Last Wednesday, Professor Simon Baron-Cohen of the Autism Research Centre called for a national debate about the consequences of screening for autism spectrum disorder in the womb. Then on Friday came the news that the first baby in the UK tested before conception for a genetic form of breast cancer has been born. We invited medical bioethicist Dr Megan Best to comment.
It was good news - a healthy baby girl with both mother and baby doing well after the birth. Who would not be pleased? We also heard that the baby girl in question is the first to be born in the UK following testing before conception for a genetic form of breast cancer.
It is difficult to assess the ethical issues in a case like this because they involve good things - things like freedom of choice and freedom from disease and suffering, things which we would all desire if given the choice. We are told that the cancer in question has 'blighted the family for generations' and, of course, we understand that the family would be pleased to be free of it.
But are these the only issues that are involved in this case? Despite the difficulty in assessing this event from an ethical viewpoint, I would think that our society needs to do precisely that now, before such practices become widespread, to consider whether this is the direction which we want medical technology to take.
We are told that this girl was tested before birth. So, presumably, were other embryos created in the IVF process, some of which would not have so happy an outcome. The presence of the breast cancer gene would have meant that some of these embryos would have been discarded because it was decided by the parents that the embryo in question would be better off never being brought to birth rather than to have been born with the breast cancer gene.
Let's think about that - there was a conversation at some point in which an unnamed embryo could not take part because it had no voice and there was no recognition that it was a human with personal interests. Never mind that disabled members of our society have articulated the possibility of leading a fulfilling life despite the presence of a disability, the HFEA have allowed the screening of embryos to make sure that we limit the number of children born with genetic abnormalities. Besides, parents are always trusted to decide in the best interests of their offspring.
I do not question the motives of parents who, of course, want what they think is best for their children. But what does this process involve?
Pre-implantation diagnosis (PGD) involves taking one or two cells from an 8-cell embryo and screening the DNA for genetic abnormalities. It is a process which has never been scientifically validated, so we cannot be sure about how reliable the results are. What we do know about the BRCA1 gene is that having it in your DNA does not guarantee that you will ever get the breast cancer. If you do get it, it will not develop until adulthood, at least 20 years away for this little girl and her embryonic siblings, by which time it is possible a cure may be available. Scientists are working hard to develop such a cure as we speak.
Is this how we want genetic technology to be used? There are alternatives - let all the embryos be brought to birth, by all means use the technology to test for the BRCA1 gene, and keep an eye on those with the increased cancer risk so treatment can be started early and the outcome is good. Let's use the genetic knowledge to develop treatments which will help those born with increased risk of disease, rather than create an environment where we think it would be better had they never been born. We aren't even sure that they will ever get sick.
Our knowledge of genetics is embryonic. The BRCA1 gene has survived despite its association with a terminal disease. Could it be that it is linked to a genetic characteristic which is helpful to humans, in the same way that the gene responsible for causing sickle cell anaemia also confers immunity to malaria? Are we ready to decide which genes should be eliminated from the human gene pool?
As a community, should we not take a deep breath and reconsider whether in fact this is a good way to proceed, whether the eugenic thinking underlying this use of genetic technology is what we want to encourage.
We will never be able to remove all disability and suffering from the human race by discarding genetic misfits. Most disability in the community occurs after birth, anyway, from accidents with no genetic link. Let's work on treating it as it appears rather than depriving those 'at risk' embryonic humans of a chance of life. What a great day when all children, regardless of their physical characteristics, will be welcomed into our world with the assurance that that it is good that they are with us.