UK decision to trial three parent embryos for mitochondrial disease ‘both premature and ill-conceived’ (Nature Magazine)

Christian Medical Fellowship has recently published a paper on ‘three parent embryos for mitochondrial disease’ which was strongly critical of this new technology on both theological and scientific grounds. 

This followed submissions that we made on the issue to both the Human Fertilisation and Embryology Authority (HFEA) and the Nuffield Council.

I have also argued on this blog that the technique involved is unsafe, unethical and unnecessary (see here, here, hereand here).

I was therefore most interested to see these same views expressed this week an article in Naturearguing that the UK’s decision to trial the technique is ‘both premature and ill-conceived’.

Marcy Darnovsky (pictured) is executive director of the Center for Genetics and Society in Berkeley, California. In an article titled ‘A slippery slope to germline modification’ she points out that ‘those opposed to green-lighting mitochondrial replacement have been described in some quarters as religious objectors, against all types of IVF’.

However, she says, ‘many secular and actively pro-choice scientists, bioethi­cists and women’s-health advocates have voiced grave and detailed concerns about the safety and utility of mitochondrial replacement, and about authorizing the intentional genetic modification of children and their descendants.’

Were the United Kingdom to grant a regulatory go-ahead later this year, she argues, it would unilaterally cross ‘a legal and ethical line’ observed by the entire international community that ‘genetic-engineering tools’ should not be used ‘to modify gametes or early embryos and so manipulate the characteristics of future children’.

Darnovsky is very clear that ‘mitochondrial-replacement procedures would constitute ger­mline modification’.

She calls claims that such therapy would not affect a person’s identity ‘scientifically dubious’  and warns that ‘the permissive record of the UK regulatory authorities’ raises the prospect that inheritable mitochondrial changes would be used as a ‘door-opening wedge towards full-out germline manipulation, putting a high-tech eugenic social dynamic into play’.

To the claim that mitochondrial techniques would save lives, she points out that ‘these women have much safer alternatives, including pre-implantation genetic diagnosis and the use of third-party eggs with conventional IVF’.

She questions the HFEA’s claims that 1 in 200 children is born each year with a form of mitochondrial disease and the media’s uncritical acceptance of this figure, pointing out that the number is ‘more like 1 in 5,000’ (R. H. Haas et al. Pediatrics 120;1326–1333; 2007).

In addition she notes that among that much smaller group, a significant majority of cases involve mutations in nuclear as well as in mito­chondrial DNA, and so could not be helped by mitochondrial replacement.

Safety, she adds is ‘unproven’ and the results of animal trials are ‘far from reassuring’. Her overall assessment?

‘The question raised by these proposals is whether a risky technique, which would at best benefit a small number of women, justifies shred­ding a global agreement with profound significance for the human future. We need a moratorium on procedures based on human germline modification while that question is widely and fairly considered.’

Genuine concerns about this new mitochondrial technology have been swept aside in Britain in the headlong rush to push the scientific boundaries. But in many countries around and the world, and by commentators from both secular and faith based scientific backgrounds, Britain is viewed as rogue state in this area of research.

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Three parent embryos for mitochondrial disease – unsafe, unethical and unnecessary

Britain is planning to become the first country in the world to offer controversial ‘three-parent’ fertility treatments to families who want to avoid passing on mitochondrial diseases to their children.

The BBC reports this morning on the new techniques which it is claimed will children born through 'three-person IVF' who would carry genetic material from each of three different people.

There are about 50 known mitochondrial diseases (MCDs), which are passed on in genes coded by mitochondrial (as opposed to nuclear) DNA. They range hugely in severity, but for most there is presently no cure and little other than supportive treatment.

It is therefore understandable that scientists and affected families want research into these two related ‘three-parent embryo’ techniques (pronuclear transfer and maternal spindle transfer) to go ahead. But there are good reasons for caution.

This is not about finding a cure. It is about preventing people with MCD being born. We need first to be clear that these new technologies, even if they are eventually shown to work, will do nothing for the thousands of people already suffering from mitochondrial disease or for those who will be born with it in the future.

There are also already some alternative solutions available for affected couples including adoption and egg donation.

But apart from this I’m left with four big questions.

Is it safe? This is far from established. Each technique involves experimental reproductive cloning techniques and germline genetic engineering, both highly controversial and potentially very 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 many others suffering from physical abnormalities or limited lifespans. Also, any changes, or unpredicted genetic problems (mutations) will be passed to future generations. In general, the more manipulation needed, the higher the severity and frequency of problems in resulting embryos and fetuses.

Will it work? I am sceptical. 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’). The wild claims made about the therapeutic properties of ‘cybrids’ by the biotechnology industry, research scientists, patient interest groups and science journalists duped parliament into legalising and licensing animal human hybrid research in 2008. Few now will remember Gordon Brown’s empty promises in the Guardian on 18 May that year of ‘cybrids’ offering 'a profound opportunity to save and transform millions of lives' and his commitment to this research as 'an inherently moral endeavour that can save and improve the lives of thousands and over time millions of people'. That measure was supported in a heavily whipped vote as part of the Human Fertilisation and Embryology Bill, now the HFE Act. But ‘cybrids’ are now a farcical footnote in history. They have not worked and investors have voted with their feet. Ironically, it was in that same Act of Parliament, that provision for this new research was also made.

Is it ethical? No, there are huge ethical issues. A large number of human eggs will be needed for the research, involving ‘harvesting’ that is both risky and invasive for women donors. How many debt-laden students or desperate infertile women will be exploited and incentivised by being offered money or free IVF treatment in return for their eggs? How many thousands of human embryos will be destroyed? If it ever works, what issues of identity confusion will arise in children with effectively three biological parents? What does preventing those with mitochondrial disease being born say about how we value people already living with the condition? Where will this selection end? 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, and who should draw it?

Is the debate being handled responsibly? No. The research scientists involved have huge 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. Hence their desire for attention-grabbing media headlines and heart rending (but highly extreme and unusual) human interest stories that are often selective about what facts they present.

It must be tempting for politicians to make promises of ‘miracle cures’ in years to come which no one may remember. But I suspect it is much more about media hype than real hope.

This new push is being driven as much by prestige for government, research grants for scientists and profits for biotechnology company shareholders as anything else.

Let’s keep a cool head and instead concentrate on finding real treatments and providing better support for affected individuals and their families rather than spending limited health resources on unethical, risky and highly uncertain high tech solutions that will most likely never deliver. 

 (See BBC, Guardian, Times(£), Independent, Daily Mail and Telegraph).

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Three-parent embryos for mitochondrial disease? Twelve reasons for caution

The media is buzzing today with the news that Britain is planning to become the first country in the world to offer controversial ‘three-parent’ fertility treatments to families who want to avoid passing on mitochondrial diseases to their children (See BBC, Guardian, Times(£), Independent, Daily Mail and Telegraph).

The Department of Health announced yesterday that it would draw up draft guidelines to allow fertility clinics to offer the technique. The proposed guidelines would be released for public comment later this year, and Parliament would vote on a final version in 2014.

Scientists are currently researching two main three-parent IVF techniques. The first, being developed at Britain's Newcastle University and known as pronuclear transfer (PNT), swaps DNA between two fertilised human eggs. Another, called maternal spindle transfer (MST), swaps material between the mother's egg and a donor egg before fertilisation.

The BBC is heralding it as a ‘ground-breaking technique for preventing serious genetic disease’ and a ‘bold step for science and society’. Media reports are full today of reassurances that that mitochondrial DNA only accounts for 37 out of our 20,000 human genes and that this therefore is a small step that will be undertaken only under ‘strict safeguards’.

Most people accessing broadcast media will hear heart-rending accounts of affected families and will get the message that those opposing the move are Luddites and religious fundamentalists on the lunatic fringe.

But there are actually very good reasons we should not be going down this route. Here are just twelve for starters:

1. Even were this new technology to work (and there are huge questions about that) it would help only a very small handful of families and only a tiny fraction of those with mitochondrial disorders. One in 6,500 babies is born with mitochondrial disorder, about 200 per year in Britain. But only five to ten of these have conditions serious enough to merit this intervention.  The technology will not help the other 190 or the 12,000 people in the UK already living with mitochondrial disease.

2. Babies with serious mitochondrial disease will still be born as many families are not aware they are even carrying the abnormal genes until after the birth of at least one affected child. So this will largely be relevant only in preventing the birth of subsequent affected children to these families.

3. There are already alternative routes for these families to have unaffected children either through adoption or egg donation (although I personally have serious ethical misgivings about the latter).

4. Both techniques above involve cell nuclear replacement ‘cloning’ technology which has not yet been shown to work in humans. Whilst it appears to be effective in lower mammals like mice (see here) use of cloning techniques in higher mammals has resulted in huge numbers of miscarriages and the birth of large numbers of abnormal offspring. It took 273 attempts to produce Dolly the Sheep and she herself was abnormal dying early. There is a strong possibility that we may simply be trading mitochondrial disease for other abnormalities if babies are ever born after use of the technique.

5. It is likely that thousands of embryos will need to be produced and experimented upon in developing these techniques. Many, like me, who believe that human embryos are worthy of the utmost respect and protection as early individual human lives will argue that the end of producing an unaffected baby does not justify these means.

6. Tens of thousands of eggs will be required for this research. It is virtually certain that donated excess eggs from those undergoing fertility treatment will not be adequate to meet this demand and that egg harvesting from paid donors will be necessary leading to exploitation of  vulnerable women and exposure to  at times high-risk egg-harvesting procedures.

7. If successful, this research will cross an ethical and safety rubicon by allowing human germline genetic therapy for the first time in human history. The genes from the third parent will be passed on down the generations and will be impossible to remove from the family.

8. Any babies resulting from this therapy will have a third genetic parent whose details will not be on the birth certificate. This raises issues of personal and family identity for children born as a result of the technique and will inevitably lead to litigation involving parents wanting to assert maternity rights and children wanting information about all their genetic parents. Behind these cases will be the hugely emotive issues of custody and inheritance.

9. Allowing the technique will lead to further demands for extension in two ways. It will be argued that if we have accepted germ line therapy for mitochondrial disease then we should also accept it for genetic disorders transmitted by nuclear DNA and for less serious mitochondrial disorders. This will lead to pressure to extend the use of these techniques to other diseases. By backing germ line therapy even in these limited circumstances the UK is crossing a line that every other country which has considered the matter has concluded is too dangerous.

10. These techniques do not offer support or treatment to people affected with mitochondrial disease but rather are aimed at identifying these individuals at the embryo stage and genetically engineering them. There is more than an element of eugenic thinking here. Is it right for us to decide that lives with serious disability are not worth living to the extent that such people must be prevented being born or genetically altered to make them acceptable? This is a very dangerous slippery slope indeed.

11. In addition to genuine compassionate concerns about affected families there are very powerful ideological and financial vested interests in this field including research grants for scientists, profits for biotechnology companies and prestige for the British government. 

12. Hard cases do not necessarily make good law or policy. I remain deeply suspicious of the way this 'breakthrough' that will potentially help only a tiny number of people with a very limited number of conditions is being  foisted on the British public using emotive personal stories by an incredibly well-organised coalition of politicians, biotechnology companies, journalists, research scientists and patient interest groups without full consideration of the concerns like those above which many have expressed. I suspect there are much bigger agendas here that are not yet being fully disclosed. Are we, for example, seeing reproductive cloning and germ line therapy being deliberately smuggled in under the back door under the guise of compassion? The moving boundaries and mission creep we have seen with other IVF-related technologies should sound a huge note of caution for us. 

I have written previously on mitochondrial disease here, here, hereand here. Also see CMF’s official submissions to the HFEA and Nuffieldconsultations on this issue and  a recent blog post where we argue that these techniques are unsafe, unnecessary and unethical.  

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Three parent embryos for mitochondrial disease – unsafe, unethical and unnecessary

The BBC reports this morning on the launch of a new consultation by the HFEA (Human Fertilisation and Embryology Authority) into a new controversial fertility treatment which creates embryos from two women and one man to prevent life-threatening disorders.

Children born through 'three-person IVF' would contain some genetic material from each of three different people.

Ministers could change the law to make the technique legal after the results of the consultation are known.

There are about 50 known mitochondrial diseases (MCDs), which are passed on in genes coded by mitochondrial (as opposed to nuclear) DNA. They range hugely in severity, but for most there is presently no cure and little other than supportive treatment.

It is therefore understandable that scientists and affected families want research into these two related ‘three-parent embryo’ techniques (pronuclear transfer and maternal spindle transfer) to go ahead. But there are good reasons for caution.

This is not about finding a cure. It is about preventing people with MCD being born. We need first to be clear that these new technologies, even if they are eventually shown to work, will do nothing for the thousands of people already suffering from mitochondrial disease or for those who will be born with it in the future.

There are also already some alternative solutions available for affected couples including adoption and egg donation.

But apart from this I’m left with four big questions.

Is it safe? This is far from established. Each technique involves experimental reproductive cloning techniques and germline genetic engineering, both highly controversial and potentially very 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 many others suffering from physical abnormalities or limited lifespans. Also, any changes, or unpredicted genetic problems (mutations) will be passed to future generations. In general, the more manipulation needed, the higher the severity and frequency of problems in resulting embryos and fetuses.

Will it work? I am sceptical. 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’). The wild claims made about the therapeutic properties of ‘cybrids’ by the biotechnology industry, research scientists, patient interest groups and science journalists duped parliament into legalising and licensing animal human hybrid research in 2008. Few now will remember Gordon Brown’s empty promises in the Guardian on 18 May that year of ‘cybrids’ offering 'a profound opportunity to save and transform millions of lives' and his commitment to this research as 'an inherently moral endeavour that can save and improve the lives of thousands and over time millions of people'. That measure was supported in a heavily whipped vote as part of the Human Fertilisation and Embryology Bill, now the HFE Act. But ‘cybrids’ are now a farcical footnote in history. They have not worked and investors have voted with their feet. Ironically, it was in that same Act of Parliament, that provision for this new research was also made.

Is it ethical? No, there are huge ethical issues. A large number of human eggs will be needed for the research, involving ‘harvesting’ that is both risky and invasive for women donors. How many debt-laden students or desperate infertile women will be exploited and incentivised by being offered money or free IVF treatment in return for their eggs? How many thousands of human embryos will be destroyed? If it ever works, what issues of identity confusion will arise in children with effectively three biological parents? What does preventing those with mitochondrial disease being born say about how we value people already living with the condition? Where will this selection end? 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, and who should draw it?

Is the debate being handled responsibly? No. The research scientists involved have huge 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. Hence their desire for attention-grabbing media headlines and heart rending (but highly extreme and unusual) human interest stories that are often selective about what facts they present.

It must be tempting for politicians to make promises of ‘miracle cures’ in years to come which no one may remember. But I suspect it is much more about media hype than real hope.

This new push is being driven as much by prestige for government, research grants for scientists and profits for biotechnology company shareholders as anything else.

Let’s keep a cool head and instead concentrate on finding real treatments and providing better support for affected individuals and their families rather than spending limited health resources on unethical, risky and highly uncertain high tech solutions that will most likely never deliver.

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Three parent embryos for mitochondrial disease – more media hype than real hope

The BBC reports this morning that a controversial fertility treatment which creates embryos from two women and one man to prevent life-threatening disorders is ethical. Children born through 'three-person IVF' would contain some genetic material from three people.

The UK's Nuffield Council on Bioethics has said the technique could free children from 'very severe and debilitating disorders'.

There are about 50 known mitochondrial diseases, which are passed on in genes coded by mitochondrial (as opposed to nuclear) DNA. They range hugely in severity, but for most there is presently no cure and little other than supportive treatment.

It is therefore understandable that scientists and affected families want research into these two related ‘three-parent embryo’ techniques (pronuclear transfer and maternal spindle transfer) to go ahead. But there are good reasons for caution.

This is not about finding a cure. It is about preventing people with MCD being born. We need first to be clear that these new technologies, even if they are eventually shown to work, will do nothing for the thousands of people already suffering from mitochondrial disease or for those who will be born with it in the future.

There are also already some alternative solutions available for affected couples including adoption and egg donation.

But apart from this I’m left with four big questions.

Will it work? I am sceptical. 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’). The wild claims made about the therapeutic properties of ‘cybrids’ by the biotechnology industry, research scientists, patient interest groups and science journalists duped parliament into legalising and licensing animal human hybrid research in 2008. Few now will remember Gordon Brown’s empty promises in the Guardian on 18 May that year of ‘cybrids’ offering 'a profound opportunity to save and transform millions of lives' and his commitment to this research as 'an inherently moral endeavour that can save and improve the lives of thousands and over time millions of people'. That measure was supported in a heavily whipped vote as part of the Human Fertilisation and Embryology Bill, now the HFE Act. But ‘cybrids’ are now a farcical footnote in history. They have not worked and investors have voted with their feet. Ironically, it was in that same Act of Parliament, that provision for this new research was also made.

Is it safe? No, each technique involves experimental reproductive cloning techniques and germline genetic engineering, both highly controversial and potentially very 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 many others suffering from physical abnormalities or limited lifespans. Also, as the Guardian noted last week, any changes, or unpredicted genetic problems (mutations) will be passed to future generations. In general, the more manipulation needed, the higher the severity and frequency of problems in resulting embryos and fetuses.

Is it ethical? No, there are huge ethical issues. A large number of human eggs will be needed for the research, involving ‘harvesting’ that is both risky and invasive for women donors. How many debt-laden students or desperate infertile women will be exploited and incentivised by being offered money or free IVF treatment in return for their eggs? How many thousands of human embryos will be destroyed? If it ever works, what issues of identity confusion will arise in children with effectively three biological parents? What does preventing those with mitochondrial disease being born say about how we value people already living with the condition? Where will this selection end? 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, and who should draw it?

Is the debate being handled responsibly? No. The research scientists involved have huge 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. Hence their desire for attention-grabbing media headlines and heart rending (but highly extreme and unusual) human interest stories that are often selective about what facts they present.

It must be tempting for David Cameron, like Gordon Brown before him, in a week when politicians are itching for good news stories, to make promises of ‘miracle cures’ in years to come which no one may remember. But I suspect it is much more about media hype than real hope.

This is being driven as much by prestige for government, research grants for scientists and profits for biotechnology company shareholders as anything else.

Let’s keep a cool head and instead concentrate on finding real treatments and providing better support for affected individuals and their families rather than spending limited health resources on unethical, risky and highly uncertain high tech solutions that will most likely never deliver.

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More hype about ‘three-parent embryos’ – but huge ethical and safety issues

Two consultations have been launched this week into what has been called the ‘three parent embryo’ technique for eradicating diseases caused by genetic mutations in the mitochondria of cells.

Both the Human Fertilisation and Embryology Authority (HFEA) and the Nuffield Council on Bioethics will be carrying out enquiries into whether it would be appropriate and ethical to use the new technique in developing new ‘therapies’ to prevent the birth or conception of children with mitochondrial disease.

The HFEA has been specifically commissioned to do so by the Secretary of State for Health together with the Secretary of State for Business, Innovation and Skills.

At the same time scientists in Newcastle conducting basic research on the procedures have received £5.8 million, largely from the Welcome Institute, to determine the safety of the technique.

There has been a huge amount of media coverage on this over the last few days but for a quick overview of the science and ethical issues Nick Collins and Tom Chivers in the Telegraph are a good start. There is more helpful technical detail on the Nature News Blog and in Nature.

The ‘three-parent IVF’ technique developed at Newcastle University (on which I have previously commented) can be carried out in two different ways.

The first technique involves creating a fertilised egg in a laboratory, then removing its nucleus and placing it into another egg (from a third person) from which the nucleus has been removed (see picture above). This is called ‘pronuclear transfer’ and has already been used in Newcastle to create human embryos, some of which grew to the blastocyst stage (the stage when they would normally implant in the wall of the uterus) before being destroyed.

In the second technique - Maternal spindle transfer (MST) - the nucleus of the mother’s egg is removed and placed into an enucleated egg from a woman donor before this new composite egg is fertilised. MST, where fertilisation takes place after rather than before nuclear transfer, was used in 2009 to produce two rhesus macaques (named Mito and Tracker) which were born healthy and developed normally.

Regardless of which of the two techniques is used, the resulting embryo has nuclear DNA from a man and a woman and cytoplasmic DNA (in the mitochondria) from a second woman - so effectively three genetic parents, although the contribution from the second woman is very small indeed (just 37 of 23,000 genes).

Researchers claim the technique could help prevent mothers passing on a rare inherited condition called mitochondrial disease to their children. Mitochondrial disease is unusual in that it is transmitted through DNA in the mitochondria (cell 'batteries') in the cell cytoplasm rather than through DNA in the cell nucleus.

Getting the regulatory changes necessary to allow using the technique to be used in patients now no longer involves parliament but only approval from the Health minister.

There are about 50 different known mitochondrial diseases which are passed on in genes coded by mitochondrial (as opposed to nuclear) DNA. They range hugely both in severity and clinical features. For most there is presently no cure and little other than supportive treatment.

We need to be clear in the first instance that this new ‘treatment’, even it were eventually to be shown to work (and there is considerable doubt about that), will do nothing for the thousands of people already suffering from mitochondrial disease or for those who will be born with it in the future.

It is primarily about trying to prevent people with MCD being born - or at least helping a very small number of mothers who carry the gene to have children who are unaffected.

And we need to remind ourselves that there are already some solutions available for those couples who find themselves in the tragic position of carrying genes for mitochondrial disease – including adoption and egg donation (although I have serious ethical reservations about the latter).

Tom Chivers sees little in the way of problems with the new technique but I have three big questions:

1.Will it work? I am very skeptical!
2.Is it ethical? No, there are huge ethical issues!
3.Is the debate being handled responsibly? No, there are huge vested interests involved!

I have a great sense of déjà vu here. There is always in this country huge media hype about supposed breakthroughs in biotechnology and the IVF industry – especially the Newcastle group - is very skilled in arousing media interest.

But we have been here before with human reproductive cloning (the Korean debacle), so-called therapeutic cloning for embryonic stem cell research (which has thus far failed to deliver) and animal hybrids (now a farcical footnote in history).

We saw the false dawn most clearly with animal human hybrids where the biotechnology industry, scientists, patient interest groups and science journalists on the UK nationals duped both the public and parliament into legalising and licensing animal human hybrid research to produce stem cells.

The Newcastle unit is a world leader in promising much and delivering little – but given the short attention span of the media and the gullibility of the public few people seem to realise, remember or care.

I have questions about the safety and ethics of both techniques are as follows:

Safety questions

1. What will be the effect on the embryos of the small amount of abnormal cytoplasm containing defective mitochondria that is still being transferred?

2. Will any of these embryos survive beyond blastocyst stage? (cloned human embryos and animal-human hybrids produced by similar ‘nuclear replacement’ technology haven’t)

3. If they do survive will the nucleus from one embryo function properly with the cytoplasm of another?

4. Will the progeny be normal or be suffering from defects that are in fact worse than mitochondrial disease itself? (we know that cloning by nuclear replacement is possible in frogs, difficult in mammals, hugely problematic in non-human primates and currently not possible in humans)

Of course none of these safety questions will be able to be answered without research on hundreds if not thousands of human embryos, all of which will be destroyed in the process, which brings us to the ethical questions.

Ethics questions

1. What about the hundreds of human embryos that have already been destroyed in this research and the many more that will be destroyed now? Does the hunt for ‘therapies’ that might prevent a small number of disabled children (with mitochondrial disease) being born justify the destruction of hundreds if not thousands of embryonic human lives?

2. What will be the psychological effect on any progeny of the fact that their DNA is derived from three separate ‘parents’? What issues of identity confusion will arise in any children with effectively three biological parents?

3. Should we be able to choose effectively not to allow the disabled children, who would have been otherwise born by natural means, to be born? Why should parental preference for a ‘normal child’ take precedence over an (equally valuable) disabled child? Cristina Odone argues that we should be concentrating on finding treatments for disabling conditions, not preventing those who suffer from them from being born or conceived.

4. Where will this selection end? Some mitochondrial diseases are much less serious than others. Once we have judged some disabled babies not worthy of being conceived, where do we draw the line, and who should draw it?

5. What are the financial and ideological vested interests in this work? The Newcastle scientists have a huge 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. Hence their desire for attention-grabbing media headlines and press releases and heart grabbing (but highly extreme and unusual) human interest stories that are often selective about what facts they present.

What is currently happening in Newcastle may be legal in Britain – but it is illegal in almost every other Western country for good public safety and ethical reasons. Britain is regarded by many as a rogue state in all this.

So I’m not letting myself be carried away by the hype and spin. And I’m not holding my breath about the promises of therapies.

And as for ethics, one embryo destroyed in research or one disabled person excluded from being born so as not to burden others means for me that we have already crossed a crucial moral rubicon.

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