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Can you test a baby during pregnancy?

March 4, 2017

Huntington's Disease Youth Organization

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Can you test a baby during pregnancy?

Q. If a women is pregnant and has the potential to have HD disease, can you test the baby while it still being in whom to see if it has HD disease?

Emily, 18, Canada

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A. Hi Emily,

Thanks for your question. Yes, it is possible to have testing in pregnancy. If a person is known to carry the HD gene fault (following a predictive test), a test in pregnancy can be done at around 11-12 weeks to find out whether the baby has inherited the normal or faulty copy of the HD gene. If someone is at 50% risk of HD and doesn’t want to have a predictive test, it is sometimes possible to do what is called an exclusion test. Essentially this test tells you whether the baby is at close to 0% risk or the same 50% risk as the at-risk parent. I’m including a link on HDYO that explains prenatal testing in more detail http://en.hdyo.org/you/articles/45 . There are some very key issues to consider before having a test in pregnancy, for example how a couple would feel about terminating a pregnancy if the result was unfavourable. It could otherwise lead to the very undesirable situation of a child being born with the parents already knowing the genetic status of the baby. This would be unfair to the child as there is international consensus that pre symptomatic testing for HD in childhood is not in the best interests of a child. It also takes away their right to choose as an adult whether or not to be tested.

When it comes to having children there are a number of available options – you could discuss these with a genetic counsellor. If someone is already pregnant they can usually speak with a genetic counsellor quite quickly. I’m including a link to a recent HDBUZZ article you might find useful: HDBuzz - Making babies: having a family, the HD way.

If you would like any help making contact with a genetic counsellor in Alberta, please let me know.

Best wishes,

Rhona, Genetic Counsellor