Archive for category Disability
For various largely uninteresting reasons, I’ve not blogged lately. But then I came across this article on The Guardian website today, a for-and-against piece about mitochondria donation with an “against” argument from Peter Saunders that veers from irrelevant to flat out wrong. Let’s get started!
To begin with, this is not about finding a cure. It is about preventing people with mitrochondrial disease being born. These new technologies, even if they work, will do nothing for the thousands of people already suffering from these diseases, or for those who will be born with it in the future.
Now, here’s the first dodgy argument, one that I’m almost tempted to call a dog-whistle. Mitochondrial donations are not about “preventing people with mitrochondrial disease being born“, they’re about “preventing people being born with mitrochondrial disease”. Just look at how moving that phrase “being born” a few words to the right changed a factual statement about the procedure into a non-sequitur about abortion.
It’s of course true that unfortunately, this procedure will do nothing to help people that already have mitochondrial diseases – removing a mutation from the body is perhaps the most impossible thing in all of medicine – but that’s no argument against the procedure.
Also, Saunders claims that there is no need for the procedure when egg donation is already possible. Bear this in mind; it’ll come up again later.
Will it work? This technology uses similar “nuclear transfer” techniques to those used in “therapeutic cloning” for embryonic stem cells – which has thus far failed to deliver, and animal-human cytoplasmic hybrids (“cybrids”). [...] Yet cybrids are now a farcical footnote in history. They have not worked. Ironically, it was in that same act of parliament that provision for this new research was also made.
First of all, cybrids were legalised in 2008. 3-4 years is not that long a time in medical research, especially for research into slow-developing, long-term conditions like Alzheimers and Parkinsons. But I decided to have a look on Google Scholar, to see if cybrids were just a “farcical footnote”. Since 2008, there have been at least 362 papers about cytoplasmic hybrids, including 114 in the last year and a half or so. Some of these are papers exploring the ethics of the procedure, but an awful lot are detailing actual breakthroughs made using these cytoplasmic hybrids.
Embryonic stem cell research, being far more mature, is even more successful, with stem cells relieving paralysis in rats and the first clinical trials in humans showing promising results. Hardly a field that has “thus far failed to deliver”.
But even if he was telling the truth, and both fields had proved to be dead ends, this would still be irrelevant to mitochondrial donation. All it says is that mitochondrial donation uses one technique which is also used in stem cell research. As far as arguments go, this is up there with “vegetarians are evil because Hitler was a vegetarian”.
Is it safe? No. Each technique involves experimental reproductive cloning techniques and germline genetic engineering (that is, it affects the genes passed on to children) – both of which are highly controversial and potentially dangerous. Cloning by nuclear transfer has so far proved ineffective in humans and unsafe in other mammals with a large number of cloned individuals spontaneously aborting, and others suffering from physical abnormalities or limited lifespans.
Well, it’s good thing there’s no cloning involved with this technique, thus making that last sentence completely pointless scaremongering.
Also, as the Guardian noted last week, any changes, or unpredicted genetic problems (mutations) will be passed to future generations.
This is true, but the thing is: if a woman with a mitochondrial condition doesn’t use this technique and conceives a child naturally, there is a 100% guarantee that the mitochondrial defect will be passed to the future generation(s). The whole point of this method is to reduce the number of dangerous mutations being passed on.
Is it ethical? No. A large number of eggs will be needed, involving risky and invasive “harvesting” for women donors. How many debt-laden students or infertile women will be exploited by the offer of money, or free IVF treatment, in return for their eggs? How many embryos will be destroyed?
Ok, so, remember how earlier egg donation was a totally ethical alternative to mitochondrial donation? Well, with a deft sleight of hand Saunders is now claiming that egg donation is unethical!
There are concerns about paying people to donate body parts/fluids – it’s one of the most hotly discussed areas of bioethics – but in the UK, donors are not paid to donate eggs. They can have their travel and accommodation expenses paid (up to £750), but that’s it. There’s simply no room for the kind of exploitation Saunders worries about.
As far as I can tell, there is no difference to the egg donor between standard donation and mitochondria donation. The technique doesn’t necessarily require any extra eggs – though I suppose that depends on its success rate, which, since the technique is still experimental, no-one yet knows – and it doesn’t require any more embryo destruction that IVF or standard egg donation.
Then there are the issues of identity confusion for the children, who in effect will have three biological parents. Some mitochondrial diseases are much less serious than others. Once we have judged some affected babies not worthy of being conceived, where do we draw the line?
The mitochondria are, as the standard explanation goes, the little power stations that fuel each cell, and mitochondrial DNA has no effect on the wider body outside these power stations. A baby conceived by mitochondria donation is closer to having two parents than than a baby conceived by standard egg donation (since in mitochondria donation, all the DNA that affects what the baby actually looks like comes from the mother, not the donor), and if “identity confusion” is a concern, it’s odd that he’d endorse adoption either. And this technique does not mean any baby is “not worthy of being conceived” (unless he’s referring to the parents’ choice not to conceive naturally in the first place, in which case his argument is grosser and more unethical than I thought) – conception will still happen, it’s just that egg will be slightly modified first.
This debate is not being handled responsibly. The research scientists involved have financial and research-based vested interests, and getting the regulatory changes and research grants to continue and extend their work is dependent on them being able to sell their case to funders, the public and decision-makers.
I don’t think “I’m a research scientist and I want to continue my research” counts as a vested interest. It’s not like researchers are pretending their research isn’t dependent on this technique being allowed. I genuinely wonder how Saunders would prefer this debate be handled – he certainly never explains. Speaking of not handling debates responsibly, though neither Saunders nor The Guardian point this out, Saunders is the CEO of the Christian Medical Fellowship, a group that speaks out against a variety of medical techniques on religious grounds. As Mark Henderson said on Twitter, “Saunders makes many bad arguments vs mitochondrial transplants, omitting real reason he opposes: religion [...] Nothing wrong with opposing embryo research for religious reasons, but those who do should admit it, and that no evidence would convince them“
Let’s concentrate on finding treatments and providing better support for affected individuals, rather than spending limited health resources on unethical, risky and highly uncertain hi-tech solutions that will most likely never deliver.
We already know that, no matter how difficult mitochondrial donation is, finding a cure for mitochondrial disorders is far far harder still – and perhaps impossible with our current knowledge of genetics. A human body contains billions of cells, each one containing at least one and often tens or hundreds of mitochondria. Replacing or fixing all of them would be far more difficult than replacing the mitochondria in a single cell; if you want an efficient way of spending limited health resources (really, limited research resources – the funding for this research would not be directly linked to the NHS), donation research is surely a better route to take.
(I intended to, for balance reasons, point out any inaccuracies in the response from the Nuffield bioethicist arguing for the procedure, but it already seems pretty sensible and fair. Quelle surprise…)
Edit: Also thanks to Mark Henderson for pointing out that the research is being carried out at Newcastle University and entirely publicly funded by the Wellcome Trust and the Medical Research Council – there are no vested business interests involved either.
Even better, take the rest of your working life off.
Well, this is going to go well.
New figures show that under Labour the state was happy to pay your way, no questions asked.
Those claiming Disability Living Allowance soared from 2.1million in 2000 to 3.1million last year. The annual cost is now £12billion.
So, 3.1 million have “taken the rest of their working lives off” on Disability Living Allowance, and the state is “paying their way”? Well, no.
Disability Living Allowance is a supplementary payment, given to people with disabilities, which helps cover their care and mobility costs – in The Sun‘s case, they seem to be talking solely about the part of the DLA that covers care, since that’s where the 3.1 million figure comes from. There are different levels of DLA, depending on how severe the disability is, but even in the most severe case – someone who requires 24 hour care – the recipient would only get £73.60 a week, or about £3,800 a year, and on average, people only receive about £46.30 a week, or £2,400 a year (and 500,000 of that 3.1 million get nothing at all). No-one has “taken the rest of their working lives off” to live on £2,400 a year.
Incidentally, that part about the annual cost being £12 billion does seem to be including the cost of mobility allowance as well – the cost of the care part of the DLA is only £6.4 billion a year. It sounds like a lot, but like I say, it only actually works out at about £46 per person per week – not very much at all when you think about the cost of a private carer, or the earnings lost by a friend or family member who takes time off work to provide care.
Clearly The Sun must realise this – they complain that “Many of those handed up to £73.60 a week are laid low with ailments such as “alcohol abuse” or allergies“, clearly hoping that we won’t realise that £73.60 is not all that much money. There maybe people on DLA because of alcohol abuse or allergies, but in that case, it will be because their condition is so serious that they need part-or-full-time care. To qualify for even the lowest rate, you need to be either physically unable to cook for yourself or require care for part of the day. That’s more than just “someone who cannot get out of bed because their hangover is so bad“.
The Sun also says that “The vast majority of claimants have never been medically assessed“, which also isn’t true. Most people aren’t assessed by the Department of Work and Pensions, true, but in order to qualify for DLA, you need to have been diagnosed by your doctor. Everyone who is on DLA was assessed by their doctor.
Now at last the Government plans to order regular assessments to weed out the workshy.
It should make the economy look healthier by a few billion pounds a year.
That’s something not to be sneezed at.
Unpaid carers are worth about £87 billion to the economy per year, by reducing the strain on the NHS. Making it even harder for them is hardly going to make the economy any healthier.
Edit: The Express’s coverage is more or less the same, but with TPA quotes and the added bonus that they express incredulity that people with back pain might have trouble moving around. WHO’D HAVE THOUGHT?
(The Sun discards its “Sun Says” columns each day. I’ve preserved this one beneath the fold)