Genetic testing

[LovelyBath77]

For £150 you can send your spit off to USA and have it analysed. I got mine done as have family history of dementia and sure enough have a copy of the APOE4 gene.

They don't advise people to do it for children until they turn 18 and I think I do agree with this. I would like to know if they had it too. My worst thing would be if one of them had two copies of the gene.

What do you think about it? I do know of people who have done it for younger children.

I suppose a different way would be for DH to get tested to see if he had a copy of the gene as well.

There are ethical issues around it.

Firstly information without knowledgeable counselling can cause worry in a patient - your ApoE variant increases risk but it doesn’t say you absolutely will get dementia.

Secondly there are issues with insurance etc - sometimes you have to declare if you’ve been tested for stuff and that can affect quite heavilyvthe cover you will get.

So I don’t know - I am a geneticist myself and I’d be interested to have the info but I’d need to analyse it very carefully.

What are you hoping to achieve.

Would you not be better off just telling your kids you have a family history of altzhimers and so lead a healthy life as much as possible.

You can't change the genes so does knowing make a difference? For me it would just cause undue stress, upset and worry about somthing you can't change.

Have you seen Gatica?

Well, there is quite a bit of genetic research and trials going on into the APOE4 gene, I'm only 41 so with only one copy I would have lots of time to go to get involved in that, and also find things which might help for those of us with that gene in particular. especially as the risk is higher in women. So yes it is a bit stressful but I'm kind of glad I know.

I suppose a different way would be for DH to get tested to see if he had a copy of the gene as well.

The info you’d get from this isn’t definite either. You say you have one copy of the e4 variant? What’s the other allele?
You’d get Dhs genotype too - but again this only gives you possibilities of what you’ve passed to your kids.

Had a google of the film, no not looking at closing children due to genes, but looking at the genes they have in order to help with future health issues. there is a difference. you can run the report through other software and it can tell you lots, for example about vitamin deficiencies, reaction to drugs etc.

choosing I mean sorry

So one copy increases your risk by 2-3x. That’s not inconsequential but it’s not saying you definitely will get Alzheimer’s either.

If you take this as a prompt to have as healthy as lifestyle as you can then it could be a positive thing - if it is making you worried then maybe it isn’t.

Bowl Yes, I know, but it would help as if he did have APOE3/3 as 3/4 of us approx do, I would know then my children could only possibly have one 4 from me, and would have no possibility of two 4s. As boys, having one 4 is not too bad as higher risk only in females for one. I'm 3/4.

Questions I would want to know before you even discuss the results:
What lab?
Are they accredited in some way?
Quality assurance?
Counselling before testing?

150 quid seems suspiciously cheap given exome sequencing is generally much more expensive than that.

Having two copies - 4/4 raises your risk by 12-15 times

It is 23andme. Then you can run it through other reports such as Promethease which can tell you a lot more.

I would have their dad do a test.

DH, DD and I have all had our whole genomes sequenced as part of the 100k genome project, we were recruited because my daughter has unexplained profound deafness. They also give you the option to look for genes involved in other diseases, e.g. genes related to cancer, heart disease, early onset dementia. So probably similar to these commercial sequencing packages. We thought long and hard about it, and decided to opt in to the additional testing. DH and I could make the decision for ourselves, but DD is only 2. It's so hard to know if it's the right thing or not, whether she'd want to know. I wouldn't have done it were it not under the supervision of a geneticist, personally. So, rather hypocritically, in your case I would wait until your kids are older and ask them if they'd like to do the test.

Your DNA is now held by a private American company. A dodgy private American company who most likely will sell your results to advertisers. They don't make a profit from the tests, that's for sure.

www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/

Personally at this stage I wouldn't bother.

And I'm saying this as a carrier of a genetic condition that I could pass on my to my children if I had them with another genetic carrier, someone who has a blood disorder and someone who is at risk of another condition.

Unless a condition is 100% genetic - lots aren't - then testing would give you false reassurance if it came back negative.

I havn't done this and don't think I would as I'm in the "rather not know" category (and cheap!) but as you have the APOE4 gene have you heard of Dr Rhonda Patrick? She is an American Dr (I think of science more than medicine) who is one of these incredibly, beyond my comprehension, smart people and is a specialist in aging, the brain, cancer, nutrition and probably more. Her father has dementia and she also has the gene and she does lots of things to improve her outlook, she outlines what she does in terms of supplements, food, sleep, cutting down on alcohol etc to help create and keep those neural pathways.

She has a website, is on twitter/facebbok and has a youtube channel if you are interested and she had a baby last year too so I imagine she will be sharing things she does as a mum that you could do for your kids too.

Also, if you used 23 and me she has a ting on her website to run your data from there to get lots of info too.

There’s been a lot of criticism of 23 and me...

There's a very strong history of breast cancer in my DH's family and I also have it. My DD is 18 and would qualify for genetic testing on that basis but has decided she doesn't want to know at the moment. I would definitely let them decide for themselves when they are old enough to understand the implications.

Thanks Jan, just ran the data through her site and it came up with some really useful stuff about risk for celiac's and vitamin D etc which have come up with me in the past. Really helpful.

What do you actually get done for £150?
Sequencing has become incredibly cheap, I do get whole microbial genomes sequenced for work frequently and I have seen the costs drop enormously. Thye may use other analysis than sequencing but they aren't necessarily cheaper. I still would have serious doubts about the sort of analysis you can get done for that kind of money.

On 23andme it gives you basics then you can run the data through other reports such as one called Promethease which links the snps to studies on the variants etc.

Not sure if can link to them but you can google. for more info.

The fact you're asking these questions on AIBU highlights the monumental flaw in this sort of testing. You need proper genetic counselling. Ideally this should be before sending tests away, but given that horse has bolted you should see a GP to discuss this and be referred to a genetic counselling service. I would urge anyone else not to undertake such testing without counselling beforehand about the validity of the tests, penetrance, impact on mental wellbeing when a result is found and on insurance, children etc. And these companies are in it for the data collection. I wouldn't be surprised if the OP receives ads for aged-care facilities in the near future.

I have already discussed my results with the GP and they were fine, have discussed lifestyle changes and did some blood tests which were reassuring. (the genotype often means cholesterol problems) Gp and I are going to keep an eye on it, so it has been helpful. to be honest.

Notbad I find your reply quite patronising, as an adult it is up to us if we choose to find out such information and have counselling etc. Please stop speaking to me like I am a child. I specifically chose to have the test due to this gene and family history.

You've had a dodgy genetic test done and come onto AIBU asking about what the implications are for your family. You admit you've been stressed out by this uncertainty. Both of these things indicate to me you haven't been counselled properly, your GP has done a poor job (before and after) and I want to warn other people from going down the same path as these companies take advantage of people's fears as a way of collecting data. I'm sorry you find it patronising. Yes you're and adult perfectly entitled to chose to get counselling if you wish. I would advise everyone else to not get this from AIBU after the results come in.