A baby born in Britain last week was selected as an embryo because she didn't have a high risk of developing breast cancer, raising ethical questions about how far we should intervene with technology to improve health. Claire O'Connellreports
EARLIER THIS month, a baby girl was born in a London hospital. But even before her parents got to rejoice over the healthy new arrival, a storm had been brewing over the pregnancy.
Why? Because this girl is the first baby born in Britain to have been “selected” on the basis of not having a high risk of developing breast cancer. The move has sparked widespread debate about the ethics and future applications of embryo screening.
In this case, members of the father’s family carry a faulty version of the usually protective Brca1 gene, making the female carriers much more susceptible to early onset breast cancer.
“For the past three generations, every single woman in my husband’s family has had breast cancer, as early as 27 and 29,” the baby’s mother said last year. “We felt that if there was a possibility of eliminating this for our children, then that was a route we had to go down.”
So the couple opted for choice over chance: they underwent in vitro fertilisation (IVF) and the resulting embryos were screened for the defective gene.
By taking a single cell from each three-day-old embryo and examining its DNA, doctors at a London clinic selected two embryos with normal Brca1 genes and placed them in the mother’s womb. One went to term and was born earlier this month.
Such preimplantation screening technology is not practised in Ireland, but elsewhere it has been used to diagnose embryos with specific genetic disorders such as cystic fibrosis or Huntington’s disease.
But screening embryos for Brca1 selects on the basis of a risk rather than a definite disorder, and while a Brca1-screened baby may be free of that inherited risk, she may still develop breast cancer spontaneously.
So the approach has raised questions about where the line should be drawn, and prompted forecasts of “designer babies”.
“Embryo selection is an area that has to be approached very conservatively,” says gynaecologist Dr Tony Walsh, a medical director at the Sims International Fertility Clinic in Dublin. “It comes from a poor backdrop of enormous abuse. The idea of selecting good people, all this pseudoscience led to the catastrophe of the elimination of millions by the Nazis. So anything to do with screening naturally makes a lot of people very standoffish about it. And I think with reasonable justification.”
In Ireland the unclear legal status of the embryo in Ireland has been a factor too, explains Dr Deirdre Madden, a senior lecturer in law at University College Cork. “There has been a traditional reluctance to do anything in relation to the embryo in IVF other than to simply transfer it back to the uterus because doctors are very unclear as to the status of the embryo, whether it was protected by the Constitution,” says Madden.
Ethical issues also abound. “There is an argument that we should try to offer everyone a chance for normal health and give them as clean a slate as it is in our power to do,” she says.
“But what does it say to people who are living with a disability – that if we had had the technology then you wouldn’t have been born and it would be better for society if you hadn’t been? That sends a very negative argument out that none of us would want.”
The debate runs the full spectrum, she notes. “From the parent’s point of view is much less trauma because it avoids making the decision to have an abortion if that’s what the parents decide,” she says. “But from the point of view of those who believe that any kind of selection is wrong it doesn’t matter whether it’s prior to or during the pregnancy, selection is wrong full stop.”
Overall, Madden sees a need for greater public awareness about genetic screening and its capabilities. “There’s a misperception that if you have genetic screening of an embryo that this is somehow a genetic check-up that will guarantee health for the rest of that baby’s life. And that’s not the case,” she says.
And she criticises sensationalist media reports. “I bristle when I hear the term ‘designer babies’ because it’s so far from reality as to be completely nonsensical. That would depend on a huge amount of genetic research being done over the next number of decades to try to pinpoint the genes for these desired characteristics. And to have a child with musical talent or sporting ability you would have to get the gene from somewhere else or artificially create it and inject it into the embryo, and that’s light years away, so designer babies are not even on the cards.”
However, as research progresses, Madden says we need to prepare ourselves for advances. “From a legal and ethical point of view it’s good that we deal with issues now pro-actively so that we know what the arguments are if and when the technology does become available,” she says. “It’s about drawing lines between what’s acceptable and what’s not.”
Madden would like to see a regulatory body set up in Ireland, and the use of guidelines rather than legislation to allow the flexibility to adapt to new research findings. She was a member of the Commission for Assisted Human Reproduction that in 2005 recommended that IVF embryo diagnosis be allowed in Ireland for the treatment of serious genetic disorders.
“That recommendation has gone to government and will hopefully be acted upon in due course,” she says. “But the difficulty would always be how you would define a serious genetic disorder, and that will undoubtedly change over time depending on what disorders become treatable and what society considers to be serious.”
With so much legal and ethical uncertainty around embryo selection, Walsh favours a different approach. “I don’t see a future for embryo screening in Ireland in the near future, but I do see a future for screening individual cells,” he says, describing an alternative technique to look for large abnormalities in DNA of the “polar body” of unfertilised eggs, and selecting normal eggs for fertilisation. “I would like to bring that into our practice because you are just analysing an egg.”