Back in 1995, my 14-year-old self was sitting on the dusty floor of my all-girls’ school hall listening to a morning assembly. With the aim of promoting public speaking, each class had to give one annual school assembly speech on a topic of their choosing. That morning it was the turn of five 11-year-olds who had decided to tackle a topic beyond their years: abortion. At 8.50am on one nondescript Spring morning my whole life was pronounced worthless as they declared that mothers carrying foetuses with Cystic Fibrosis (CF) would understandably want a termination. As a CF sufferer myself, I laughed aloud at the suggestion. Even as the illness has slowly ruined my lungs over the years, my life is still definitely one that is worth living.
Yet a report out this week by the Human Genetics Commission reminded me of those thoughtless 11-year-olds. Its pronouncement that they see “no specific social, ethical or legal principles" against offering nationwide preconception screening of genetic conditions seemed, at best, ill thought through.
In its report, ‘Increasing options, informing choice’, the Commission recommends that any person should be eligible for tests to show whether they are a carrier of genetic abnormalities that could result in their child being born with illnesses such as CF or Sickle Cell Anemia. Currently such tests are limited to people who already know there is a family risk of such illnesses.
The report believes that by widening out pre-screening to every potential parent in the UK people “can make informed choices about the reproductive options available to them.” Yet these choices seem to be very limited: remain childless, have an abortion, or endure lengthy, and possibly futile, IVF treatment.
It is possible to carry out an antenatal test called Chorionic villus sampling to see whether a foetus has CF, so that the family can choose to abort the pregnancy before birth. Cystic Fibrosis is a tough illness and it cuts life expectancy by at least 50%. Yet people with CF can live a relatively normal life for long periods of time. We have active childhoods, careers of our choosing and a life lived independently. I have a great life full of amazing friends. I’ve had a brilliant education, a good career, and even now when my health is really quite bad I live with an amazing man who I’m marrying in two months’ time. Is this a life that would have been better aborted?
Moreover, it is easy to imagine a scenario where a childless couple in their fifties may look back on multiple abortions, undergone due to fear of bringing up a child with CF, and wonder if it wouldn’t have been better to have experienced parenthood with all the hardships and happiness it would have brought with it. Perhaps the knowledge that pre-screening brings may be as painful as the very grief it was aimed at avoiding.
If both parents are a carrier of the defective CF gene, IVF is the only way to be sure of not conceiving a child with CF. In a process called Pre-implantation Genetic Diagnosis (PGD) each embryo is screened to ensure it is genetically ‘normal’ before implantation in the womb: there is at best a 30% success rate. But with NHS funding currently under strain, IVF is being severely limited across the country. In the last three years, nearly one in five Primary Care Trusts (PCTs) have cut IVF funding, with nine areas refusing funding altogether. Even fewer PCTs are prepared to pay for PGD in comparison with traditional IVF procedures and privately the procedure costs £3,000 per attempt.
It would be a nightmare scenario if CF became a ‘poor’ person’s illness, only prevalent in parts of society that cannot afford private PGD sessions. What implications will this have into research for a cure, or for NHS and welfare provisions for people with such illnesses?
It is unsurprising that Dr David King, director of Human Genetics Alert, said that if the report recommendations were put into action "it will inevitably lead to young people [diagnosed as carriers] being stigmatised and becoming unmarriageable, and disabled people will feel even more threatened."
For me the recommendations of the Human Genetics Commission imply that a life with CF, or Sickle Cell, or any other serious genetic illness, is a life not worth living. Ultimately no one chooses to have CF but isn’t that different to taking active steps to avoid having a child with CF? The Commission seems ignorant of the fact that people with severe illnesses have a lot to give, both to the people who love them and the society of which they are a part.
Everyone has hardships in their life, and CF is mine, but living with it has given me strength as well as pain. Rather than encouraging people to consider children with genetic illnesses as inferior, it should be recognised that our society is in fact strengthened when it comprises a diverse range of people with their own unique way of living their life as best they can.
Thanks for writing your blog, I do find it very interesting and informative.
ReplyDeleteI believe that giving more prospective parents a choice is a good thing. I wouldn't have been born if my parents had chosen to do PGD but I am completely comfortable with that fact.
Some people in my position would choose to risk passing on their genetic condition, others would choose to terminate a pregnancy or do PGD, others would choose to not have children at all or to adopt.
There are some of those courses of action that I would never do, but I also wouldn't judge anybody else for doing them. The decisions are likely to have caused them much anguish.
I wonder where you get your stats from. At my clinic (CRGH in London) the success rates are much higher than 30% (closer to 50%) and unfortunately it doesn't cost £3k per cycle. We have been paying more like £10k per cycle.