Counselling suggested for people who take DNA tests

[Mary from Italy]

People who use genetic tests to trace their ancestry only to discover that they are at risk of succumbing to an incurable illness are being left to suffer serious psychological problems. Dementia researchers say the problem is particularly acute for those found to be at risk of Alzheimer’s disease, which has no cure or effective treatment. Yet these people are stumbling upon their status inadvertently after trying to find their Viking, Asian or ancient Greek roots.

“These tests have the potential to cause great distress,” said Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge. “Companies should make counselling available, before and after people take tests.”

https://www.theguardian.com/science/...cestry-hunters

[Olde Crone]

Yes, I agree with this to a great extent. Many people take these tests frivolously without any thought of the possible downside and how it could affect their insurance prospects, never mind anything else.

I don't know about compulsory counselling, but certainly some kind of "read this first" would be a start.

OC

[HarrysMum]

And, of course, very few will read it first. But it's a start.

I was all hyped up to get it until my grandson was diagnosed with a 'possibly' genetic condition. The geneticist warned against any DNA testing as it would impact his ability to get insurance later. I have the same condition and was told if I get testing, even if only for family history, it would be used to stop my children and grandchildren from getting insurance.
If I thought the results were safe and only for my eyes, I'd do it and shut up, but I know it's open to anyone to see.
There have already been cases in the US for this.

[Terri]

Both my children had extensive DNA tests - both showed an increased risk of Alzheimers. This was also marked as being "genetically unreliable" as it is subject to (as yet) unknown environmental factors, and - apparently as many people with no increased genetic risk get Alzheimers - as those who have the increased risk yet do not get Alzheimers. This does not include the gene for Early Onset Alzheimers, which is a very different gene.

Anyway, they both took it on the chin and are quite unbothered by it and despite the genes, (which means either myself, husband, or both of us has the same gene) no-one in the family has had Alzheimers as far as we know. On the other hand, son has a markedly decreased risk of prostrate cancer! Everything else was normal.

[HarrysMum]

Originally Posted by Terri

Both my children had extensive DNA tests - both showed an increased risk of Alzheimers. This was also marked as being "genetically unreliable" as it is subject to (as yet) unknown environmental factors, and - apparently as many people with no increased genetic risk get Alzheimers - as those who have the increased risk yet do not get Alzheimers. This does not include the gene for Early Onset Alzheimers, which is a very different gene.

Anyway, they both took it on the chin and are quite unbothered by it and despite the genes, (which means either myself, husband, or both of us has the same gene) no-one in the family has had Alzheimers as far as we know. On the other hand, son has a markedly decreased risk of prostrate cancer! Everything else was normal.

I would be quite interested to know myself, but with our laws, it would stop my children and grandchildren from getting insurance or even going into some jobs. If I didn't have children I'd certainly go for it.

[Mary from Italy]

I think I'd rather not know, at least as regards Alzheimer's, because there's no cure for it yet.

[HarrysMum]

Originally Posted by Mary from Italy

I think I'd rather not know, at least as regards Alzheimer's, because there's no cure for it yet.

Me too for that. I wanted it for another condition, but as the treatment I'm having for symptoms is the only one for it anyway, it would just be for my curiosity.

[Terri]

It's all a bit hit-and-miss - it doesn't mean you will get any particular disease just because your genetic risk factors are higher than average, or vice versa!

Genetically, son had a slightly lower than average risk of Crohns ...... and yet he has Crohns!

[Nell]

I think people should be aware of what they are getting into - whether it's DNA testing or taking on a mortgage.

But genetics is very complicated. A predisposition doesn't mean you will get a disease, just as not having the predisposition doesn't mean you will.

Environment plays a part too and just as with our genetic composition, it's something we often don't have much control over. I remember a few years ago there was a hot debate about aluminium pans being connected to Alzheimers.

[James18]

You either have something or you don't; the genetic lottery aspect doesn't really interest me.