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Huntington's Disease Youth Organization

Can you have IVF without testing yourself for HD?

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

www.hdyo.org

Q. So my partner has a 50/50 chance of having hd.. his dad and auntie have tested positive for it. however he is against having the test yet wants to start a family in the next couple of years. I dont want to start a family knowing there may be a chance my child might obtain the disease. Is there any way of making sure the child doesn’t have the gene like gentic testing or ivf? if there was we would still end up finding out if he has it

Katie, young adult, UK

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A. Hi Katie,

Thanks for your question. Yes, it is possible to do both genetic testing in pregnancy and Pre-implantation genetic diagnosis (PGD) (using some of the techniques of IVF), without revealing genetic information about your boyfriend. There is quite a lot to know about what is involved and you and your boyfriend may wish to discuss your options more fully with a genetic counsellor. I see that you are living in Manchester Katie. We would be very happy to see you here. The genetics clinic is based at St Mary’s hospital near the city centre.

Testing in pregnancy where the partner is at 50% risk and doesn’t want to be tested, is done by exclusion testing (rather than a direct gene test). I am attaching a link to an article in HDBUZZ that you may find useful https://en.hdbuzz.net/036

An exclusion test uses markers close to the HD gene to see which Chromosome 4 has been passed on to the unborn child i.e. in this situation whether the baby has inherited the paternal grandmother or grandfather’s copy of chromosome 4. Essentially the test would tell you whether the baby is at the same 50% risk as your boyfriend, or at close to 0% risk. The advantage of an exclusion testing (as opposed to a direct gene test) is that it would not reveal any information about your boyfriend’s genetic status, so he would not end up finding out he has it, which was your concern. The disadvantage is that in the event of an unfavourable result it would mean ending a pregnancy at 50% risk. Couples need to think carefully about whether they would plan to terminate a pregnancy at 50% risk before having the test (otherwise it could lead to knowing the child’s genetic status if the parent started to develop symptoms). PGD is also a possible option and is usually funded for up to 3 cycles on the NHS. It is, however, a lengthy process and there is quite a lot to know about the procedure itself.

If you and your boyfriend would like a genetic counselling appointment, you could ask your GP for a referral. If you have any difficulty getting referred, please do let me know.

All the best,

Rhona