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A British couple have won the right to test embryos for a gene that leads to high cholesterol levels and an increased risk of heart attacks, The Times has learnt.
The decision by the fertility watchdog will reopen controversy over the ethics of designer babies, as it allows doctors to screen embryos for a condition that is treatable with drugs and can be influenced by lifestyle as well as genes.
While the procedure is designed to detect a rare version of a disease called familial hypercholesterolaemia (FH), which often kills children before puberty, it will also identify a milder form that can be controlled by drugs and diet.
Critics argue that the test will allow couples to destroy embryos that would have had a good chance of becoming children with fulfilling and reasonably healthy lives.
The test will also create an unprecedented moral dilemma for some couples, as it could show that they have produced no embryos completely unaffected by the disease. This would force them to decide whether to implant embryos that they know have a genetic risk of premature heart disease and death, or to throw them away and deny them a chance of life.
Britain’s first licence to test embryos for FH will be awarded next week to Paul Serhal, of University College Hospital in London, by the Human Fertilisation and Embryology Authority (HFEA).
Its decision breaks new ground because it permits Mr Serhal to screen out not only the severe form of the condition but also the milder type, which is usually treatable.
Embryo screening has previously been approved only for disorders in which a gene invariably causes a serious disease, or for conditions such as breast cancer in which mutations carry an 80 per cent lifetime risk.
FH occurs in two forms. The more common version, heterozygous FH, affects 1 in 500 people. It is caused by a single mutated gene, which raises cholesterol and thus the risk of hardened arteries, heart disease and stroke. It can usually be managed with statin drugs and diet.
One in 250,000 people inherits two defective copies of the gene and develops homozygous FH, which is much more serious. Sufferers show severely elevated cholesterol from the age of 5, and can suffer angina by 6 or 7. Many die in childhood, and most have suffered at least one heart attack by the end of their twenties.
Mr Serhal’s patients, who are in their thirties, both have the milder heterozygous FH. They discovered their status only when they had a daughter, now 5, with the homozygous form, and they also have an unaffected son.
They said yesterday that they were delighted. “We had no idea that we both carried a gene for high cholesterol until the double gene was expressed in our first child. We are very lucky that our child has responded so well to the very high-dose drug regime. We have been led to understand that other children with the same double gene may not be so lucky.”
The couple, who approached Mr Serhal after learning that he was offering the pre-implantation genetic diagnosis test for a breast cancer gene, will have IVF next month, even though they are naturally fertile.
A single cell will be removed from each embryo at the eight-cell stage, and be tested for defective FH genes. Any that have homozygous FH will be discarded. The test will also determine whether the remaining embryos are completely clear of FH, or whether they have the heterozygous form. There may be none that are unaffected, leaving the couple with a difficult ethical decision.
Mr Serhal said: “This obnoxious disease can cause cardiovascular accidents at a very young age. Ideally, we will find embryos with no FH genes, but it is possible we will not and it will be up to the patients to choose. Some people would think twice about using embryos that they know have a risky gene, and others would say you shouldn’t screen out a condition that can be managed so people can live with it. It will be an awkward choice.”
Mr Serhal said that the HFEA had also indicated that it would be prepared to sanction screening for the milder form of FH alone for couples in which one partner was a carrier and the other was not, though he was not yet proposing to do such screening.
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All those who are not in favour of these genetic tests I can only say have never lost or watched their child suffer from an incurable genetic disorder. I have and if I could have another child free from the genetic disorder that killed my son at 2 days old I would.
Beth, Cambridge, Cambs
I am 25 and have familial hypercholesterolaemia. I've had it since age 3. I grew up in a hospital, taking experimental medication and attending cholesterol classes with the 50+ set. I have the 'mild' form of the disease. Everyone on my father's side has had heart surgery by age 35. They never had the luxury of statins or proper diagnosis, I did.
I am at the age where I am considering having a child. I plan on having genetic testing, just like the couple in the article above. Children born with the homozygous FH gene living beyond the age of two are incredibly rare. This couple's child is a large exception to the prognosis. The fact is, she is most likely on a massive dose of statins or experimental drugs and will be on some sort of dialysis in the near future. Most children born with the homozygous FH gene need urgent liver transplants.
Obviously, destroying the fetus which has a form like mine is ludicrous. But bringing a child into the world who will most likely die before 2 years?
Carla, London, UK
i am too doing a case study and beleive that people should not use pgd to designer their child. however i am a triplet and was produced by ivf treatment, ivf is still natural is not playing with genetic characteristics
rebecca, yorkshire, england
i think it is really mean making designer babys people should be happy with the child they get no matter what it looks like
im doing a case study for school at the moment about this and i just think its horrible
sammy, haywards heath, uk
This article is incredibly misleading - the HFEA have ONLY granted a licence for screening out of homozygous forms of the disease - something which the article fails to make clear. They are not suggesting that the heterozygous embryos- the same as the parents - will not be implanted. This development is not suggesting that people with the milder form should be prevented from being born or that such lives are unworthy.
Kirsty, London,
The age of drugs, vaccines, and surgery was our old science, and it took a while to get used to (Some never did.) The new medicine is genomics.
We all need to keep discussing these things in a thoughtful and rational way---so that we agree to make the advances that we need to make, and still feel comfortable with our social and moral compass. We can take on this new challenge with grace if we keep ourselves informed.
There doesn't need to be a dystopian slope to armageddon. It's new. We don't know what to make of it, yet. Time to get informed. It's our civic responsibility.
Jared P., San Diego, CA
Hitler would love this
Ginger, Iowa Falls, IA
Everyone just needs to watch Gattaca to understand the full consequences of these types of actions, I am a die hard liberal but this can turn into something really terrible, and fast.
Catherine, Boston,
While it it admirable that the parents wish to keep their child from suffering with the severe form of high cholesterol, isn't it pathetic that people think that life is not worth living if one is born with a high cholesterol disorder? Think of it. Here is the couple with the child who has the severe form of high cholesterol and they are controlling the disease well and the child is doing quite well. They would be murdering a human being if they took away their child's life. However, if an embryo, who would grow to be genetically similar to their child, were alive they would be allowed to kill that child who is simply at an earlier stage of growth. This is total lunacy! To characterize human life as valuable or not because the person has a disease, is like a life made up of waiting around for one's genetically predisposed diseases to manifest themselves. If this is what a scientifically examined life and scientifically prudential decisions entail they are monsterous values.
William R. Moore, Minneapolis, USA / Minnesota
I'm against abortion, but this only science taking care of what we used to do with natural selection, today we are a weak race of human beings with all sorts of aliments that normal natural selection would have removed, but we have moved on from nature and now must force science to do natural selection for us.
The best thing would be to allow a corporation to raise children for their own potential benefit, if the child after the age of 18 decides to continue on with the company great, if not they are left to their own devices, maybe the company would even have a investment arm that funded some of the kids who wanted to leave that had an ability that the corporation found favorable, if we are a race to survive our limited time on this rock called earth we are going to have become serious about getting off soon.
Billy Norton, San Jose, CA
Dectora..Don't deviate from the main point.. god ..wish that farmer had never met that nun.. Strueth!!)
James Burnett, Dundee, Scotland/UK
How utterly short-sighted and morally inert can our policy makers be?
How do the HFEA make decisions? Have they considered - even for a moment - the long-term consequences for our society of allowing mild treatable diseases to be 'screened out'?
Astonishing.
Toby, Bedford, UK
Who is it who feels threatened by designer babies? I feel threatened by the immigrant colonisation of my land but that doesn't count as important.
The increase in genetic defects in the human population is a spin off from medicine.
In nature the defective die, period.
Medicine now cures them and allows them to reproduce spreading the defect.This is termed the mutational load.
If it continues unabated then in 200 years time all human babies will be born blind albinos with holes in the heart.
Apart from ditching medical knowledge totally designer babies are the only alternative.
Keith Bentham, Wigan, Lancahire
As someone who rejects selective genetics, and abortion, I sometimes wonder what life would be like if people like me said and did nothing - let the amoral scientists have what they want for 12 months and see what society they create. There is a constant rejection of a moral and spiritual point of view in these debates. We are kind of like the 'adults' that they butt heads with.... we - the 'moralisers' question them, require them to explain and defend their actions... and just like children, they think the fight is with us. Dear amoral, secular scientists and their followers, where will YOU put the limits and why?.... You may think that, 'what ever is good for me/us' ought to be o.k., but study history and see what happens when narcissism is the predominant philosophy - as it is in this age. This new science is shaping our society, I challenge purveyors of this science to take responsibility for its impact, and stop petulantly rejecting the moral dimension.
Catherine R.,, Cairns, Australia
Lucky for us that the parents of (Agatha Christie - Alfred Lord Tennyson - Algernon Charles Swinbunre - Blaise Pascal- Charles Dickens
Dante - Edgar Allen Poe - Edward Lear - Fyodor Dostoyevsky - Gustave Flaubert - Guy de Maupassant
Lewis Carrol - Lord Byron - Professor Manning Clarke - Pythagoras (Philosopher & Mathematician)
Sir Walter Scott - Socrates - Truman Capote) weren't tested for Epilepsy. Our world would be a much less interesting place.
Martha Ware, Hammonton,NJ, NJ/USA
James- Perhaps you should be called Jack as in I'm all right!
You and your family have been lucky..,I suggest you thank your lucky stars instead of taking the 'slippery slope ' line in respect of others far more seriously affected than you.
This is anything but a 'minor' condition which devastated my husband's family. His father suffered a fatal heart attack in his early fifties, his brother suffered a major heart attack in his early twenties, survived but suffered brain damage and my husband , slim and fit died age 31.
With this family history I had no children, but if the technology had existed, would have welcomed the oppportunity to have screening.
Lily, Truro,
Stephen Hawking wouldn't exist if his genetic scan had caused his parents to opt for another 'better' combination.
Genetic diversity is what strengthens the gene pool against diseases. Selection is advertised as 'we want a healthy baby', but this will quickly turn into whatever traits the parents want. Males in Asia. I foresee a desire for statuesque blonde and blue-eyed athletes, oh no that's been tried already.
Was Beethoven's blindness genetic? Was Napolean too short? Was Churchill too fat? Was Lincoln too tall?
How do we know what adaptatons lead to leaps forward in evolution? If we unnaturally select the gene formula for our offspring will a pervasive set of genes make whole swathes of people vulnerable to an epidemic?
Ken Shepherd, Tampa, FL
Seeing that the earth has 6.5 billion people, humans are not really an endangered species.
I see no problems with couples making more of an effort to rid the next generation of severe, or even mild forms of genetic-based conditions. After all, it will be society that will ultimately pay for their health care, and by all accounts we are overtaxed as it is.
If genetic testing results in fewer births, then so be it. Humans are not endanged species and if we don't start to limit our population growth the world of the future will be a sad place.
Joe Blow, Toronto, Canada
Gee, Mr. Lincoln of Nebraska, you're such an optimist.
Elizabeth, Longview,
Hey Action Jackson (sic)
I live in Pittsburgh too. What's the scientific publications about DNA evolution you reference? And the accusation you talk about?
Not being allowed to have children, or abortions on basis of high cholesterol is ridiculous. Definiately a slippery slope that shouldn't be taken. If followed to the extreme (which you figure someone will try), then eventually it could lead to no children on the basis of mundane things like ugliness. Isn't all this reminiscent of pograms and genocide 'justifications' for weeding out so-called undesirables?
If all we bred for was perfect physical specimens, then hypothetically imagine a world of only jocks and models. Generalizing, but that wouldn't necessarily make for the brightest and advancement of the human race.
What should be discussed is ways to ensure that decent people, esp. those who make worthwhile contributions to society, who need medical care can get it and aren't denied by greedy insurance companies or corps.
Responder, Pittsburgh,
Folks, Whether we like it or not, the price of medical care will force these kind of choices on all of us. The next couple of generations will not be happy times unless you are wealthy enough to afford whatever advances in medical care come down the pipeline and have enough money to live for a 100 plus years in comfort. There will be many reasons not to add someone to the population that will cost millions of dollars to keep alive. Sorry but that's the way it's going to go unless one of you is clever enough to change the economic and social structure. Robert, Lincoln, Nebraska
Robert, Lincoln, Nebraska, USA
Isn't it possible that one of these designer babies could be hit by a car and killed when they're 9 years old? It doesn't matter what you try to weed out, something will kill you. Only God has that plan.
Frank, Tulsa,
If people cannot handle the reality GOD chooses to provide them....then those people should NOT reproduce!!!! There is good vs. evil NO MATTER WHAT!!!!!! We are NOT GOD and should stay away from ANY practices that suggest we play that type of role!! All children do have a right to live healthy and happy.....as long as that is what GOD intended!!!! God puts challenges here on Earth for us. Unfortunatly, those challenges include our children as well.
Sandra, Tehachapi, CA
As recent scientific publications show the human race is developing at a much faster pace than thought possible before DNA mapping. Natural selection is (so far) a proven fact. So because you might have had high cholesterol but would also have had an IQ potential of over 200 we disallowed your exist. We wouldn't want you to suffer or possibly us learn from you the lessons you may have taught us. This is a slippery slope we should look at CAREFULLY before accusing.
Axtion Jaxon, Pittsburgh, PA., USA
The Human Fertilisation and Embryology Bill is currently passing through the House of Lords. We are extremely concerned with Clause 14 of this Bill.
The paragraph of greatest concern is under Clause 14 (4), and states as follows:
â(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or developâ
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,
must not be preferred to those that are not known to have such an abnormality.â
Who determines what is a serious disability, illness, or medical condition? Are individuals with such conditions not worthy of life?
is this attempt to create a "perfect race" via selective breeding reminiscent of an early time?
Peace,
Patti Durr, rochester, ny
The brave new world is getting closer. For the first time in my life, I'm glad that I am getting old. I fear for mankind.
Paul Conlon, norwood, ohio
This so called mutated heart gene may code for something else then raised cholesterol. The later may be a symptom rather then the disease called hyper-cholesteremia. Cholesterol is innocent and lots of people are healthy with higher levels, no strokes and no heart disease. The mantra to lower it is to scare people to take statins and make the manufacturer obese with profit. Incidentally statins beneficial effects (albeit the side effects can be lethal) is its anti inflammatory action. When investigated what happens before cholesterol enters the picture and becomes components of plaques a few preliminary steps took place that set the cascade of events culminating in atherosclerosis. Analysis of plaques themselves is instructive. Few surprises there.- People die of strokes and heart disease with perfect scores and not all of them because of heart muscle spasms.
We became neurotic about fertilized eggs and developing foetuses who have gross genetic defects. While our humaneness is half of emotional sensitivity and half rational ability some other mammals are observed to have to some extent. Problem is that our ethics and morals are still shackled by speculative religious dogmas and early brainwashing hinders clarity at our lives when we really need it. The religion industry is doing its harm till we outgrow it and opt for spirituality only rather then this counterfeit.
I would be accused of being promoter of eugenics. I am not. I am working at the coalface and meeting fear, misery, tragedy, only try what I can to ease them or stabilize the mislead and scared. My own life experience in these matters is part of my toolbox.
Someone who newer born would not miss the positives nor the negatives of living and dying.
The seed is not the same as the tree. The potential is not the same as the actual. Theological gymnastics blind us in fear and dread of eternal punishment of a deity whose mistakes we try to correct (so much for all knowing, all loving, omnipotent Gods).
It is intelligent and loving act to stop a foetus developing with known gross defects. It is not killing a baby! Children born with gross defects impacting on their lives as well their parentsâ of course ânot; to be put downâ. Some parents cope better then others and so long the damaged child is provided with the maximum support to enhance her life it is fair enough. I donât support frivolous decisions or selective abortions to secure a preferred sex. This is a huge topic deserving and needing more than I attempted here in a nutshell.
Joseph Putnoki , Chadstone 3148, Australia/ Victoria
These types of things would not happen if Great Britain had not succumbed to the NHS. Remember, the less people there are to treat, the easier the job is for the NHS. Not to mention the fact that there are very few scientists in connection with Great Britain researching new drugs. This is once again because of the cost that would be levied upon the NHS if reasearch and deveopement had continued at its former pace. In conclusion; less babies equals less money spent by the NHS towards actual health care, and more to the bureaucrats who control the NHS.
Michael, Baltimore,
Oh, this is not only sad, it's horrifying. My mother died at 41, my brother had bypass surgery at 38, my niece had a heart attack at 32 and got three stents. I've been taking statins for about 20 years...I've got the mild form of hypocholesteremia. Untreated, I'm up near the 400's. With statins, I've maintained levels in the 240's and now with the combo drugs I'm under 200. I'm 54 years old and would like to think I've made a positive dent in society. Never had a heart attack, never had angina...all due to the statins, I believe. This is scary.
Randy, Westlake Village,
Wouldn't it be great if no one ever needed medical attention except for accidents?
Big Don, Podunk, USA Nebraska
James 'you' would not exist if your parents had never met.' I '--the unique I which is writing this email--would not exist had my mother not met my father, married a local farmer in County Cork, or become a nun.
Dectora, London, UK/ex Ireland
Studies show, however, that when this gene is recessive, metacarpae hirstutenses occur.
Dion Per Sona, Cardiff, UK,
This sets us on the slippery slope towards producing children who are healthy and who don't suffer from diseases and abnormalites and towards a world where the voices of those whose ethics seek to prevent this are heard less than the parents who wish to prevent their children from suffering.
Can we allow this to happen?
Chris Jackson, London,
I have high cholesterol.. am early 40's/male .. and it's an inherited familial hypercholesterolaemia 'disorder' (my father has it). My cholesterol level is down to normal through the use of statins. My father never had that choice to take statins in the 90's and subsequently had a heart attack in which he happily survived.
I'm fit and slim, have a high IQ, have a good sense of humour and am very creative. I enjoy life and people. I'm glad I'm here!!!
Are you telling me I wouldn't have existed if my parents, had they been that mindless would have elected to terminate me?
We'll soon in the nearish future be in the position of telling people (ie like my Father) that he CAN'T have children because of his high cholesterol. Or whatever condition.
Being presented with this black and white choice will make parents think that minor 'conditions' like this are 'bad'.
As precedent setters go this is a pretty big one!! Beware.
James Burnett, Dundee, Scotland/UK