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Interview 23  

Interview 23

Background: Married couple with no children. Female partner aged 37, office manager. Male partner aged 51, engineer. Ethnic background/nationality: Both Italian.

Brief outline:Couple knew before marriage they were beta thalassaemia carriers. His sister and two brothers died of beta thalassaemia major. They have tried pre-implantation genetic diagnosis to conceive a baby unaffected by the condition, so far without success. Video and audio clips read by actors.


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Their GP gave them little help in getting tests done or finding information. They feel PGD is seen as an expensive luxury, rather than a way of preventing a serious illness. (Read by actors.)

 



Video and audio clips read by actors.

Woman:  Maybe I would have liked a bit more sympathy from my GP - try to help me, try to help us, in finding names or help with the tests. Maybe just bits of information - “Oh, maybe you could find out a bit from here, a bit from there, or maybe this will involve so much.” And instead he was a complete barrier.

Man:  There isn't, I wouldn't say awareness, but priority for the fact that having these screens for inherited diseases is prevention, basically, at the end of the day, in the crudest way that you want. Not because you want a perfect world where everybody's got to be perfect, but knowing of such devastating illnesses that you are aware and potentially are very, very high risk, then why not? If you want to make a comparison, if in your family there is a high incidence of, you know, breast cancer, then now it's acceptable, okay. The GP says, “Oh, okay, you can go and have this and that.”

So it's also the acceptance and the way that this is perceived. I think its seen that someone going to the GP to ask for genetic screening for pre-implantation is just like a sort of fancy thing, very expensive. Of course they always have to allocate resources and priorities, so they probably say, “Well, it's money better spent in treating someone with a cancer.” But generally at large, I wouldn't say that it's widely known. Maybe in the future it will be much wider availability and also acceptance on that.

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