Yes it’s me again, but at risk of overkill an article by Lib Con contributor, Sarah Ismail, at Same Difference ( spotted earlier via the Google links feed in Lib Con’s backend) deserves a comment or two if only as a warning to be very careful with anything you read in the right-wing press in relation to tomorrow’s debate on the Human Fertilisation and Embryology Bill.

No, it’s not abortion this time, but provisions in the bill dealing with consent when collecting human genetic material for use in stem cell research in which admixed human/animal embryos will be used, and to set the scene I’ll allow Sarah to explain her concerns:

My friends over at the mainstream blog Liberal Conspiracy have been debating the Human Fertilisation and Embryology Bill for months. They were mostly concerned with the section of this potential new law that deals with abortion rights. This time, I’m more concerned with a new amendment that will, if passed when MPs vote on the Bill on Wednesday, allow tissue to be used from people who lack the “mental capacity” to give consent.

This list includes children, whose parents would be allowed to give consent on their behalf, but I am going to focus on what this means for people with learning disabilities, or for those who have developed diseases like Alzheimer’s.

The Bill has always been controversial, but from the start, its defenders have stressed the importance of gaining consent from anyone whose tissue will be used to form human/animal hybrid embryos. However, the possible amendment that has now been revealed throws doubt over their assurances.

Under the amendment, if a person was deemed unable to give consent their carer would make a decision on their behalf. If the person did not have a carer, researchers would nominate a person to make the judgment.

Okay, having looked at the relevant section of the Bill (schedule 3, paragraphs 14-18) this is complex issue and Sarah cannot be at all faulted for raising concerns about the intent behind these provisions, which were agreed at the committee stage of the bill, but I have to say that its not quite what it might appear at first sight and it certainly not what the Sunday Telegraph have been trying to suggest in this article…

It can now be revealed that a Government amendment, agreed after the main parliamentary debates, would allow tissue to be used from people who lack the “mental capacity” to give consent, children whose parents give permission, and anyone who has previously donated samples to hospitals for medical research but can no longer be traced.

Medical ethics experts and religious leaders are furious that the provisions, which they say ride roughshod over basic human rights, have already been agreed by an all-party committee of 17 MPs charged with scrutinising the bill, without any public debate or discussion in the main chambers of Parliament.

The first rule of any article dealing with the HF&E bill that appears in the Telegraph, Mail or Express has to be to check out the background of any ‘experts’ the article cites as opposing or raising concerns about the content of the bill and sure enough, the Telegraph namechecks two ‘medical ethics experts’, Prof David Jones, director of the impressively named “Centre for Bioethics and Emerging Technologies at St Mary’s University College”, London and Prof John Haldane, director of the Centre for Philosophy and Public Affairs at the University of St Andrews.

Haldane is the easy one to track down – to give his full name and title we’re looking at John Joseph Haldane KHS (Knight of the Equestrian Order of the Holy Sepulcre of Jerusalem), Papal Advisor to the Vatican and the leading figure in the Analytical Thomist movement – in other words, just about as high-powered and heavy duty a Roman Catholic philosopher/theologian as you’re ever likely to run into and, consequently, anything but an unbiased commentator on the HF&E bill, which the Roman Catholic Church opposes in its entirety.

David Jones took a touch more work to pin down, but – again – to give the full skinny the full name is David Albert Jones and he seems to have gone up in the world a touch since the public seminar he attended in 2007, which was arranged by the Commons’ Science and Technology Committee to discuss the governments proposed revisions to the 1990 Human Fertilisation and Embryology Act, when he was only Dr David Jones, Academic Director of the School of Theology, Philosophy, and History at St Mary’s University College, Twickenham (not London, as the Telegraph indicates), a title which rather gives the game away, especially when you follow up that information and discover that St Mary’s is the oldest Roman Catholic College in the UK and only began awarding its own degrees in 2007, prior to which its awarding body was the University of Surrey, or Battersea College of Technology as it was up until it moved to Guildford and got airs and graces in 1966.

(And in case you’re wondering, that last little exercise in academic snarkery is no more than a dig at the Torygraph for calling the place “St Mary’s University College, London” which many would take to imply an [non-existent] association with University College, London, one of the top Universities in the UK)

So that’s a straight two-fer – two ‘experts’ in Medical Ethics, both of whom turn out to be Roman Catholic academics cum philosophers cum theologians…

…. a little factoid that the Telegraph neglects to mention its readers.

Notwithstanding the Telegraph’s omissions, the concerns raised by Sarah deserve to be taken seriously, so to clarify the science to start with…

When we talk about taking tissue samples from anyone for use in creating admixed cytoplasmic hybrid embryos for research purposes the kind of tissue we’re talking about are skin cells – no needles, biopsies or invasive procedures, just wipe a swab inside the mouth a la CSI and away you go.

No one will, therefore, be subjected to an invasive medical procedure with or without their consent under the provisions of this bill,

Now, when we come to the question of researchers obtaining samples from individual who lack the capacity to give consent in their own right, not only does this possibility come with a whole shedload of strings attached which, taken together, add up to ‘only if there’s no other option open’ but you can safely forget about these provisions being applied to individuals with relatively common degenerative conditions like Alzheimer’s or Parkinson’s disease where there is no particular shortage of candidate ’tissue donors’ who retain the capacity to give their consent. In the case of these conditions, there is no need whatsoever for researchers to even apply to obtain tissue samples from individuals who’re incapable of giving consent, not when there’s plenty of lucid, freely consenting potential donors out there who can provide the necessary genetic material.

Where the ability to obtain samples from individuals whose cognitive impairments render them incapable of giving consent may come into play is if a researcher turns their attention to any one of a number of ‘Cinderella disorders’, the kind of rare genetic conditions which result in individuals being born with seriously diminished cognitive capabilities of a kind that will mean that they will never be able to give consent in their own right or those where the incidence of the condition is so low that you may well be able to count the number of people in world with the condition using only those appendages you can count with without removing your shoes and socks.

Then, and almost certainly, only then would a researcher be in a position to make a reasonable case for being permitted to obtain skin cells without the donors express consent, one solid enough to get past the licencing authority and an ethics committee.

Quite honestly, the kind of situation where skin cells may be obtained without an individuals consent will be where the incidence of the condition/disorder is so low that not even the most speculative biotech start-up would show an interest in researching the condition as there will never be any profit in it for them, where the impairments are so severe that you wouldn’t have wished the condition on Saddam Hussein and where, even today, individuals stand good chance of being institutionalised for their entire life, and where the prognosis is so poor that the prospect of gaining the individuals consent is never an issue as surviving long enough to become a teenager is considered a damn good innings.

I fully appreciate Sarah’s general point about the importance of consent however I do disagree with the suggestion that the provisions in this bill may have the effect of sweeping away 25 years of progress in medical ethics and the hard work of the disability rights movement because these provisions are there only to be used in the most exceptional situations where there is no other viable option open to researchers and where, without the option of gaining a sample of skin cells for use in research – which can only be for research into, and/or the development of treatments and care regimes for, the specific condition the individual has (or a very closely related condition) – no substantive research would be possible.

Even without the Telegraph’s manifest dishonesty in failing to disclose the fact that both of its ‘medical ethics experts’ are Roman Catholic theologians and, therefore, doctrinally opposed to the creation of admixed cytoplasmic hybrid embryos under any circumstances – and opposed, indeed, to more of less the entire content of the HF&E bill – there is less to be concerned about than many may think, but the issues are complex and although I’m in the fortunate position of having had a neuropsychology lecturer whose specialist field was Alzheimer’s (and the benefit of several debates on the finer points of research ethics over a pint or two in the Psychology department’s local to help me make sense of all this) I can see how and why this proposal does create significant concerns, concerns that the government should address.

That said, even though the safeguards seem solid on paper, as far as I can see, questions remains as to how successfully they’ll operate in practice and with that in mind the one thing I can think of that might help to allay Sarah’s entirely legitimate concerns would be the inclusion of one of more individuals from the field of disability rights on the licensing authority responsible for overseeing this research, someone with a specific remit to speak for those who cannot speak for themselves.

That’s not too much to ask, I think – let’s hope that the government are listening.

About the author
'Unity' is a regular contributor to Liberal Conspiracy. He also blogs at Ministry of Truth.
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