandal, having first been lauded the length and breadth of the planet.
So in the current cloning stakes we are really only left with research from Newcastle University under the Stojkovic leadership, claiming to have taken three cloned embryos to cleavage stage, and one to blastocyst day five. The cells used in the nuclear transfer process were embryonic stem cells rather than somatic stem cells, and the research was published in a minor journal and again has not been replicated. A handful of rumours about other successes have not been substantiated by evidence. Whatever one thinks about the ethics of human cloning, the technical process is turning out to be very difficult indeed.
Curiously the same lab and the very same scientist, Robert Lanza, responsible for the Daily Mail front-page claims, were again making grandiose assertions just a few weeks ago. They said they had derived embryonic stem cells from live embryos without destroying the life of the embryo in the process. It was stated triumphantly that during an IVF process known as preimplantation genetic diagnosis, when cells are removed from embryos for diagnostic purposes, the same biopsied cells can be used to develop stem cell lines. Lanza claimed that he had actually achieved this. The august scientific journal Nature got very excited and press releases were soon whizzing around the world. Headlines claimed that an ethical solution had been finally reached to satisfy the concerns of the various pro-life interests.
I do not know if any of you followed this particular story but very soon it was being analysed by sceptics on our side and they proved that the photos accompanying the article in Nature did not relate to any experiment that the Lanza team had actually performed; that far from saving the lives of the embryos they had used, all sixteen had died in the process; and that ninety-one cells had been taken from them, not one cell per embryo as stated. The success rate of 2% stem cell derivation was extremely low by anybody’s standards, and the most that could be claimed was that proof of principle in some way had been established. German scientists were particularly outraged as they had really believed that an ethical way of deriving stem cells had been discovered.
Nature obviously had to behave responsibly and backtrack and correct the numerous inaccuracies in the report, but it was more difficult to get the mass media to retract.
There had been a fairly typical press reaction to the story – front-page coverage, international hype, little rigour in confirmation, very little scratching beneath the surface. It took considerable effort to convince journalists that we were right on this one. As usual the media preferred to pigeonhole our perspective as coming from an expected religious standpoint with no real scientific underpinning.
I remember on one occasion when Neil Scolding (Burden Professor of Clinical Neurosciences at Bristol University, and world expert in multiple sclerosis) was invited to present the case for adult stem cell technology to a private Parliamentary Meeting chaired by Jenny Tongue MP. Before she introduced him as a scientist she asked him to declare his faith affiliation.
Neil – who may be known to many of you as he is also the Chairman of the Linacre Centre – was absolutely outraged. Never in his life had he been asked such a question in such a context.
In my archive trawling to prepare this talk, I discovered a piece about a scientist I know very well, Professor David Prentice [handout 3]. At the time of an interview for The Daily Telegraph, David was working in adult stem cell research as well as teaching human biology at Indiana State University. The Telegraph journalist, Roger Highfield, currently considered the best in his field, conducted the interview. Throughout this article there is as much focus on David’s Christian faith as there is on critiquing his faultless science. I particularly like the photo accompanying the article which has the tagline: ‘Prof Prentice: Christian’.
Still on the subject of the press and its coverage of the cloning debate –
I attended a very interesting conference in May this year in Cambridge, entitled Talking Embryos, organised by the Centre for Research in the Arts, Social Sciences and Humanities (CRASSH). From their publicity material they claimed to be bringing together ‘respected academics from a variety of disciplines to discuss contemporary social debates surrounding the human embryo.’ They were seeking wide and diverse participation from interested parties for this conference, with the hope of sparking productive dialogue and lively debates unconstrained by traditional disciplinary boundaries.
Noble stuff. Never mind that there was not one true philosopher or theologian on the platform, and never mind that the only person talking genuinely on behalf of the embryo was John Harris, Professor of Bioethics at the University of Manchester. His presentation was entitled, ‘What the embryos would say if anyone bothered to ask them’. On behalf of the embryo he argued that they would be pleased to lay down their lives for the benefit of science.
For my part, however, the most interesting contribution to this event was a confession from Tim Radford, the esteemed science correspondent for The Guardian newspaper, a valid rival to the distinguished Roger Highfield.
Radford has since retired which may account for his willingness to reminisce so openly. His address was entitled, ‘Hope, Hype and Hair-raising: How the British press saw it’. The ‘it’ he was talking about was human cloning, and the hope, hype and hair-raising were often his own. He talked of the media’s duty to grab headlines and said that cloning came along as almost the greatest story of all time. ‘For once,’ he argued, ‘we (journalists that is) could make something happen. We had to believe in cloning. This was a story to be told in advance. How the science would turn out was up to the scientists to do, not us. We were full of wide-eyed optimism.’ He threw all kinds of phrases at the Cambridge audience – ‘new kind of fountain of youth’, ‘turning back the biological clock’, ‘medicine’s answer to the magic tablecloth’. I was enraged by this confession, as were a group of French and Swiss scientists sitting in front of me. They could not believe what they were hearing. I asked Radford, but it was a rhetorical rather than a real question, ‘Did you not feel you had any duty to truth?’.
The ‘magic tablecloth’ metaphor is most significant. It was not human cloning simply for the sake of pursuing knowledge, doing it because, ‘Why not, anything is worth trying’. No, the justification for it all was that through the process of cloning and the subsequent derivation of embryonic stem cells, every possible disease known to man, whether of genetic, degenerative or accidental origin could be cured with the miracle cells.
And gradually over the years that have followed, desperate humans from all walks of life, age groups, and persuasions have been sold this hype, and believe that this is the only way they will ever be cured of their various conditions. And that is exactly why journalists have such a duty to tell the absolute truth about stem cell therapies; real human beings have been corrupted by the false promise.
4. But now let us move into the political arena, into the world of government quangos and select committees. The media were not on their own in carelessly manipulating public opinion. We found ourselves quickly drawn into a battle where the very aggressive biotech industry and its supportive scientists and politicians attempted very deliberately in whatever way they could to convince Parliament and the public that cloning for stem cell research was necessary, desirable and a virtuous way forward.
In 1998 the HFEA and the Human Genetics Advisory Commission joined forces to look at cloning issues. This was the beginning of the use of the term ‘therapeutic’ cloning as opposed to ‘reproductive’ cloning. Time and time again you will read in official documents statements trying to suggest that cloning is not cloning if it is used for research purposes.
For your interest I have included in the papers for tonight a diagram from the Wellcome Trust project [handout 4], which shows reproduction versus therapeutic cloning. I suggest it is basically a ‘spot the difference exercise’. It should be very obvious that the only thing that changes in the two illustrations is the purpose to which the embryo is directed. If the cloned embryo is subsequently implanted in a womb this is an attempt at reproduction; if it is used for research then obviously its unfortunate destiny is death. What is an absolute scientific truth is that the creation of a human clone occurs in both cases. Not according to the Human Genetics Advisory Commission who declare that there are ‘two distinct meanings of cloning’; one of which does not involve the creation of a genetically identical individual.
We immediately, by the way, questioned the use of the word ‘therapeutic’. It certainly was not therapeutic for the embryo and any potential for therapy was (and still remains) hypothetical. Not even proof of principle of human cloning had been established at that time, and if one looked scrupulously at animal cloning results there were already reports of horrifying abnormalities in the offspring creeping into the veterinary journals. These monstruous outcomes continue to occur but rarely feature in any analysis of the therapeutic wonders of cloning.
In 1999 the Chief Medical Officer’s Expert Working Group on Therapeutic Cloning was set up. ‘Therapeutic’ had by now been formally adopted as terminology but in the report of the Chief Medical Officer’s group they decided that it might be better to call the process ‘CNR’, Cell Nuclear Replacement, instead and drop the word ‘cloning’ altogether! This is a typical example of the word games indulged in in this field. One tries to hide what is being done by using a highly technical term, preferably abbreviated – CNR, PGD, PGS, ICSI, or whatever. The motivation to move to CNR was, that it was felt that whenever the world ‘cloning’ was mentioned, the public conjured up images of horror (‘Boys from Brazil’, Hitlers by the hundred, and so on). Even with the dulcifying ‘therapeutic’ they still could not win over the masses.
So the CMO’s Report, issued in 2000 is entitled optimistically, Stem Cell Research: Medical Progress with Responsibility … Reviewing the potential of developments in stem cell research and cell nuclear replacement to benefit human health. The word cloning is almost deleted from the text.
There were thirteen participants in this group, only two of whom did not come from a scientific background. The eleven scientists had all expressed a positive attitude to research cloning and embryonic stem cell research before they were chosen for this committee. It would have been a miracle if they had concluded otherwise at the end of their deliberations! One of the non-scientific contributors was Prof. Alastair Campbell, expert in ethics in medicine at the University of Bristol. I have genuine respect for Prof. Campbell but I love quoting from his Medical Ethics (1998) where he discusses the composition of committees. I have included these quotes in [handout 5]. By these standards the Chief Medical Officer’s Committee would definitely not pass muster.
Only one and a half pages of the report are dedicated to stem cells derived from adult sources, and the information is vague and for the most part negative. Embryonic stem cells and cloning (CNR as it is called) gets the lion’s share of attention, with much enthusiasm and minimum focus on either the risk factors or the hypothetical nature of the claims.
The other Parliamentary big gun involved in the promotion of embryonic stem cells and cloning was of course The House of Lords Stem Cell Research Committee. There is not time to deconstruct that masterpiece of undemocratic practice, but anybody interested is welcome to ask for a copy of the critique CORE produced at the time. To summarise a few of the tricks involved:
1. Committee of Inquiry set up after the extended regulations to the law had already been passed, so it was little more than a token gesture.
2. The scientific advisor to the committee was himself involved in stem cell research and supportive of embryo research and the first visit of the committee was to his own laboratories. He effectively told them where to look and what to think.
3. Nobody involved in adult stem cell therapy and research was formally invited to give evidence. Only at the last moment thanks to Lord Alton insisting on sharing his own witness spot were some scientists from our perspective allowed to speak.
4. The only invited opposition was relentlessly religious. No secular ethical opposition was invited and no legal opinions of any kind were heard.
And so on …
5. I want to give you some quotes which show you another aspect of the cloning decade; that old chestnut the slippery slope. Remember how at the beginning they tried so hard to draw a big barrier between reproductive and research cloning ? Nobody was going to go down the reproductive path, were they? Here are quotes from Prof. Ian Wilmut, the acknowledged father of mammalian cloning, writing in his book titled modestly The Second Creation, and published in the year 2000.
‘… human cloning is very far from Keith’s and my own thoughts and ambitions, and we would rather that no one ever attempted it.’ (p16)
‘Human cloning has grabbed people’s imagination, but that is merely a diversion – and one we personally regret, and find distasteful.’ (p24)
‘Both of us see human cloning as a rather ugly diversion; as a medical procedure superfluous, and in general rather repugnant.’ (p291)
‘Human cloning is now on the spectrum of future possibilities – and we, more than anyone else, helped to put it there. We wish this were not the case.’ (p291)
‘It may seem crude but it is surely accurate to suggest that reproduction by cloning goes against our nature.’ (p323)
Is this the same Ian Wilmut who has applied for human cloning licences, including those for the creation of animal/human hybrids? Is it the same Wilmut who is quoted in New Scientist in February 2004, as saying:
‘While I am implacably opposed to reproductive cloning per se, I do envisage that producing cloned babies would be desirable under certain circumstances, such as preventing genetic disease.
Even if therapeutic cloning doesn’t make it to the clinic, there are other compelling reasons why we need to develop human cloning technology.’
I have given you a brief idea of the way the science of cloning and stem cells has been manipulated over the years – either mischievously or deliberately or from sheer sloppiness.
This attitude has been accompanied at the same time by aggressive politico-economic pressure to elevate the UK to the forefront of this kind of research. In 2005 in a letter to a conference in Brussels, Tony Blair promised a UK investment of £100m over a two-year period for stem cell development, specifically noting that ‘most agree that … to repair damaged or diseased cells’ research on the early embryo is essential.
The relentless exploitation of vulnerable people suffering from the multitude of conditions which are supposed to benefit from the use of the cloned human embryo, besides being unedifying, has obviously made our battle particularly difficult. Confronting journalists, scientists or politicians does not take huge courage, but when faced with a young man with a broken spine or a mother just diagnosed with multiple sclerosis – it is heartbreaking to have to tell them the truth about the stem cell debate.
The ethical position CORE takes is not a pragmatic one that cloning does not work and anyway there are alternatives. Even if cloning were the only way to cure disease, the deliberate sacrifice of one life to save another would still not be acceptable, and we will always defend this. But thankfully we are not in this trade-off position. There are many other ways to provide the therapies we need; some providing cures already, including stem cells from umbilical cord blood which have been in successful application for some twenty years. Anybody interested in knowing more about the ethical stem cell cures currently in use or under development is welcome to get in touch, but there is not time tonight to go into these in any detail.
Ironically, although we have not won the political, public or patient battle, we seem to have science on our side. As I stated earlier on, cloning is proving far more difficult than anybody imagined. The more we learn the more complicated the science appears to be, especially now that we have a more humble approach to epigenetic factors and are losing this facile concept of one gene equals one disease equals one potential cure.
I am also happy to report that some of the more rigorous embryonic stem cell proponents, including Jamie Thomson himself, are acknowledging that cures from embryonic stem cells are at best a very long way away, that cloning is unlikely to be the way forward, and that perhaps this whole line of approach needs rethinking.