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Huntington's Disease Youth Organization

I'm an identical twin and my brother won't get tested

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

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Q. I’m an identical twin, and my brother and I are at risk for HD. Our father had it. I want to be tested, but my brother refuses. What do I do?

Levi, Young Adult, USA

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A. Hi Levi,

Many thanks for your email.

This type of scenario is one that has come up before in the Genetics clinic, so we do have some experience of working with people in a similar position. Although initially there may not be an obvious easy answer, in our experience often people find a way forward that both they and their relative(s) feel comfortable with.

It is difficult to cover everything here that we might want to explore when we are supporting people in this situation, (that would probably best be done in a face-to-face session with a Genetic Counselor, see below), but some of the things to think about would be your motivation for wanting testing, and whether you had a specific timeframe in mind (for example, would delaying the test for the time being feel OK, or unbearable?). An important aspect would be to consider the potential impact on the relationship between you and your brother in each possible scenario.

It’s also important to say that we have occasionally seen twins who have thought they are identical but turn out not to be. If you have not previously had a blood test to confirm that you are identical, this might be a first step to consider (although again there are pros and cons with this).

I think it would be really useful for you / your brother to meet with a Genetic Counselor, as this would give you the opportunity to discuss all these aspects with someone outside the family, and who is experienced in HD & predictive testing. I notice that you live in the USA Levi, so you may find (this website)[http://nsgc.org/p/cm/ld/fid=164] helpful to identify Genetics services that are local to you. Please do get back in touch though if you have any difficulty accessing a Genetic Counselor, or if we can be of further help.

I wish you all the best with this,

Bill