The Bewilderness

HFEA: saviour sons?

The passing of the new Human Fertilisation and Embryology Bill highlights the complexities of dealing with scientific advances through legislation. The Bill was used to tidy up existing laws and repealed the Reprodutive Cloning Act, which prohibited reproductive cloning in 2001. Now, the new Bill allows Parliament to allow reproductive cloning on a vote without the need to introduce further primary legislation:

The Department of Health, however, has accepted that the legislation contains a flaw that could in theory make it easier for the ban to be lifted. Dawn Primarolo, the Health Minister, insisted in a debate during the Bill's committee stage that the Government has no intention of using this new power under any circumstances. She added that as new regulations would have to be approved by Parliament, there will still be democratic safeguards against cloning....

A spokesman for the Department of Health said: “This power can only be used to permit the practice of curing an embryo or an egg of a serious mitochondrial disease. The Government will not use this power to permit the practice of reproductive cloning.”

It is unlikely that such a process will ever be passed, unless reproductive cloning is sanitised. The hysteria that surrounded its prohibition in 2001 seems distant now that we are dealing with some of the practical issues in embryology. Whether prohibition played its part, or whether the impracticality of using a technique with few practical uses , dampened the debate is unclear. The emotive language of 'flaw' and 'loophole' are readily used by the media, even though a safe technique for reproductive cloning could finally be made available for certain genetic illnesses. Thus, hysteria may finally be reduced to the status of a 'saviour son'.

HFEA: No braking research without breaking eggs

Lisa Jardine, professor of Renaissance Studies, at the Queen Mary, University of London, has become the new chairperson of the Human Fertilisation and Embryology Authority. This is an appointment of some importance after the furore over abortion, human-animal hybrids and 'saviour siblings'. The appointment has acquired a veneer of  the two cultures with  references to her humanist academic position and her scientific training.

Jardine describes the role in terms of its "ethical intensity", a focal point for the meeting of cutting edge science and moral argument. This is reflected in her focus upon the doctrinal difficulties of the Catholic Church with their argument that life begins at conception. Jardine opposes her own secular moral values to this roadblock and clearly supports the positive votes of the current Act. This is discussed with two constituencies in mind:

The HFEA has been on the defensive for some years, engaged in edgy battles with, on the one hand, clinicians and scientists who wanted to break new ground, and, on the other hand, an anxious but often under-informed public. Most of all, Jardine says, it is public discussion of where the science of life is taking us that is needed....

Although she is entranced by the science, the regulator must keep those who want to advance it in line with public opinion, as expressed by parliament. That means cracking the whip over a group of doctors and experimental scientists who are not always known for complying neatly. The HFEA is currently being sued by one famous fertility doctor.

The role of the HFEA under Jardine is reiterated here: policing the laws set down by Parliament and educating the public on the scientific benefits of this research. This is a positive agenda that fits Jardine's curriculum vitae, but the Guardian  picks up a vital confusion of parliamentary law and public opinion. The will of the majority is a tyranny and cannot form a policy principle if it overrides certain fundamental liberties on reproductive freedom, as we have seen in the past. Jardine's secular pragmatism goes some way to combatting this problem.

Yet, there is a conflict of interest in the role that the HFEA is supposed to undertake: of educating the public on new technologies, reflecting their opinions through some artificial consensus and policing research and institutions. The HFEA has been marginally successful in this balancing act, and may improve now that its educational role redresses the block that it was placing upon practices that had become widely accepted by the public.

HFEA bill passes

The Human Fertilisation and Embryological Authority bill was voted upon last night in the House of Commons. After some impassioned debate, the issues of human-animal embryos and 'saviour siblings' were voted upon in conscience. Both measures passed with the broad majority of the House. As expected, there was a strong cross-party alliance in favour and a stronger one against:

During three hours of debate, cross-party alliances were formed as MPs   discussed some of the most pressing issues of conscience for a political   generation.

An attempt by critics of embryo research, led by the senior Conservative   Edward Leigh, to ban the technique was defeated by 336 votes to 176, as many   Tory MPs on the front and backbenches sided with the Government plans.

A number of Labour MPs, among them many Catholics, lined up alongside the   majority of Conservatives seeking to block the move.

The arguments from both supporters and opponents were conducted in strongly moral terms. Supporters pointed out that the measures held the potential to ease suffering for a range of illnesses and the freedom to research should be protected, whilst opponents ranged from the 'yuck factor' to deeply held beliefs on the sanctity of life.

The Bill also went further than expected since there are no limitations on the types of hybrid that can be produced. This places Britain as an outlier in terms of biotechnological regulation:

Mark Simmonds, the shadow health minister, supported three hybrid embryos - cytoplasmic hybrids, human transgenic embryos, and chimeras - but he attempted to block true hybrids. These combine human gametes, either egg or sperm, with animal gametes, also either egg or sperm. "The true hybrid is not always at the human end of the spectrum. There is an ethical difference between a cell which is 99% human and one that is 50% human," he said.

His attempt to ban "true hybrids" was rejected by 286 votes to 223, a majority of 63. Tory MPs, who were given a free vote, were encouraged to support Simmonds. But George Osborne, the shadow chancellor, voted in favour of "true hybrids". An attempt by Simmonds to tighten the law on saviour siblings was also rejected.

Iain Dale provides an ill-defined statement of the 'yuck factor', which revolves around some sense of what is human and requires a sense of violation:

On human-animal hybrid embryos I have absolutely no hesitation in saying that I would vote against them. The whole concept fills me with a slight sense of horror. I always thought the concept of 'saviour siblings' must be something which involved a mutual support pact involving Wendy and Douglas Alexander, but it appears not. I have slightly more sympathy and understanding of this, but there is something about it which makes me profoundly uncomfortable. I accept that medical advances have brought untold joy to parents who might otherwise never have conceived, and further medical advances have saved untold hundreds of thousands of lives. And yet, I can't reconcile and inner belief I have that tampering with natural human science in this way is wrong. I don't have religious beliefs, but there's still part of me which agrees with religious teachings on this issue.

'Natural human science' does not exist, except in the minds of people like Leon Kass. Yet, this is a good example of attitudes that need to persuaded such measures are appropriate and beneficial, or that your beliefs do not extend to denying the rights of others. If this is a matter of conscience, then so is the right to deny yourself treatments that you shun because they are immoral.

Old battles and new opportunities

There is plenty of ammunition surrounding the second reading of the Human Fertilisation and Embryology Bill: a new study is published on, some might say, a timely basis, concluding that babies born prematurely between 20 and 24 weeks do not have a greater chance of survival despite technological progress. There are quite a few variables to take into account with such studies: the level of facilities, the causal factors underlying such births, etc. Not sure if this deserves the article that the Grauniad provides on the eve of a vote.

When the attitudes of MPs are examined, they tend to remain confused and undetermined. None have been vulnerable to the lobbying of various groups, and, apart from pro-life campaigning, there are no obvious faultlines:

The Guardian's survey suggests that MPs will not vote along party lines or in "pro-science" or "anti-science" camps. Many MPs said they would support one or two of the aspects of the bill on which they have a free vote, but not all of them.

Most of the contentious issues will be supported: saviour siblings, lesbian access to IVF and  animal -human hybrids. These positive outcomes attest to the diminution  of the 'yuck factor'  and a pervading yardstick of utility in assessing the advantages or disadvantages of these developments. 

The pro-life lobby has been most active in attempting to reduce the abortion limit from 24 to 20 weeks and confirming the need to have a father during IVF, a process that will discriminate against lesbians and single women. Ian Duncan Smith's invocation of social breakdown does not gel with the vision of two women poring over a catalogue. The conflation of social and biological is designed as an easy hit, denying certain people the right to have a child so that he can make a political point. Shameful.

Duncan Smith has recently spoken out on the issue of the importance of fatherhood and attacked the new bill for 'hammering a nail into the coffin of the traditional family'. Without fathers, boys join gangs and teenage girls become pregnant, he said.

But that claim was rejected by Gamble: 'This has nothing to do with the fertilisation bill. Most of the children he is referring are not the products of IVF. This is a simple attempt to discriminate against single women and lesbians.'

To sum up, the bill has renewed old battles. We do not see differentiation in terms of principle on the center ground although the efforts of pro-life activists obscure deeper faultlines. Given the choice between the alleviation of suffering and the strange sympathies of a small minority, MPs will opt for the compromise by which this muddling policy has achieved its notable successes. If the Pope calls the result evil, then we know that the right decision was taken.

Religious-secular hybrid dies on press release

The news that animal-hybrid embryos were created at Newcastle University met with condemnation with pro-life campaigners. Their language is apposite: designed to acquire the attention of the media using methods that they condemn scientists for. Yet, when you look at the soundbite, the death of the embroys is noted as significant. If life begins at conception, then death is significant. The death of the embryos becomes a mark of moral condemnation.

'This is     lamentable headline grabbing not proper scientific behaviour. It     does Newcastle University no credit whatsoever. The most significant     line in the report is that the animal-human embryos didn't survive.'

A reading of the Telegraph article notes that the news was announced at a British Council meeting in Israel and was then released to the media, confirming the result of an experiment. Whilst the spokesman for Newcastle University and other scientists quoted take a cautious view of the research, with a reliance upon peer review, opposition to the experiments accuse Newcastle of 'science by press release'.

Dr David King of the pressure group Human Genetics Alert, says:     "For anyone who understands basic biology, it is no surprise     that these embryos died at such an early stage. Cloning is     inefficient precisely because it is so unnatural, and by mixing     species it becomes even more unnatural and unlikely to succeed.

"The public has been grossly misled by the hype that this is     vital medical research. Even if stem cells were ever to be produced,     like cloned animals, they would have so many errors of their     metabolism that they would produce completely misleading data. This     research is a complete waste of taxpayers' money. "

"The timing of the announcement of this non-result, just as     Parliament is about to debate legislation on hybrid embryos is     typical of the Newcastle lab's tendency to manipulate the media     and politicians. The BBC has been duped into making this a news     story, which will then be used to persuade politicians that     animal-human hybrids are promising science. This is     'science-by-press-release' which breaks all the scientific     community's ethical guidelines."

For secular groups, the basis of the attack focuses upon the science and ethics. The research programme is condemned for its lack of utility, anticipating a woeful result (although the support of two universities undermines the credibility of this accusation). The publicity atached to the announcement is judged by a self-appointed spokesman against the ethics of the scientific community - a professional betrayal. Finally, in a political calculus, the research is criticised for wasting taxpayers' money.

Criticism of the reaserach from a pro-life basis speaks a language that few people in Britain will engage with. Even in soundbites, their concerns are simply unread. The secularists take a cannier approach, using popular concerns on tax, and debating the research and ethics of science to provide themselves with a base for professional credibility. They act as spokesmen, but they also attempt to co-opt the general population, with their invocation of "basic biology". This appeal to amateurism is designed to implicitly point at a divide between an aloof scientific academia and a scientifically literate populace. As a division, it fails due to the lack of a popular base.

Opposition to this research is incoherent and unnecessary; its ideological and religious roots cloaked in self-serving rhetoric to appeal beyond the base; an appeal that clearly fails.

The thinning genetic line

There could be the propects of the first genetically altered embryos being created in the next three years. In the march towards curing another genetic disease, embryos could be created with three parents:

Prof Doug Turnbull's team at the University of Newcastle hopes to combine IVF with cell surgery to wipe out diseases caused by the equivalent of faulty "batteries" in cells, called mitochondria, that affect one person in every 6,500 with a constellation of conditions, from fatal liver failure, stroke-like episodes, blindness, mental retardation with intractable epilepsy, muscle weakness, diabetes and deafness. Hundreds of families in Britain suffer from these incurable diseases.

"He has actually done the procedure in human cells and found it perfectly feasible," says Lord Walton. "And in mice the embryos developed perfectly normally after this procedure."

The team presented preliminary work to the Medical Research Council Centre for Neuromuscular Diseases, London, at the end of last week and shown that it works in experiments with abnormal embryos left over from fertility treatment.

This is a very good example of how curing disease will result in genetic change.However, this takes us a step closer to enhancement without crossing the line. With medicine as the justification, no yck factor will arise as 'children' always come first except to the pro-life campaigners who place their faith above suffering.

Consent is a plaything of the state

The debate on 'presumed consent' for organ donors sits ill with the government's more burdensome rules on consent for the use of tissue samples. If a scientist wishes to use tissue samples, he must always require the consent of the donor, especially if they are used in stem cell research and for cloning. Scientists have protested that this will have a detrimental effect on research:

A group of 29 biomedical scientists and administrators, including three winners of the Nobel Prize, wrote to The Times on Monday to raise their objections to the proposed measures, which they said would hold back vital sudies into diseases such as muscular dystrophy, Parkinson’s and diabetes.

As the Bill stands, it would require all tissue used to create cloned embryonic stem cells to have the explicit consent of the donor. This would deny scientists access to valuable banks of tissue from patients who had donated it for medical research but who had not explicitly given their consent for experiments involving cloning.

The Government is unwilling to move very far towards the position of the biomedical sciences. When they are criticised for not predicting the predictable result of their own laws, they are inclined to reach for a protective catch-all:

Baroness Royall added that the Government had also received advice from its lawyers that specific consent was essential under the provisions of the Human Rights Act as it relates to family’s and people’s private lives.

She gave a commitment “to take this [legislation] back to see if there is a way forward that is compatible with the Human Rights Act”.

The rational response is provided:

Lord Patel said: “I don’t understand what human rights section forbids the use of tissue samples, cells and cell lines collected over many years from dying patients who probably died of these diseases, and who would have wished while dying that by donating their tissue it might some day benefit others.”

Lord Patel added that children with some muscle-wasting, brain and immune system disorders had a life expectancy of only a few years and that the proposed law would exclude these conditions from the diseases that would potential benefits from stem-cell research.

So, we know understand that the Human Rights Act is utilised to avoid the embarrassment of U-turns on the part of government: much more important than the actual research, of course. This allows the government to intervene in the private wishes of doners, since their wishes obviously need to be 'clarified'. Yet this does not prevent the state assuming that my organs need to be 'harvested'. Is this not  an inconsistency in my hooman rights?

Perfect storn in HFEA's Teacup

It is unclear why some decisions undertaken by the Human Fertilisation and Embryological Authority (HFEA) acquire far more attention from the public than others. One issue that merited public interest was the creation of what the media referred to as human-animal hybrids or chimera. These are embryos grown in cow egg cells rather than human egg cells. This allows embryological study to continue despite a shortage of human egg cells.

When the HFEA inclined towards prohibition of these chimera, perhaps following the lead from other respected regulators, such as Australia, they were besieged by a biotechnology lobby. After kicking the ball into the grass through the device for a consultation, the HFEA found that the 'yuck factor' was not as strong as the moral support for research into diseases. The acceptance of biotechnological research in the UK has not faltered.

Indications followed that their whole attitude may have changed:

The HFEA regulators deferred a decision on other types of human-animal embryos, such as "true hybrids," created by the fusion of a human sperm and an animal egg, and "human chimeras," where human cells are injected into animal embryos.

This was because there was no evidence that scientists are at present considering using such hybrids in research.

Regulatory conservatism may be checked by public outcry, commercial lobbying and the use of consultations: the perfect storm that transhumanists can contribute to.   

Rate runs into trouble

As expected, the Parliamentary Committee rejected the rational for combining the HFEA and the HTA. They had a number of recommendations and criticisms, including a free vote in Parliament for chimera hybrids and a permanent body on bioethics. The regulatory merger was rejected as a retrograde step that would not bring any benefits to the accepted regulatory regime.

The Committee also recommends a free vote on the issue of whether birth certificates should include information on whether the birth was due to sperm or egg donation. The report says that since the authorities are likely involved in such an assisted conception they are effectively "colluding in a deception" if that information is not included on certificates. It asks the government to look again at this issue.

Gardener [Sir Richard Gardner, head of the Royal Society's stem cell working group] said: "It is essential that both the House of Commons and House of Lords are informed of all aspects of the debate on the creation of human-animal embryos prior to the proposed free-vote. Evidence from science organisations, research groups, patient groups and public opinion will be crucial to construct sound legislation."

The Committee's report further calls for Parliament set up a joint committee on bioethics to advise politicians in future.

Mark Henderson in the Times has further criticisms of the proposal, especially the reduction in expertise available and the cost savings that take eight years to achieve, if at all. Thalia, of the gigantic pregnancy blogs communities, talks on the issue of altering birth certificates to document donated gametes

Not Proven: Rate

The House of Lords is anticipated to report on the Human Tissues and Embryo Bill. They are joining the overwhelming professional opposition to the merger of the Human Fertilisation and Embryological Authority and Human Tissues Authority. The fears are that the loss of expertise and upheaval would have a detrimental effect on medical research and regulation of fertility treatment. The professionals, perhaps promoting regulatory capture, state that the case for the Regulatory Authority on Tissues and Embryos (Rate) is not made.

The House of Lords also wishes to liberalise the proposals on creating chimeras.

The report is also understood to be sympathetic to scientists’ concerns that a proposed ban on the creation of certain kinds of human-animal embryo is excessive.

The Government has already drawn back from its original intention of blocking all such research, which can be useful for making stem-cell models for studying human diseases. The draft Bill now permits some interspecies embryos, but still prohibits “true hybrids”, created by fertilising animal eggs with human sperm or vice versa.

Although no research groups in Britain are proposing such work, many argue that it would be wrong to ban it through primary legislation, as valuable uses could emerge unexpectedly.

Whilst this is a welcome move to remove a restriction from stem-cell research, the principle of regulation rather than political participation is not valid. Without political support, such research may be curtailed and it is necessary that radical research programmes are permitted through the political process. Chimeras are not radical except in the eyes of the life movement.