In the wake of a recent application being approved by the Human Fertilisation and Embryology Authority (HFEA), scientists are speculating about the possibility of being allowed to edit the DNA of human embryos for the first time and the significant knock on effects this could have for the eradication of genetic disease.
The application causing all the excitement was lodged by Dr. Niaken who is a stem cell research scientist at the Francis Crick Institute in London, whose research looks at early miscarriage and the development of an embryo in the very first stages after fertilisation. The decision made by the HFEA specifically grants Niaken to study the embryos up to 14 days and with the sole purpose of research only; the embryos are not to be implanted. This research may enable IVF treatments to become more successful and therefore enable more women to carry children to full term, but the decision represents a step toward something more significant.
Under the terms of the decision, Niaken will be able to genetically modify the embryos so long as the 14-day limit is not passed. This may then in fact mean that we are not far away from permitting scientists to be able to alter embryonic DNA in order to avoid or eliminate genetic disease. About 4% of births in the UK will sadly result in the child carrying a genetic defect that will either result in an early death or a severely debilitating illness. Being able to effectively correct such a genetic defect before birth will enable us to radically improve the lives of many people. Yet, this raises the same questions as in previous arguments about genetic modification – are we going too far in selecting the genes of our offspring? Are we creating designer babies?
This decision follows the recent discovery that in fact a London sperm bank had effectively been running a policy of turning away donors who suffered from dyslexia. This was met with fierce criticism. Steve O’Brien, chair of the Dyslexia Foundation, claimed that the policy of the sperm bank was a form of eugenics:
“It’s trying to say that dyslexics shouldn’t be in society. But we’re moving into a visually dominated world of Instagram and YouTube where given the right tools it is no longer an issue, because people with dyslexia are right-brained often with hyper-visual skills…By suggesting you can’t donate sperm because you’re dyslexic will knock people’s confidence. This kind of stuff is what makes people shy away from admitting they have dyslexia and asking for help.”
However, the types of diseases that have been proposed at preventing through methods such as correcting DNA are somewhat different to dyslexia as Professor of Molecular Genetics at the University of Surrey, Johnjoe MacFadden argues:
“If those of us with mostly healthy children are worried about the ethics of gene editing, then we should ask the parents of children born with haemophilia, cystic fibrosis or muscular dystrophy whether they would have used this kind of technology if it had been available to them. If science can be used to eliminate human suffering, then let’s get on with it.”
But it seems that where the line is drawn between diseases that would clearly damage the quality and quantity of life experienced and those that perhaps just require the sufferer to adapt to the particular society they grow up in, is blurred. There are always going to be clear cut cases, for example it may be true that having particular aesthetic attributes may enable someone to live an easier life within a particular society but we may rightly be wary at allowing parents to simply design their own baby based on their particular wants for how they think their child should look. On the other side of things, being able to eradicate genetic diseases such as cystic fibrosis which cause an enormous amount of strain on a child’s life and significantly reduce the lifespan of that child, seems like a positive achievement for DNA modification. But we are always going to see cases appearing that blur the lines – dyslexia and ADHD, for example.
This begs the question: who draws this line and on what grounds?
If you are interested in Medical Ethics issues such as these then you may be interested in the Medicine Summer School.
