Human Health
University of Bristol
Wellcome Trust
Recommended by:
Society of Biology
PEEP for Physics & Ethics at GCSE
 

Genes and health

Huntingdon’s disease

  Scenario:

Task:
Genetic counsellors have to take a range of factors into account when supporting people who have, or are at risk from, an inherited disease. Using the information from these four potential clients, make a list of the issues you think a counsellor would have to take into account when deciding how to work with a client.

Person 1 (female)
My father died of Huntington's Disease in his late fifties and he had been ill for about 15 years. I was 30 at the time and already had two children of my own. We had no idea that there was HD in the family until my father was diagnosed, and that was a long time after he first became ill. The tests were not so readily available in those days, and as there was no history I suppose no-one thought of it at first, not even our GP. I have thought about having the test myself – but have decided against. There is no cure at the moment, and I already have my children so that is not part of the equation. I’d rather not know than be looking every day for the first signs of the illness.

Person 2
My grandfather died of HD, but so far my Mum is fine. She does not want to be tested which is her decision, although if I knew she was clear I could relax. I realise that is selfish though. I can’t decide whether to be tested myself – but the crunch is that I really want a family. I could either have myself tested, and if I am in the clear everything is simple, or wait and maybe have the baby tested before it is born and make a decision with my partner then. That would be hard though.

Person 3
I have been tested and I know I carry the HD gene. However I have a very rich and full life, and am only now developing symptoms at the age of 35. Knowing I have HD has made me make the most of every day of my life. I have a young child. This was not a decision I made lightly. I know he may have the disease – but then again there is an equal chance he may not. In any event, if he has as good a life as I have had so far it will be well worth it. I will help him make a choice about testing when he is old enough to understand the implications. Or if I am too ill to do this, my brother who does not have the HD gene will do this. Also with the rate that research is advancing, my son may benefit from a cure or at least better treatments to control or delay the symptoms.

Person 4
I have HD. I had a genetic test when I was 20 as my mother died from HD. I do not have any symptoms yet, and I am 32 now. But every time I forget something, or drop a cup I wonder if this is it, the first sign of the disease developing. I know this is making me very depressed, and that these small things happen to everyone everyday but I cannot help it. I also wonder if getting tested was a good idea – but then living with an uncertainty might have been as hard for me. I do not have children as I would not want them to live with this problem.

 
 Genetic Screening

 

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