Learning Difficulties and the Guardians of the Gene

Abstract

Genes exist. But how do we know? Because there is a technology that has told us. Scientific techniques led us to genes, and they determine the way we talk about them. Technology seems to drive our ethical and thus our political thinking about them. For example, chorionic vus sampling (CVS) is a single technique which can be used to locate two relatively common conditions: cystic fibrosis (CF) and Down’s syndrome (DS). What, apart from the technique itself, do they have in common? Cystic fibrosis interferes with the vital operations of breathing and digesting; it causes what we perceive as physical suffering. These are the grounds on which the justifiability of a termination of pregnancy is open for discussion. Down’s syndrome, on the other hand (usually caused by an extra copy of chromosome 21, i.e. trisomy-21), involves the empirical observation that nobody with an extra chromosome 21 in every cell has yet — at least as far as we know — been capable of passing an ‘A’ level examination. Is this suffering? (The minority of cases where there are added physical complications is a separate matter.) Clearly, there has to be a completely different discussion about the justifiability of terminations of pregnancy in this case, but the differences between CF and DS are smothered by the fact that we associate them with a single technique that identifies both conditions.