Posted on 01/17/2009 4:47:51 PM PST by GOPGuide
HUNDREDS of Scottish couples are being offered a revolutionary screening service to create "designer babies" free of deadly genetic diseases.
The treatment – which could be funded by the NHS – involves taking a single cell from an embryo created using IVF and testing it for one of 200 rogue genes behind inherited conditions including cancers and cystic fibrosis.
The private clinic in ADVERTISEMENTGlasgow will then implant only embryos guaranteed free of a specific genetic fault, charging £5,500 for each round of treatment.
It is the first time such a service has been offered north of the border, and last night at least eight Scottish health boards said they would consider funding the treatment on a case-by-case basis.
Health campaigners said they were delighted an end was in sight for the misery suffered by many couples who face the choice of not having children or conceiving a baby with a potentially deadly disease.
But the move has also caused controversy with church groups and ethicists warning the tests could be the first step on the road to eugenics – creating a "perfect" population.
The development follows the recent announcement of the birth of the first child in the UK to be selected as an embryo to be free of a gene linked to breast cancer.
The Scottish testing service is being launched later this year by the Glasgow Centre for Reproductive Medicine (GCRM), which has set up a link with a laboratory in England.
Using standard IVF techniques, couples will give their own eggs and sperm to create embryos in the Glasgow laboratory. A single cell from each embryo will be sent to the Care Fertility Clinic, Nottingham, to be tested for a specific genetic risk. Embryos guaranteed free will be implanted in Glasgow and the rest discarded.
The GCRM hopes to start by attracting one or two couples every month but ultimately hundreds could benefit annually.
Marco Gaudoin, the clinic's medical director, said: "It's hugely exciting and I think it has huge potential. For example the gene that causes breast cancer is not uncommon in Scotland.
"There's an ethical debate about how far we go. My view is that this is for genetic diseases. We are not screening for brown hair or for the perfect human person."
The treatment is so highly specialised that Scottish couples currently have to travel hundreds of miles south of the border for treatment.
Yesterday, health boards across Scotland confirmed they would consider funding couples to have preimplantation genetic diagnosis (PGD). NHS Forth Valley said requests would be "considered on a case-by-case basis in view of the individual clinical details".
Conditions that can be "screened out" include cancer caused by the BRCA1 gene defect. Others include cystic fibrosis which causes problems with the lungs and other organs. There are also rare
conditions such as fragile X, which causes physical and learning difficulties, and certain types of anaemia.
Kath McLachlan, a clinical nurse specialist at Breast Cancer Care, yesterday welcomed the development. She said: "Those carrying the faulty BRCA1 gene will be very interested in this latest development, which gives them another option to consider when starting a family.
"However there are many complex issues to take into account before undertaking PGD, and the decision will finally come down to an individual's personal ethics."
Helen Macfarlane, director of the Butterfly Trust, a Scottish support group for families with cystic fibrosis, said: "Cystic fibrosis sometimes restricts life choices for families and we would always aim to help increase choices that may improve quality of life.
"We recognise that preimplantation genetic diagnosis offers choices for carriers of the cystic fibrosis gene. This can be a liberating opportunity for some families and an undesirable option for others."
"We are here to offer support to families when they need it. Our approach to service provision is non discriminatory and our support is offered to families whatever their personal choices."
But Dr Calum MacKellar, director of research for the Scottish Council on Human Bioethics, said: "A societal discussion should take place relating to PGD because it develops the concept of eugenics and the positive genetic selection of in dividuals."
A spokesman for the Catholic Church in Scotland warned that the danger with the technique was that in the future far less serious illnesses would be screened out of the population.
He said: "This is not a cure for any disease, but a way of destroying those afflicted at the earliest stage of life. It is completely unethical and shouldn't be supported."
Case study: couple won't take a risk with their second child
The dilemma faced by Cassie Watson and her partner Stuart Wren goes to the heart of the designer baby debate. The couple have a beautiful two-year-old daughter Chloe, but she suffers from cystic fibrosis and her parents do not want to bring another child into the world with the disease.
Cassie and Stuart are considering preimplantation genetic diagnosis (PGD) to help them guarantee a healthy child – and soon a Scottish fertility clinic will offer the screening service, which is capable of detecting up to 200 conditions.
But the issue has raised a huge moral debate, with the main concern the prospect that, in future, even slight imperfections could be "screened out" of the population.
Chloe, now two, has a mild form of the disease, but Cassie and Stuart, from Stranraer, know that if they have another baby it has a one-in-four chance of having the disease – a risk they are not prepared to take.
Cassie, a 28-year-old fund- raiser for the cystic fibrosis support group the Butterfly Trust, said: "We could go down the natural route and have a test at 11 weeks of pregnancy to check the unborn baby for the condition. If it is found to be positive we could carry on or have a termination. We could use donor eggs or we could have PGD."
Cassie would be unwilling to undergo a termination so she is considering PGD. She added: "I would feel irresponsible if I did not do something to stop this happening again. Everyone will have their own view on this, but my view is that this is what to do."
Karen and Neil Coates, from Chesterfield, Derbyshire, are expecting a baby in July free of muscular dystrophy that affects their 16-year-old son Jack. Karen, a 38-year-old sales assistant, had PGD at the Nottingham Fertility Clinic last year. She underwent a termination in 2007 when tests revealed the unborn child was a sufferer. She said: "We saw Jack change from an active toddler to a child who was falling down at his school sports day then become a wheelchair user who needs help having a bath and wiping his bottom. It's not very nice and I don't want to put anyone else through it."
Preimplantation genetic diagnosis is currently available on the NHS in Scotland, but only in a limited form.
A future possibility is testing the embryo for a variety of health problems with gene mutations. However, it is unclear whether this will ever be allowed because there may simply be too much opposition to the move.
How about this scenario, just to be the devil’s advocate?
A couple are both carriers of Tay-Sachs, a degenerative neurological disease that strikes a seemingly normal baby at about nine months, and causes blindness, seizures, paralysis, retardation and death by three or four years. They opt for PGD, but do not discard the affected embryos, instead freezing them until a cure is available, hoping that this will come while they are able to bring them to term, even though the cure is decades off (research is at a standstill now because PGD, CVS and amniocentesis so effectively deal with the disease by eliminating the affected individuals at some point before birth.)
Is PGD with this intention morally acceptable? PGD and freezing is the only method of giving the affected embryos a chance at a normal life, even though only a small chance.
Why would there be more than one embryo and why would it not be implanted in the womb, normally, the way God intended?
“Is PGD with this intention morally acceptable? PGD and freezing is the only method of giving the affected embryos a chance at a normal life, even though only a small chance.”
From a Christian perspective, it is moral if you can find a woman who will eventually want the embryo emplanted in them.
But this seems impractical because you would need millions of women to give birth to all the frozen embryos awaiting treatment.
If the environmentalists are right about our toxic environment causing infertility, that may not be a problem in 20-30 years.
I always wondered why those in “Children of Men” didn’t resort to that solution with the millions of frozen embryos in storage world wide in the current day. Unable to make new babies might not preclude giving birth to “snowflakes”.
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I believe the Catholic Church would say no.
There generally is more than one embryo with IVF. Ovarian stimulation can produce a dozen ova; the process has risks to the woman; ova don’t freeze well; embryos do, relatively speaking. Hence the frequent creation of multiple embryos at each attempt.
If an embryo has a genetic disease, lethal at an early age, that developing human being might have a better chance if it waited in frozen storage, for twenty years, until the couple were fifty? for forty years until they were seventy? and a cure were found. Seventy y.o. women have given birth with donor eggs, etc.
Just the ramblings of an idle mind: under what circumstances would PGD be morally legitimate? Could it be used to save a life, instead of ending it very early? Thus arose the above scenario.
I know the Catholic Church would say no. No IVF at all. Adopt your children, or accept the 1 in 4 chance of a lethal recessive if husband and wife are both carriers.
What if you sniped that little 8-cell embryo out of its mother’s womb before it attached, tested it, put it back if all was well, or froze it if not? Would that be legitimate? Pre-natal surgery is.
I had occasion to investigate the Church’s teachings on fertility and pregnancy, and the labyrinthine reasoning I encountered there has affected my mind :)
The Orthodox Jews circumvent some of the agony by a pre-courtship screening organization called Dor Yeshorim (bad genetic match, marry someone else), and between that and the willingness of the less orthodox to use prenatal testing and abortion, no babies with Tay-Sachs have been born to Jews in the US in recent years.
Yeah, I heard an unintentionally funny talk show, where the poor sympathetic host kept getting confused by the whole thing, not understanding how creating life could be so bad when life was so precious, etc.
Of course, God makes it difficult when He discards more than half of children so early in the game.
Now Sarai, Abram’s wife, had borne him no children. But she had an Egyptian maidservant named Hagar; so she said to Abram, “The LORD has kept me from having children.
Then Abraham prayed to God, and God healed Abimelech, his wife and his slave girls so they could have children again, for the LORD had closed up every womb in Abimelech’s household because of Abraham’s wife Sarah.
Isaac prayed to the LORD on behalf of his wife, because she was barren. The LORD answered his prayer, and his wife Rebekah became pregnant.
As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.
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