21 May 2012
ByAppeared in BioNews 657
Channel 4, 7-13 May 2012
Presented by James Dowson, Joe Fletcher, Elaine Franklin, Nishad Gudhka, Rev Joanna Jepson, Dr Shane McKee and Dr Geeta Nargund
These seven short films provide little more than a string of provocative quotations, which do little in themselves to foster a good debate on a complex issue. While the speakers' opinions and experiences provide a range of views on the issues raised by genetic screening, there is a lack of consistency in some of the arguments. The question posed in the title runs loosely throughout, but the films lack collective coherence, with little linkage between them. However, the diverse range of speakers from professional, patient and religious backgrounds does make for a variety of competing views.
Reverend Joanna Jepson believes that 'babies are a gift and not a product; and we should not be interfering'. She spoke about judicial reviewing a decision made by the police not to investigate 'properly' an abortion of a 28-week fetus after it was discovered it had a cleft plate - a similar condition she had herself suffered from and had corrective surgery in her late teens.
Reverend Jepson, who was pregnant when the film was made, tells us that were an ultrasound scan to point to a high risk of Down's syndrome, the doctors 'would paint a prognosis that is all medical, but no doctor is ever going to paint a picture of the fullness of life and relationship that comes through family life'.
Elaine Franklin was raised as a Christian but her relationship with God changed after she discovered that the she had passed the BRCA-1 genetic fault for breast cancer on to her daughter. 'I've heard people screaming through the pain of cancer and its something you do not forget... I believe that embryo selection is justified'. She said that while she used to draw a line she thought perhaps she would not cross, but because of her circumstances now, she would cross such a line for the sake of future generations.
James Dowson, a Christian and pro-life activist, stated his opposition to the concept of designer babies. 'Clinics that came up with the genetic screening programme, they've learned from their original purpose of screening disease to now offering genetically-engineering children to wealthy parents', he said. James says we have to step back to see how the technique is to be used - whether it is for the benefit or detriment of society.
Dr Shane McKee is described as an atheist, geneticist and father. Dr McKee starts by saying 'what we're trying to do is offer families the chance to do what they believe is ethically right'. He states the importance of making a distinction 'between the efforts we make to try to prevent a child being born with a genetic condition and the notion that we are somehow against disabled people'. He presents a hypothetical ethical dilemma: if there was a fire at a clinic, how would one choose if faced with saving either a four-year-old child or a vat of embryos? Most people would save the living child first, he said.
Nishad Gudhka, father to Harshi - an eight-year-old girl with Down's syndrome - talks about the abundance of laughter and love that Hershi brings to the family. According to Nishad and his family's Jain faith, they allow nature to take its course. 'We wouldn't have it any other way', he says. When told by doctors about his daughter's Down's syndrome while she was in utero, Nishad explained: 'You hear the options being thrown at you', including the option of terminating. 'The power to choose was thrust on us. I didn't want that power; and I don't have the right to have such power to determine whether another soul - my unborn child's soul - can continue through to birth', he said.
Finally, Dr Geeta Nargund is a fertility expert specialising in 'soft IVF', supporting and encouraging natural conception. 'As a young trainee', she said, 'I saw a women die with ovarian hyperstimulation syndrome, which can be a result of fertility drugs'. This led her to the view that fertility treatment should try to stay as natural as possible by bringing back the natural cycle. By giving a small amount of medication over a short period of time, Dr Nargund tries to mature a small number of eggs. Her aim is 'quality rather than quantity', she says. Dr Nargund raises her objection to preimplantation genetic screening as 'routine' because it means the creating of surplus embryos unnecessarily and it is extremely important that it is not 'misused to produce designer babies'. 'It is not a lifestyle choice', she says.
Joe Fletcher's daughter - a 'saviour sibling' - was screened as an embryo to ensure her DNA matched that of her brother, Joshua, who suffered from a rare bone marrow condition. Joe says 'a lot of religious people who say that we are playing God, they were sentencing our child to death'. Joe has misgivings of the terms such as 'designer babies' and 'saviour siblings', saying these are misleading. It is not accurate, he said, as you are not ticking boxes for hair and eye colour.
On playing God, Joe asks 'if you think you are playing God by doing IVF, does it also mean you are playing God if you are trying to cure cancer'? Provocatively, the short video ends: 'Josh was not built correctly. Josh had a genetic disorder... God didn't do an awfully good job so maybe someone else ought to have a go'.