Genetics: Brave New World or just another hospital specialty?
When I was a research biochemist, I used to enjoy the occasions when I would meet someone new, perhaps in the pub, and they would ask me what I do for a living. Upon hearing the word 'biochemist', you could see their face turn to stone and the panic come over them in a wave as they tried to think of a follow up line that did not involve having to ask what a biochemist is or does. More often than not, this thinking time would rapidly become a tumbleweed moment and I wish I had never said the dreaded B word. Apparently though, if you are a genetic counsellor, rather than a tumbleweed moment, one of the common responses you get is, "so you tell people not to have children then?". And this is how the October Birmingham Café Scientifique started.
Our guest this month was Peter Marks from the Birmingham Women's Hospital and he is by profession a Genetic Counsellor. Unlike many other health based disciplines, it would appear that there is not a 'private' equivalent of Genetic Counselling and I really quite like that, although I am not altogether sure why. It makes me feel that my genes are not for sale and that our National Health Service cannot be beaten when it comes to genetics.
What Peter does (and indeed other counsellors) is to offer guidance and clarity on matters concerning your genes (usually to do with how you got yours and which ones you are going to pass on). Often this involves discussing risk, which is a tricky concept to get across to people, so counsellors will often bring in a patient's friends and family to help, if they deem it necessary. One of the really nice parts of the evening was that we left with the distinct impression that this was a discipline that really cared about the patients that it interacted with.
One of the examples that Peter gave us, was of a child who had developed an inherited condition and a grandparent was now racked with guilt. I am sure we can all attempt to imagine how this might feel for that grandparent even if a rational mind tells us that there is nothing that can be done about it.
Apparently though, this grandparent can receive counselling and testing through a hospital genetics department to discover if the grandparent does carry the genes in question. I like this and it strikes me that this is one of the great strengths of a National Health Service, in that the results of this test in no way affect the child. For the grandparent however, there are two options: A) peace of mind if they are found out to not be a carrier of the condition or B) support and counselling if they are the carrier. This is the holistic approach to wellbeing and to that family, it will be priceless regardless of the outcome. The child and its treatment will of course be the primary concern and the genetic counsellors will be heavily involved in that during the development of the child, but I really like the idea that the whole family is supported.
A more common scenario might be that a couple want to have a child but are aware of a condition within one or both of their families. This is where the skill, tact and diplomacy of genetic counselling comes in, working with families and individuals to explore the many options that are available to them and looking into the future to determine what may or may not happen. There are few certains though, few black or white decisions, but more a greyscale of risk. Different people tend to interpret risk in different ways and it is up to the counsellor to make sure that that whoever is sat in front of them, understands the choices that they are making. What counsellors will not do though is tell you whether to have children or not!