Mark Henderson, Science Editor
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Two couples whose families have been ravaged by breast cancer are to become the first to screen embryos to prevent them having children at risk of the disease, The Times has learnt.
Tests will allow the couples to take the unprecedented step of selecting embryos free from a gene that carries a heightened risk of the cancer but does not always cause it. The move will reignite controversy over the ethics of embryo screening.
An application to test for the BRCA1 gene was submitted yesterday by Paul Serhal, of University College Hospital, London. It is expected to be approved within months as the Human Fertilisation and Embryology Authority (HFEA) has already agreed in principle.
Opponents say that the test is unethical because it involves destroying some embryos that would never contract these conditions if allowed to develop into children. Even those that did become ill could expect many years of healthy life first.
Some critics fear that the tests move society farther down a slope that will lead ultimately to the creation of “designer babies” chosen for looks or intelligence.
However, the first patients say that the technology will allow them to spare their children a devastating genetic inheritance. One couple in their twenties, who would only be named as Matthew and Helen, have lost three generations to breast cancer.
Last May, the watchdog ruled it acceptable for doctors to screen embryos for genes such as BRCA1, which raise the risk of cancer in adulthood by between 60 and 80 per cent. Embryo screening was previously restricted to genes that carry a 90 to 100 per cent chance of causing disease.
The application is the first to be made under the new regime after a year of research to identify the precise mutations that affect Mr Serhal’s patients. Approval is likely in three to four months, once the HFEA has confirmed that the tests are reliable.
Women with a defective BRCA1 gene also have a 40 per cent risk of ovarian cancer. It is linked to prostate and breast cancer in men, who can also inherit it benignly and pass it on to their daughters.
Mr Serhal said that objections to screening ignored the harrowing family histories of the patients he is seeking to help, who have a chance to ensure their children avoid similar experiences. “We are talking about a killer that wipes out generation after generation of women,” Mr Serhal said. “You can have a preventive mastectomy, but this is traumatic and mutilating surgery that does not eliminate the risk.
“What we are trying to do here is to prevent this inherited disease from being a possibility in the first place. At least with these people’s children, we can annihilate the gene from the family tree.” Genes have also been identified that raise
the risk of conditions such as obesity, heart disease and mental illness. However, more than one gene is usually involved and the HFEA will not currently approve screening for these.
Supporters of screening point out that patients must use IVF even if fertile, and that many couples carrying defective genes will not choose this option. The HFEA code of practice also makes it clear that screening is allowed only for serious conditions.
When the licence is awarded, the couples will have IVF. This will allow a single cell to be removed from the embryo at the eight-cell stage, and tested for the defective BRCA1 gene. Only unaffected embryos will then be transferred to the womb.
Though the HFEA decided last May to accept applications to do this, after a public consultation was supportive, it has taken Mr Serhal’s team a year to develop a robust test for the specific mutations in the gene that each family carries.
The HFEA will not reconsider the ethics of screening, but will ask independent experts to review the reliability of the tests before awarding a licence. “We are very confident because the HFEA has already said in principle that this is OK,” Mr Serhal said.The HFEA said: “Each application for conditions such as this must be considered on a case-by-case basis because of the difference in the way that families are affected by these conditions.”
Josephine Quintavalle, of the embryo rights group, Comment on Reproductive Ethics, said: “There has to be a better way of curing disease than this. It is very likely that in the not-too-distant future there will be a way of treating breast cancer that doesn’t rely on eliminating the carrier instead of curing the disease.”
Last year, The Timesrevealed the conception of Britain’s first “designer baby”, screened as an embryo for inherited cancer. The baby has since been born healthy, free from the gene carried by her mother that would have given her a 90 per cent chance of developing retinoblastoma, an eye tumour.
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Life has an ultimate end. No matter how hard we try to prevent death, whether by means of cancer, accidents, murder, etc... it is inevitable. Instead of going through your embryos like going through a stack of playing cards be grateful for what you recieve.
sheena, san jose, ca
I'm all for this method of preventing offspring inheriting these dodgy defective genes but to call them "designer babies" is not misleading... thats what they are! It's just that we think of choosing babies with blonde hair blue eyes etc. when we hear that term. I'm in total support of finding ways to get rid of diseases such as cancer and this is a good way to do it. I just hope it doesn't reach the stage where people will use these technologies for cosmetic reasons.
Katie, York,
my grandmother and her little sister were dead in their early thirties. i am 29 and brca positive. i'm also an atheist, so am i allowed to comment?! until you live with it, how can you judge? i would love to spare my children. until you live with it, undergo screening every three months, knowing the screening is hardly perfect, that we get the most agressive cancers at the earliest ages... these mutated genes are tumor suppressor genes, my cancer preventer genes... they don't work... to live with this anxiety, this fear, undergo these surgeries... how can you judge what we want for our children. frankly, its disgusting.
Nicole, san diego, ca
Why do we strive to know more about our genetic material if we are reluctant to use the new discoveries and technologies to eradicate CANCER? As a breast cancer survivor I fully support the idea. It is very misleading to call these embryos "designer babies". As a parent why would you want your child to go through so much pain and emotional turmoil if you can do someting about it. In my opinion it would be unethical not to.
Mihaela, Coquitlam, Canada
I agree with James shame on you The Times,
i really am dissapointed to see that you are using these tabloid brands. Besides, they are not designer babies, they are genetically engineered embryo's. I personally feel that that title sounds more interesting.
xx cheers
Robert Geary, London, England
i am also a student doing GCSE coursework on the subject of designer babies and i disagree with it on principle - but then i don't have a genetic disease or a child with a deformity so i can't really give an appreciative opinion. But i do have a question - is there any real difference between designing a baby and human cloning for example and why are designer babies more socially acceptable?
isabella kerr, london,
Im doing a gcse coursework on designer babies, and i believe that "designer babies" should have a limit. Screening embryos, and removing ones which have genes linked with diseases is a great idea to begin getting rid of things like Breast Cancer, but i worry it will go to far. The parents have a choice whether to go through with this or not, but if its stop their children having to suffer then im all for it
Heather, Wallasey, Uk
Re use of term 'designer babies', how disappointing that the Times has to resort to tabloid headlines to draw attention. Incompetent and irresponsible journalism at its worst.
James, London, UK
I think that this is a matter of personal choice for the parents to decide. No-one can possibly know (or have the right to say) what is best in this case. If we allow IVF and abortion, I don't really see why this is so much different. It is a horrible position to be in, and I give all my best wishes to those having to make such heart-breaking decisions.
Katie Newens, Oxford,
1) Evolution has done a pretty good job at perpetuating the species by natural processes. Conscious selection of traits for the next generation will only limit our biodiversity, and that brings more costs than benefits to our species in the long run.
2) We should not confuse curing a disease with stamping out life at its very earliest stages.
3) Do these parents wish they had been destroyed when they were still in the embryonic stage?
4) It seems all too likely that when such procedures become popular, they will either be mandated or expected. Government and health providers will work against a family who does not believe it is right to destroy an embryo since such a family will appear to put an unnecessary burden on the society.
PeterTerp, Washington, DC, USA
This is an example of inaccurate journalism. These are not "designer" babies in the sense that someone decided to remove some gene and replace them with other genes in order to "design" the child to order. This is simply an application of PGD (pre-implantation genetic diagnosis) to select which embryo did not carry the genes for for breast cancer. Calling such screening "designer" babies is not correct.
kurt, Portland, USA
A woman never got breast cancer and had a complete hysterectomy at 45. She lived to 84 years of age, a very healthy life. She had the BrCa1 gene. She lived longer than many of her cousins, who didn't have the gene.
A woman had a dozen children but died of ovarian cancer in 1920. She didn't know she had the BrCa 1 gene. One of her grandchildren became a prominent oncologist who discovered the cures for many thousands of patients for a specific type of cancer.
However, if Mr. Serhal had counseled the 2 females parents, they would have been aborted. Contratulations, Mr. Serhal, you just condemed many thousands of people to death because of what you've done.
Bob Baker, Cherry Hill, USA/NJ
This is fantastic news.
Carriers of these defective genes in our day and time would think twice before passing the genes on. With this breakthrough they are given the opportunity of eliminating the curse of passing genes predestining mothers to die of cancer with still young children - or having breast removal operation in their early twenties to prevent cancer.
Eight cells are not - and never will be - a human being. Nature aborts probably 40-50% of all embryos at the first stages. Probably all left-handed are one half of a pair of identical twins - as is my left-handed daughter. I can not grieve for her possible twin - probably aborted in the first 2-3 weeks of pregnancy by mother nature - unnoticed, and for natural reasons presumably due to genetic defect
If designer-baby means eliminating genetic fault - and is not otherwise used, welcome advance in science.
Gerald , Aarhus, Denmark
"Some critics fear that the tests move society farther down a slope that will lead ultimately to the creation of designer babies chosen for looks or intelligence."
People choose mates for looks and intelligence all the time, with the unconscious desire to see same in their hypothetical offspring. Who are these luddite mandarins to say that enhancing the genetic stock of their offspring is forbidden?
Paul Allen, Menlo Park, USA, California
"we can annihilate the gene from the family tree. Genes have also been identified that raise the risk of conditions such as obesity"
This is fantastic, but late. Imagine the world could have been spared the likes of Rosie O'Donnell and Michael Moore ...
Matt, Atlanta, GA
Orwell would nod to that euphemism.
"Screen" really means kill the ones you don't want.
Another foot down the slippery slope in a new post-human future.
Kevin G. McDonald , Halifax, Canada
How many have to die to get a "perfect" baby. This is just another way to cheapen human life, i.e., show that the test "saves" the child from some horrible disease even though they will never know if the child would have contracted the illness. But the promise of safety apparently warrants the taking of other human life. This promise is the same one offered for embyonic stem cell research. No results to date, no rug companies willing to fun the research but lots of promises of miracle cures in the future. All they need is the okay to destroy human life to get the stem cells needed for the research. And ignore the successes in adult stem cell research. This just promises to move us away from our basic humanity in a search for a "painless" happy life. An is anyone thinking of the cost?
John, Webster, New York
Humans know too little and assume too much about genetics to assume these "techniques" will yield tangible benefits. And that's ignoring the contra ethical arguments.
chris, new york city,
Is this a joke??? So what will they do with the higher risk embryos? I'm sure there's someone out there that is willing to birth them. Maybe they'd still have a chance to beat cancer. Maybe they'd never have cancer at all!!!!! Unbelievable. Wow.
Jill, Austin, Texas
Quoting the article,
"At least with these peoples children, we can annihilate the gene from the family tree.
If they were honest they would say
"We can annihilate at least these people's children before a sickness we have little control over might appear"
Always dancing around the real issue that an embryo is a human life fully capable of all stages of development, i.e. a human being.
David Sutherland, Lake Forest, CA
Wait till the baby Girl later takes oral Contraception and then develops Breast cancer..... the scientist will already be dead! July 29th 2005 the WHO stated that Oral Contraception is a Group one Carcinogen causing agent!
Let see how gene removal effects that! Lets see if the see that this Gene doesn't control something else in the Body as a secondaty Job... This is Bad!
Kevin in Kuwait, Kuwait City, Kuwait
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