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Huntington's Disease Youth Organization

What are our options for starting a family?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. “My partner and I are thinking of starting a family, but I don’t want to have any kids at risk of HD. What are our options? Where should we go for help?” Lucy, 26, England

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A. Hi Lucy,

Thanks for your question. I’m sure there are a lot of young people in your situation who want to know more about their options for having children. There is an excellent section in HDYO called having children which was written with this in mind and outlines the options including testing in pregnancy (usually done around 11 weeks), pre-implantation genetic diagnosis PGD, adoption and donor egg or sperm (depending whether it is yourself or your partner at risk), I suggest you also consider asking your GP for a referral to your nearest genetic centre. A genetic counsellor will be able to have a fuller discussion about all the options tailored to your specific situation. Sometimes by going through all the available choices it becomes clearer which options you as a couple feel drawn to as well as those options you may choose to rule out. The other advantage of talking things through with a genetic counsellor is that they can tailor the discussion to your particular situation. For example, I don’t know whether you or your partner have already had a predictive test that has shown you carry the HD gene expansion or whether one of you is at 50% risk of HD. Where an individual knows that he or she carries the HD gene fault, and does not wish to have a child at risk of HD, they may choose to have a direct test in pregnancy to see whether or not the baby also carries the HD gene expansion. If however the individual does not wish to know for him/herself whether they carry the HD gene fault a direct test would have the potential to reveal unwelcome information if the baby was found to carry the HD gene fault. A discussion with the genetic counsellor may also help to explore your feelings around termination of an affected pregnancy and whether or not you would wish to go down the route of PGD.

I’m really pleased you raised this question Lucy as sometimes people only ask for genetic counselling when they are clear they want to have testing of some sort (predictive or prenatal). Genetic counsellors are very happy to discuss options at any time - even if someone is not at the stage of thinking about starting a family but simply wants to know more about options or what is involved in having a prenatal test. It’s not unusual either for couples to request more than one appointment or to be unsure initially about which choice to make. Alternatively a couple may be very clear about which course of action they wish to follow and simply want more information about the practicalities of a particular option, which is fine too.

There are clearly no right or wrong answers here but what you as a couple feel is the best course of action for yourselves.

Rhona Macleod - Genetic counsellor