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, here and here. Also see CMF’s official submissions to the HFEA and Nuffield consultations on this issue and  a recent blog post where we argue that these techniques are unsafe, unnecessary and unethical.  

New genetic test brings prenatal eugenics one further step closer

Last August I blogged about a new pre-natal screening test that makes eliminating all people with genetic disease an achievable reality.

I said at the time that this test may mean that every pregnant woman will have a simple blood test at an early stage in pregnancy and offered an abortion if their baby carries any genes (including a female chromosome!) that they find undesirable.

Cell-free fetal DNA is DNA from the baby that has crossed the placenta into the mother’s blood. It makes up about 10% of all free DNA in the maternal blood and can now be examined to determine the baby’s sex and what genetic disorders it carries.

Today the BBC reports on new US research where a ‘blood sample from mum and saliva from dad’ were used to sequence the genome of an 18 week unborn baby using just this technology.

The doctors have said that the findings, reported in Science Translational Medicine, could eventually lead to foetuses being screened for more than 3,000 single-gene disorders through a single, non-invasive test.

The Abortion Act 1967 currently allows abortion up until birth where there is a ‘substantial risk’ or a ‘serious handicap’ – so-called ground E - but this is currently interpreted very liberally indeed.

Last year (see table 9) 146 babies ground E abortions were carried out after 24 weeks, the accepted age of viability, after which there must be such a serious risk for an abortion to be legal if the mother is not in danger.

But, overall in 2011, 2,307 babies were aborted under ground E including 512 with Down’s syndrome, 144 with spina bifida, 157 with a family history of heritable disorder and 4 with cleft lip and palate.

Between 2002 and 2011 there were 20,290 ground E abortions, the overwhelming majority of which were for conditions compatible with life outside the womb.

Of these, a total of 1,335 babies were aborted after 24 weeks.

The figures are a chilling testimony to a growing eugenic mindset in Britain, where babies with disabilities are eradicated before birth so as not to place a burden on families, society or the health service.

And yet these 20,000 abortions constitute only a fraction (1%) of the over seven million there have been in the UK since the Abortion Act was passed in 1967.

It is at the very heart of Christian teaching that human beings have value not because of any ‘intrinsic’ qualities they may possess, but for two main ‘extrinsic’ reasons. First, that they are made in the image of God for an eternal relationship with him, and second because God himself became a human being in the person of Jesus Christ and thereby bestowed unique dignity on the human race.

If we follow that view through to its logical conclusion it leads us to say that any human being, regardless of its age, appearance, degree of deformity or mental capacity, is worthy of the highest possible degree of protection, empathy, wonder and respect.

Our society’s increasing obsession with celebrity status, physical perfection and high intelligence fuels the view that the lives of people with disabilities or genetic diseases are somehow less worth living.

By contrast the Christian view is that the life of every human individual, regardless of its intelligence, beauty, state of health or degree of disability is infinitely precious. A just and caring society is one where the strong make sacrifices for the weak, or in the words of the Apostle Paul, ‘bear one another’s burdens, and so fulfil the law of Christ’ (Galatians 6:2).

Let’s recognise and resist the eugenic mindset. Our priorities should be to develop treatments and supportive measures for those with genetic disease along with support for their families; not to search them out and destroy them before birth.

Guest Post - Dr Shane McKee fights back on PGD

Last night I posted a blog with the rather provocative title 'Geneticist claims that weeding out embryos with severe genetic abnormalities is "a tremendous blessing and a wonderful thing"'.

It featured consultant geneticist Dr Shane McKee's recent 4thought interview on pre-implantation genetic diagnosis.

Shane (pictured) is a consultant geneticist and self-styled 'Christian Atheist' in Northern Ireland with whom I frequently spar on twitter. One of our previous twitter dialogues (twebates) is available on this site.

Today Shane asked me if I would post his email reply on this blog which I happily do. I have agreed not to reply yet....

Dr Shane McKee replies

When did I say I supported abortion up to 40 weeks? I do not "support abortion" - I recognise that there are circumstances in which a family may decide that the best course of action is not to continue with, or initiate, a pregnancy that will result in a child with a devastating congenital disorder.

For you to bring Klinefelter and XYY etc into the mix just shows your ignorance of paediatrics and genetics. You can leave your childish blog post up there unaltered if you wish; it says a lot more about you than it does about me or my medical colleagues, who are trying to help families faced with terrifying prospects and agonising decisions. These people are real, and they mean a lot more to me than you, with your blinkers, can ever appreciate.

And, yes, if you needed a kidney, I would still give you one. But if I had 100 8 cell embryos, I would unhesitatingly disaggregate them and genetically re-engineer them or whatever in order to, say, treat a child with Duchenne Muscular Dystrophy, or a young mother with Huntington's Disease.

Because an embryo is not the same as a person; it is not a "disabled individual"; it is not a "person". An acorn is not an oak tree. A map is not a journey, nor is it the destination.

So I dare ya. If you have an ethical atom in your brain (for it is in the function of that tiny organ that your humanity - which I fully acknowledge - resides), post THIS email as a post on your blog. Don't add your little italic comments - leave it for your readership to do that in the thread below. You can start to respond after 5 comments.

Are you man enough to do that?

Geneticist claims that weeding out embryos with severe genetic abnormalities is ‘a tremendous blessing and a wonderful thing’

A consultant in genetic medicine has said that he believes new technologies that enable doctors to search out and discard human embryos with severe genetic disease are ‘a tremendous blessing and a wonderful thing’.

Dr Shane McKee made the announcement this week on Channel Four’s 4thought programme as part of a debate on the use of pre-implantation genetic diagnosis.

Judging by rapid responses on the Chanel Four website most viewers seem to agree with him.

Dr McKee’s announcement comes a week after news broke of a new test for discovering chromosomal abnormalities in embryos.

Chromosomal anomalies are known to be the single most common cause of miscarriages. Historically, about 50% of miscarriages were thought to be due to abnormal chromosomes.

However, now that pregnancy is detected earlier and we know that miscarriage is more common than previously thought, it is now suspected that the percent of miscarriages due to chromosome abnormalities is actually higher than 50%. Extra copies of chromosomes 15, 16, and 22 are often seen in miscarriages.

However, children with an extra (third) chromosome 13, 18, 21, X or Y frequently are born alive.

While those with extra 13th and 18th chromosomes die in childhood (Patau and Edwards syndromes), many with an extra 21st chromosome (Down’s syndrome) and many of those with extra X and Y will live into adulthood and have fulfilling lives.

A transcript of Dr McKee’s talk is below with my comments added in italics.

Dr McKee on Pre-implantation Genetic Diagnosis

What we’re trying to do is to offer families the chance to do what they feel is ethically right. I’m Shane McKee. I’m a doctor in genetic medicine and I regard the technological advances that we’ve made over the past ten to fifteen years as being a tremendous blessing and a wonderful thing that we can bring to bear to try and help individuals and families either affected with, or at risk of, severe genetic disorders to live and reproduce as normally as possible.

>> Dr McKee is talking about the technique called pre-implantation genetic diagnosis (PGD) where human embryos are produced by in vitro fertilisation and then examined for chromosomal or other genetic abnormalities in a laboratory. Those judged to be abnormal are then discarded and only normal embryos are placed back in the uterus. He regards this as a ‘tremendous blessing and a wonderful thing’. Many embryos with genetic abnormalities do not survive pregnancy of course but many also do as people with a range of disabilities. Some of these are severe resulting in death during childhood but many others live on into adulthood.

I think it’s very important to make a distinction between the efforts that we make to try and prevent a child being born with a severe genetic disease and the notion that we are somehow against disabled people.

>> Dr McKee has to say this but in fact what he is advocating is selecting out and destroying disabled people at the embryo stage so that they never have a chance of being born. So when he talks about ‘preventing a child being born with genetic disease’ what he really means is weeding out the affected individual after fertilisation but before implantation. Many disabled people would see Dr McKee as discriminating against them and making judgements about the value of their lives which he has no right to make.

Whenever you think about families who are already faced with the problem of looking after a disabled child, if you introduce another disabled child into the equation, a second or a third, then that is an added burden on that family and it actually detracts from the care that they are able to offer to the first child or the second child.

>> This is of course true. Caring for one severely disabled child can be a huge challenge. Caring for two or three is an even greater one and families with disabled children need huge support. But Dr McKee does not make it clear that the solution he is advocating involves actually ending the lives of these disabled individuals at the embryo stage. In other words, the burden on families is relieved by killing those who are perceived to be creating the burden. Caring for the sick and dying is surely a far more compassionate option and societies will ultimately be judged on the way they treat their weakest members. To say that human lives which create a burden for others can be justifiably killed is to establish a very dangerous precedent indeed. It also ignores the many positive effects that those with disabilities have on society.

So I think it’s very important that we put this all in context. If you were trapped inside a burning in vitro fertilisation clinic and you had a four year old child in one room and you had a vatful of embryos in another room I think most people would save the child first.

>> It is true that most people do believe that children are more important than embryos but this is a false analogy. Dr McKee is not talking about saving a child over an embryo. He is actually advocating destroying embryos that have abnormalities and ensuring that they never have the chance to live.

And that’s because I think innately we know that a child is of more value than the egg that leads on to a child.

>> Note the subtle sleight of hand here. In the last paragraph Dr McKee was talking about embryos. Now he is talking about eggs. No one would argue that an unfertilised human egg is a human being. But many people take the view that an embryo (produced by a sperm fertilising an egg) is an early human being and has a right to life.

In fact I would find that the reduction of the value and the joy of human life down to something that you could fit inside a single egg cell as to be something slightly demeaning.

>> Again the sleight of hand with reference to egg and not embryo. But Dr McKee is actually not advocating destroying eggs but embryos. The human embryo is not a potential human being but actually a human being with potential, a potential child or adult. The only difference essentially between a human embryo and you or I is nutrition and time because all our genetic attributes are already present in the embryo. Furthermore, the human embryo’s value should not be based on its age or size – these are not morally relevant characteristics – but on the fact that it is human.

What Dr McKee does not say of course is that as well as supporting the destruction of abnormal human embryos he also supports abortion up until the time of birth for ‘serious’ congenital abnormalities. He also believes that fetuses under 22 weeks gestation are 'not people'. That is because he judges the worth of a human being on the basis of its capacity for sensation, communication and awareness. Embryos and foetuses by this reckoning are not actually persons with rights. Those who do not accept Dr McKee’s unstated presuppositions about the value of life before birth will also not concur with his conclusions. Dr McKee would, for example, not agree to the Declaration of Geneva which requires that doctors ‘maintain the utmost respect for human life from the time of conception, even against threat’.

For an alternative view on disability see this video which has gone viral on the internet with over 7 million views

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.

New genetic screening plans raise serious questions about our attitudes to disability

The Human Genetics Commission (HGC), a government advisory committee, has given the green light to preconception genetic tests saying that there are no specific ‘social, ethical or legal’ reasons that stand in the way. The UK National Screening Committee will now consider this advice as it decides whether widespread screening should be introduced in GP surgeries, family planning centres, IVF clinics or pharmacies.

Screening of embryos and babies in the womb for genetic tests is now increasingly commonplace in Britain. If abnormalities are found the affected embryos are generally discarded and affected babies are aborted.

The HGC is recommending that these tests be available to both children and adults before they have children in order to increase their ‘reproductive options’.

The move has already attracted a lot of criticism.

Dr Helen Wallace, director of GeneWatch UK, has said: ‘The idea that young people should be choosing partners or deciding to use IVF based on their DNA is both dangerous and misleading. Even if everyone were screened, some children would still have genetic disorder because many mutations occur spontaneously and are not inherited.’

Dr David King, director of Human Genetics Alert, has warned that the report ‘will inevitably lead to young people being stigmatised and becoming unmarriageable’ and that ‘disabled people will feel even more threatened.’

Dr Calum Mackellar, Director of Research at the Scottish Council on Human Bioethics, has raised the question of whether the HGC's decision is an example of negative eugenics.

And Josephine Quintavalle, from the campaign group Comment on Reproductive Ethics, has warned that the recommendations were ‘far too deferential to genetic determinism’.

There are literally hundreds of identifiable genetic disorders that can be passed on from adults to children. These vary in severity (from fatal to minimal functional disturbance), clinical effects, age of onset and frequency.

The vast majority are vanishingly rare and most doctors have not even heard of them. There are some diseases which are much more household names such as sickle-cell disease, cystic fibrosis and PKU, all of which are tested for using the Guthrie test heel prick routinely carried out five days after birth.

However even these ‘common’ conditions are very rare having frequencies of 1 in 650 (only among African Americans), 1 in 2,000 and 1 in 12,000 respectively.

The pattern of inheritance also varies. People will generally know that they carry ‘autosomal dominant’ disorders such as Marfan’s syndrome because they will be physically affected themselves. However recessive diseases like cystic fibrosis and sickle cell disease can be carried by people without them knowing. Only if both parents are carriers can the children be affected, and then only then 1 in 4 children will display the disorder.

So what are these ‘reproductive options’ that the government is wanting to promote?

One ‘option’, if you find yourself to be a carrier, would be simply not to marry another affected person. But who is going to ‘choose’ that if they are truly in love?

The next option would be for affected couples to choose not to have children but rather to adopt. But then there are very few babies available for adoption nowadays with the rise of abortion and with many solo parents choosing to keep their children.

The next option would be to make use of IVF technology employing either donated egg or sperm but that raises all sorts of ethical issues.

Failing that the only remaining reproductive options are embryo screening, chorionic villus biopsy or amniocentesis followed by embryo disposal or abortion. However these last options do not involve treatment or prevention of genetic diseases, but rather destruction of those individuals who carry affected genes.

So the overall effect of this new technology will be more IVF and more embryo disposal and abortion.

What is really driving all this? My concern is that it is our society’s increasing obsession with celebrity status, physical perfection and high intelligence leading to the view that the lives of people with disabilities or genetic diseases are somehow less worth living.

By contrast the Christian view is that the life of every human individual, regardless of its intelligence, beauty, state of health or degree of disability is infinitely precious. A just and caring society is one where the strong make sacrifices for the weak, or in the words of the Apostle Paul, ‘bear one another’s burdens, and so fulfil the law of Christ’ (Galatians 6:2).

Increasingly now, we hear, particularly at a time of economic recession and financial constraint, about the cost of caring for those with disabilities or disease. However because of the very low frequency of genetic disease, the actual cost of prevention, treatment or cure as a percentage of the total health budget is very small indeed.

Furthermore, new preventions, treatments and supportive measures are being developed all the time. In the past PKU universally led to serious brain damage but can now be successfully managed with the right diet after detection. People with cystic fibrosis are living much longer and have a better quality of life as a result of advances in medical technology and palliative care.

If we are really concerned about health spending then we should be investing much more in the prevention of the growing burden of disease occurring as a result of what is euphemistically called ‘life style choices’.

People who drink too much, smoke too much, eat too much, fail to exercise, drive recklessly or have sex outside marriage contribute far more to society’s disease burden then those who, who through no fault of their own, carry genetic diseases with genetic disabilities.

And the health costs of caring for the growing number of elderly people in our society, would not be a problem if our birth rate, largely as a result of ‘life style choices’, had not fallen beyond replacement levels.

There are far more important priorities for government spending than rolling out genetic screening for rare diseases and fuelling the growing eugenic mindset which is leading to more and more highly questionable ‘reproductive choices’.