HD Australia

If you have a test, do you have to have Genetic Councelling?

My son had a DNA test and the doctor will not give him the results unless he has genetic councelling.

Thanks
Fiona

Hi Fiona - I'm not sure where you live, but if you're talking about a predictive DNA blood test for Huntington's Disease (HD), then I'm surprised they did the test before your son had genetic counselling. How old is your son?

There is a worldwide protocol that has been in place for several years, that the person interested in the predictive testing for HD must undergo counselling with a genetic counsellor, then meet with a geneticist, and usually meet with a psychologist as well, before the geneticist can request testing for HD. I'm only speaking from experience with the NSW health system in Australia. Is your son's doctor a geneticist or neurologist, as they are the only medical specialists who can request testing for HD, as far as I know.

The results of HD testing can be life-changing - so I think they do the counselling beforehand to ensure that the person who is testing understands all the ramifications, for themselves and their family members, that come with receiving the results, whether they are positive or negative, but especially if they are positive.

I don't know if the above answers your question - but it is my understanding of the testing process in Australia for HD. Perhaps other members of the forum will be able to explain further.

sonnie

Hi Fiona,

As Sonnie has explained, you usually you have to have Counselling prior to any blood tests being done.

Your situation sounds a bit strange, in the sense that the blood test was done first. Im a bit confused as to why the docter would go ahead and do the blood test if he wasnt going to give the results??? and then leave you all hanging...how old is your son?

Is there a history of HD in your family?

If your in Australia i would ring Fiona Richards at Westmead or John Conaghan at Newcastle. They have been genetic counsellors for HD for over 20 years...they may be able to advise you further.

Your situation may be unique which has lead to it happening this way...im not sure.

Here are the contacts

Fiona Richards
Social Worker
0298453273

John Conaghan
Social Worker
0249853100

Michelle

Hi Sonnie & Michelle

Thanks for such a quick response.  I was confused also about the testing.  I couldn't understand someone taking a test and not giving you the results.  His sister said he had had the test but it turn's out that he went for the test but has to have genetic councelling first.  She had the facts back to front.

My son is 34.  My brother has HD and a couple of his daughters also have HD.   One of the girls was diagnosed in her 20's.  The family are all in NSW.

I am going to pass on Fiona Richards number to him.  I had heard about her before when I lived in NSW.

Have a great day.

Fiona

Not as strange as it seems, the same thing happened to me. In my case it was a case of the GP have absolutely no idea what was going on/what to do. I've subsequently had to give them a lesson on HD since getting my positive test result. Guess some of them have no idea? I had previously discussed the testing process with my Aunt who also underwent it and mentioned counselling to the GP to no avail.

When I asked my GP about predictive testing, they printed me off a pathology form and sent me to get the blood taken. The GP said they hadn't ordered that particular test before, but looked it up on their online database, and followed the instructions.

Anyway, I asked about getting the results, and the GP said if it was negative they'd ring me, but if it was positive I'd be put in contact with a genetic counsellor.

As it turned out I was contacted by a genetic counsellor and went through all the counselling sessions before getting my result...

So it isn't all that unusual to be sent off for the blood test without being told about the whole process.

Sal

Hi Sal



I'm afraid I think that is just not right either.  To me that says if you are contacted by the genetic counsellor than you have the HD gene.  I can't imagine what you must have felt when you got that call from the counsellor and not the doctor.

This is just my thoughts but if it was me getting that call I would be presuming I had the gene (going by what the GP says) and I would want the test confirmed first.

N.B.  My son has had his first counselling session.  There will be another at the end of the month. Also with a Neurologist and results of test in about six weeks.


Fiona

Fiona,

I think all the confusion was because the dr really hadn't come across HD before and was just going off the information they had available.

Actually, the first thing the counsellor mentioned when they called was that my blood had been received for the test, but the results weren't yet known (either that or the sample hadn't yet gone for testing; it's a few years ago now), and in order to find out there was the process of several sessions and a neurological examination etc. I can't remember if I was concerned about getting the call - I don't think I had time to even think "I must be gene positive" before things were explained

I was given the opportunity to halt the testing at any time, and they asked again specifically before the blood was actually tested. The process was very thorough and I for one found it a good experience, overall.

Fiona, I'll be thinking of your son (and you and your extended family too) as he does the testing. Best wishes for the best outcome for him...

Sal