3.8 million human embryos created to produce 122,000 live births – success rate of 3.2%

The Daily Telegraph this weekend reports on a new expert study which has raised fears that some clinics may be offering techniques that put the embryo at risk for their own profit.

The review, carried out by Dr Justin McCracken, the former head of the Health Protection Agency, highlighted a new technique, known as Pre-Implantation Genetic Screening (PGS), as one which is possibly being offered inappropriately for commercial reasons.

For a fee, which can run into thousands of pounds, clinics can check embryos created by a successful IVF cycle for certain genetic abnormalities and only implant those that appear normal.

The process is becoming especially popular for older couples seeking IVF, because embryos created from their sperm and eggs have a higher chance of abnormalities. As it involves the removal of a cell from an embryo (see picture) it carries some risk for the embryo being tested.

Dr McCracken said the jury was still out on whether PGS improves the chances of having a baby and warned there is a risk of harm to the foetus. He said it was vital that the regulator checks that clinics are not simply recommending it to boost profits.

 ‘I understand that there is no clinical consensus regarding its efficacy, but there is a real risk to the embryo in carrying it out.’ (emphasis mine)

This is a somewhat curious statement. Dr McCracken seems (appropriately) concerned about the risk of damage to a few hundred embryos each year undergoing PGS.

But he is curiously silent (or perhaps unaware) that over three million embryos have perished or been deliberately destroyed since 1990 as a result of procedures made legal by the Human Fertilisation and Embryology Act.

Liberal Democrat Peer Lord Alton recently asked in parliament how many embryos have been created in each year since the commencement of the Human Fertilisation and Embryology Act 1990, and how many of these have resulted in live births.

Figures given in reply by the Under-Secretary of State at the Department of Health Earl Howe showed that 3,806,699 embryos have been created since 1990. Between 1992 and 2006 a total of 122,043 live births occurred according to figures from the HFEA given alongside his reply (see also here).

122,043 live births from 3,806,699 embryos represent a success rate of 3.21% (1 in 30). Or, to put it another way, 3,684,656 embryos never made it to birth. CMF has highlighted this ratio of 1 in 30 before.

These figures make McCracken’s concern about PGS embryos alone look like what Jesus called ‘straining a gnat whilst swallowing a camel’ (Matthew 23:23-24).

In a letter to the Telegraph, as yet unpublished, disability rights advocate Ann Farmer has highlighted the fact that, in addition to the vast wastage of embryos, some women have also died from complications of infertility treatments such as OHSS. She comments:

‘The whole point of the infertility industry is to manufacture babies out of embryos… A car factory that managed to accumulate 3,684,656 surplus models between 1990 and 2012 and in addition killed some of its customers would surely have gone out of business long ago.’

In 1948 the World Medical Association adopted the Declaration of Geneva which included the affirmation, ‘I will maintain the utmost respect for human life from the time of conception, even against threat’.

Today’s doctors, it seems, take a contrary view.

If you agree with today’s doctors that early human life can be treated as a disposable commodity then the figures that Lord Alton has uncovered (not much short of the current population of New Zealand!) will probably not bother you much at all.

But if, like me, you believe that they are special creations made in God’s image, which should be granted respect, wonder, empathy and protection you will no doubt be very concerned indeed.

See also ‘The moral status of the embryo. When is a person?’

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

Pre-implantation genetic diagnosis is too high a price for a perfect baby

Last week the European Society of Human Reproduction and Embryology (ESHRE) held its annual meeting in Stockholm, Sweden on 3-6 July.

Not surprisingly we had a number of stories from the papers presented at that meeting filtering into the media, the most notable of which was the Aberdeen study of the link between abortion and premature birth which I commented on last week.

However the BBC also ran a story which I initially missed titled ‘Gene dilemma to prevent next generation cancer’ reporting on the use of Pre-implantation Genetic Diagnosis (PGD) to screen IVF embryos for genetic disorders.

You may have noticed that Germany have just made it legal to use PGD to screen out embryos carrying disorders which are fatal to the baby during pregnancy.

However in the UK our policy is much more liberal and was liberalised even further by the Human Fertilisation and Embryology Act 2008. PGD has been offered by the NHS for more than a decade for serious diseases that come early in childhood (like Cystic Fibrosis, or Tay Sachs) but it is now also available for much less serious diseases. The first child born free of the breast cancer genes BRCA1 and BRCA2 by PGD was born only in 2009 but screening is now increasingly commonplace.

There are over 6,000 genetic disorders of varying severity and age of onset. Some result almost universally in miscarriages (eg. some of the trisomies), some are fatal in childhood (Tay Sachs), some fatal in adulthood (Huntingtons), others result in life-long disability (Down’s Syndrome) and some genes simply give you a high possibility of contracting a certain disease like cancer later in life (eg. BRCA). The problem is that Britain is moving rapidly down the slippery slope seemingly to screen out embryos with less and less serious conditions.

There is a huge moral difference between, on the one hand, testing prospective parents to see if they have particular genes and then advising them of the risk of having an affective baby (which if high enough might lead them rather to opt for adoption), and, on the other hand, searching out and destroying affected individuals either at the embryo stage through PGD or later in pregnancy through chorionic villus biopsy (at 8-10 weeks) or amniocentesis/ultrasound at 18-20 weeks.

Search and destroy techniques in the UK are increasingly common. Apart from the growing number of PGD cases there were almost. Statistics released just last week, revealed that between 2002 and 2010 there were 17,983 abortions on the grounds that there was a ‘substantial risk’ that the babies would be ‘seriously handicapped’ — known as ‘Ground E’ abortions. The overwhelming majority of these were for abnormalities compatible with life outside the womb.

The article describes a teacher from South Shields, Daniel Stanley, who lost his sister Natasha to breast cancer at the age of 28. Having been tested and found that he carried the same gene he and his partner Danielle were opting for PGD to screen out any affected embryos. Daniel is reported as saying that ‘having watched his sister, preventing that kind of suffering is almost a kind of duty’.

However there is a huge moral difference between on the one hand preventing or managing suffering in an affected individual, and on the other hand destroying that individual because it might suffer in the future.

The key question is, ‘is it better to live with the disability or have your life ended before you have lived at all?’ The overwhelming majority of disabled people would say that they would far rather have lived with their disability than not lived at all. So how can we presume to make that decision for others?

It seems that we have now reached the situation where we as a society are making the decision that human beings conceived with disability should not live either because we do not want them to experience suffering, or because having to care for them in their suffering would be a burden to others and society in general.

These cases of course raise serious questions about the status of the embryo and the nature of suffering.

My own view is that human embryos are human beings with potential worthy of the utmost respect, protection, empathy and wonder. The only difference between an embryo and you and I is nutrition and time. It follows that we should not be ending the life of a person with disability (or serious disease) before birth anymore than we should be doing it after birth.

The Christian ethic as exemplified beautifully in the life of Christ is that the strong make sacrifices for the weak or even if necessary lay down their lives for the weak. We are encouraged to bear one another’s burdens recognising that there are stages in the lives of all of us when we are deeply dependent on the love, care and support of others.

It would be wonderful if the Christian community could model this care for the sick and disabled, not just after birth but also for the most vulnerable of human beings before birth. But we need to begin by recognising that these principles apply even in the most serious conditions at the very earliest extremes of life.

If the price of a perfect baby is screening out and destroying embryonic humans with ‘special needs’ then that price is too high. It is far better to choose to remain childless, or to adopt, or to be prepared to provide a lifetime of care for a person with special needs rather than to go down that route. It is better, if your intention is ‘search and destroy’, not to be testing at all.

New advances in embryo testing may result in higher success rates for IVF but at what cost?

Two new embryo screening tests have been recently developed that researchers believe will increase success rates for women having a health baby after IVF treatment.

At present only about 30% of women under 35 have a baby following IVF and this percentage drops with age falling to 10% by age 40.

The new tests enable abnormal embryos to be indentified five days after fertilisation and before being implanted in the womb.

If embryos judged unlikely to survive are not implanted, it follows that the chance of a pregnancy reaching term is higher.

The first new test involves measuring the uptake of glucose by early embryos. Glucose is an energy source essential to growth and its low uptake is therefore a marker of poor growth in the early embryo.

Researchers at the University of Melbourne in Australia have developed the technique.

Their research involved 50 patients undergoing IVF. 32 of the women had a positive pregnancy test after embryo transfer and 28 babies were born. These 28 babies resulted from the embryos which had the highest glucose uptake. Controversially the method also has the potential to predict the gender of an embryo prior to implantation, as female embryos appear to take up more glucose than males.

The second new test involves determining the number of chromosomes in the developing embryo. The BBC has run the story this morning apparently after receiving a press release from specialists at CARE Fertility in Manchester. This will probably make it big news. However the story is not new and was covered by the Daily Telegraph and Bionews (amongst others) over a week ago. Those interested in knowing more about the technique will far more usefully spend their time examining these accounts.Tony Rutherford, chair of the British Fertility Society, expects the test will take two to three years to develop.

Aneuploidy (read more here)– an abnormal number of chromosomes – is responsible for a high percentage of pregnancies that spontaneously abort and is increasingly common with age.

But fertility specialists in the US state of New Jersey are claiming to be able to double IVF success rates by selecting out embryos with either too many or two few chromosomes. A Denver specialist has explained why the test is of particular importance to women over 35. He said, ‘By the time you’re in your mid-30s about 50 per cent of embryos are abnormal; by 40, 75 per cent are; and by 42, 85 to 90 per cent are’.

Fertility drops off rapidly after age 30 probably mainly for this reason. So it appears that the demand for this technology will be greater the more women, for whatever reason, delay trying for a baby.

So what of the cost?

The NHS currently provides funding for one cycle of IVF for women who have met the clinical definition of infertility, providing they have an identifiable cause to their infertility. After that couples have to pay. According to the Human Fertilisation and Embryology Authority (HFEA) the average cost of one cycle of IVF including drugs is between £4,000 and £8,000.

Preimplantation genetic diagnosis (PGD) – determining if the embryo is genetically abnormal before implantation – currently costs between £1,000 and £2,000 but it is likely that these new embryo screening tests, should they become commercially available, will cost considerably more. Cheaper options overseas will no doubt fuel more IVF tourism in future. Regardless, in an era of shrinking health budgets this is technology that is increasingly going to be only the reserve of the rich.

But money is only one part of the cost of IVF. There is also the emotional cost of being on the emotional roller coaster of a treatment for which results are not immediately obvious (confirming a successful pregnancy takes time) and where there is still a high probability of failure. 30% success rates are also 70% failure rates.

And finally there is the moral cost. This new technology is essentially eugenic. It involves identifying and discarding (or not implanting) embryos that are judged to be abnormal. It might be argued that many of these would not have survived pregnancy anyway - embryos for example with trisomy 16 inevitably do not survive pregnancy – but a significant number do.

These include babies with Down Syndrome (Trisomy 21), Edwards Syndrome (Trisomy 18), Patau Syndrome (Trisomy 13) and Turner’s Syndrome (XO), who carry disabilities varying in form, number and severity. Some of these are treatable and some aren’t.

Are we therefore saying that embryos which can not look forward to a life without disability should not be given the chance to live?

Interestingly the Pope is quoted in the Hindustan Times just yesterday on this very issue. He said, ‘it is indispensable that new technological developments in the field of medicine never be to the detriment of respect for human life and dignity, so that those who suffer physical illnesses or handicaps can always receive that love and attention required to make them feel valued as persons in their concrete needs.’

He added that the number of people with Down syndrome ‘has declined mostly because a good number of them are eliminated before they are born.’

In December 2008, the Vatican issued a document affirming the ‘dignity of the human embryo’ which listed biomedical techniques considered ‘illicit’ by the Roman Catholic Church. These included in vitro fertilisation, cloning, the therapeutic use of stem cells, producing vaccines from embryo cells and the ‘morning-after’ pill.

Such practices go against the ‘fundamental principle’ that the dignity of the person must be recognised from conception until natural death, it said.

Quite!