Ok this isn’t anything to do with visual psychology, but medical and scientific ethics is also something I think about quite a bit both in relation to medical funding issues and also with regard to the question of how much it’s ‘right’ for us to interfere with nature.
Obviously because of my work the area I’m most interested in relates to vision, and recently I’ve been reading a lot about inherited eye disease.
More than 60% of cases of infant blindness are caused by a range of inherited eye diseases including: congenital cataract, congenital glaucoma, optic atrophy, retinal degeneration and malformation of the eye and socket. In adults the leading causes of blindness are glaucoma and age-related macular degeneration (AMD), both of which appear to be inherited in a large percentage of cases. So it was with interest yesterday that I read the joint statement from a group of leading research organisations, calling for a debate about preclinical research, including human genome editing techniques. Genome editing involves replacing or removing sections of DNA from a genome using ‘molecular scissors.’ In the UK at present it is legal to manipulate the DNA of a human embryo up to fourteen days old. At fourteen days the embryo has to be destroyed.
These techniques are evolving rapidly and over the past two years they have become extremely sophisticated. Scientists can already splice and alter genes with an incredible degree of accuracy (almost 100% efficiency with some techniques) in a wide range of mammals including mice, pigs and cows. We can therefore reasonably assume these techniques might work equally well in humans. There is a real possibility that in the not-too-distant- future we would be able to treat the genetic conditions which cause blindness as well as many others. Of course more research needs to be undertaken and here is where it all starts to get to be a bit of a minefield, hence presumably the need for the recent joint statement. This one subject has the potential to be divisive and controversial both within the scientific and medical communities as well as among the wider general population. After all, just because we can do something doesn’t mean we should.
In the US the National Institutes of Health (NIH) have categorically refused funding for anything in this area. They will not condone any research on early human embryos.
Is this a mistake?
In addition to possibly being able to treat or eliminate genetic diseases, the techniques are powerful in their own right. They provide understanding of basic human biology. Tightly regulated research (as we currently have in the UK) may be a good thing if it helps us to understand genetic conditions. Researchers have mapped several genes for glaucoma and are starting to identify those involved in AMD and Retinitis Pigmentosa – a degenerative disease of the retina which causes night-blindness and gradual vision loss. But if there is a good reason to do so should we then go on to use these techniques in embryos which will be allowed to develop to full term?
We need to ask whether we are happy changing embryos at a genetic level which might provide immediate benefits to that developing embryo, but which might then be potentially passed on to subsequent generations. It’s an important ethical and scientific debate and it needs to be taking place right now.