£125 for Genetic Te...
 

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[Closed] £125 for Genetic Testing - would you?

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Quite a controversial one this...

[url= https://www.23andme.com/en-gb/?utm_source=google&utm_medium=cpc&utm_campaign=GB_Search-Branded&utm_content=23c_Search_Paid_Brand&gclid=Cj0KEQiAhvujBRDUpomG5cq_mI0BEiQA7TYq-gDcqgJfSXxR2C3PbuYW7KYfyfgvgpD3XgKT59pDq58aApAV8P8HAQ ]23andme[/url]

Banned by the FDA in the US, but in the UK as of yesterday.

Can give you information about, amongst other things, your potential health risks.

[url= http://www.bbc.com/news/science-environment-30285581 ]BBC article[/url]

I'm tempted, purely because I'm interested in stuff like this.


 
Posted : 03/12/2014 9:14 am
 bol
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I'm quite tempted, but it's a bit of a Pandora's box. I was at the Sanger Centre a couple of weeks ago looking at the machines churning this stuff out. The people there weren't very enthusiastic about the idea.


 
Posted : 03/12/2014 9:19 am
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Read this first;

[url= http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme ]http://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme[/url]

I think there's possibly a lot more at risk than just receiving a report about a *possible* genetic predisposition to certain conditions.

It's all a bit snake oily on the health front and positively dangerous for family relationships.


 
Posted : 03/12/2014 9:23 am
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definitely a pandoras box, really depends if your prepared for what you might find out and the follow up support, but then surely its best to know and take the best action to prevent something which your are predisposed to. If i remember there have been unintended consequences in the US where suddenly people have found daddy has another family, or your not actually related to who you think you are...

I think this is the future of healthcare as the current system of ignoring prevention is crushing the NHS.

I have looked at it before and considered it , now the price is reasonable Im going for it.


 
Posted : 03/12/2014 9:27 am
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I think mine would be the equivalent of taking a car in for its MOT when you know fine well it's going to fail 😆


 
Posted : 03/12/2014 9:29 am
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This is a product for people who read their horoscopes marketed as "genetic testing".

I'm out.


 
Posted : 03/12/2014 9:30 am
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In most cases it will, at best, reveal a very slight genetic predisposition to certain conditions, which you probably could have worked out just with a quick glance at your family history.

Sadly, the kind of people who will pay for this kind of thing are the type who are most likely to overreact and become disproportionately anxious about any 'findings'.


 
Posted : 03/12/2014 9:33 am
 DezB
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I guess if you don't know your family history and/or are the sort of mug who would pay for this stuff. I know some people who would absolutely love to find out about all the health risks available to them!


 
Posted : 03/12/2014 9:37 am
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This is a product for people who read their horoscopes marketed as "genetic testing".

Not really though is it. It's the same type of thing that's been available to health care workers for years, but is now being made available direct to the consumer.

I doubt reading your own unique genetic profile would be uninteresting. The predisposition to health conditions is only part of the data that would be available.


 
Posted : 03/12/2014 9:38 am
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Will it tell me if my children will be ginger? Tis the only thing that ways heavy on my mind.


 
Posted : 03/12/2014 9:40 am
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Nope not for me, Shirley it'll be like reading a barcode or something 🙄

Huge potential for misuse, genetic marriages made up by folks that want/feel the need/must have a "clean" genetic propensity to procreate for some sort of super human race.

We're flawed, get over it, save your money and do something more meaningful with it.


 
Posted : 03/12/2014 9:42 am
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They're the guys that used to do all that "you're half Igbo and one eighth Belgian" rubbish, aren't they?


 
Posted : 03/12/2014 9:43 am
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will it answer that great forum question "will i die?"
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or will it just reply, "conti vert pros"


 
Posted : 03/12/2014 9:45 am
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Fair, the horoscope comparison was maybe OTT, but my point was that those buying it for medical information are mugs. It's nowhere near as accurate as the tests available to health care workers and only gives vague indications of any real risk. Hence the FDA ban.

I think the interesting part is really using it as a paternity test, finding lost relatives, and seeing the ethnic makeup of you genome. The last one in particular I think could be an eye-opener for certain people.


 
Posted : 03/12/2014 9:45 am
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I think the interesting part is really using it as a paternity test, finding lost relatives, and seeing the ethnic makeup of you genome. The last one in particular I think could be an eye-opener for certain people.

That's where my interest lies. I'm not arsed about the health risk stuff, but would be interested to see it nonetheless.


 
Posted : 03/12/2014 9:48 am
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That's where my interest lies. I'm not arsed about the health risk stuff, but would be interested to see it nonetheless.

That's quite valid and interesting. Trouble is that most potential 'customers' are looking for something different, and will be presented with data that should come with a significant health warning itself.

What do you get for your £125 - do you really get told through the post that you may be at a slightly increased risk of Alzheimer's?* I can see that kind of information having a debilitating effect on some people.

*No idea if this is one of the genetic mutations they might test for.


 
Posted : 03/12/2014 9:54 am
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or will it just reply, "conti vert pros"

So it's a duff product. The correct answer now a days is High Roller II front Ardent rear.


 
Posted : 03/12/2014 10:00 am
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seeing the ethnic makeup of you genome. The last one in particular I think could be an eye-opener for certain people.

This, I'd love to know about my genetic ancestors and where they came from, I think it'd be really interesting. It'd also be interesting to see if me and the mrs are actually very distantly related...ahem...our mums maiden names were the same. You'd want to test and plot as many generations as possible and create a big (or small!) map.


 
Posted : 03/12/2014 10:03 am
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Trouble is that most potential 'customers' are looking for something different, and will be presented with data that should come with a significant health warning itself.

I think you're absolutely spot on. There will be a huge number of people who won't be able to deal with the "results", but actively seek them out anyway.

One of my best mates was adopted and has never been able to trace his birth family, so he's quite keen to do it, not from the perspective of finding his birth family but to understand more about the kind of stuff we all find out from looking at our family (ie history of cancer etc). It's not that accurate, but I can only imagine how it must be for him to be completely in the dark about his family history.


 
Posted : 03/12/2014 10:04 am
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Already have my genome sequence courtesy of colleagues who work in this area, cost me pub lunch and a pint 😀


 
Posted : 03/12/2014 10:04 am
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having a quick read up it seems there is nothing wrong with the accuracy of the lab testing just the interpretation isn't as comprehensive as it should be. Ie its only testing a few markers for a disease risk when research suggests there may be hundreds, or basing it on studies with different ethnicity.

I wonder what effect the tests would have on Norfolk...


 
Posted : 03/12/2014 10:16 am
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Wouldn't bother having the NHS well man mallarkey, so no.


 
Posted : 03/12/2014 10:23 am
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I'd be interested to see future implications for health insurance.

If you take one of these "tests" and it indicates a potential predisposition to a particular disease...insurers would love to be able to limit future claims for that disease.

I foresee an additional question on insurance declarations: Have you ever been given any information which indicates more than a 20% chance of being genetically predisposed to any illness or disease?


 
Posted : 03/12/2014 10:36 am
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My current favorite tidbit of information in this regard is that most of us carry a goodly number of genetic variants that had been thought to definitely cause genetic diseases in those that carry them. Now that more and more information is being gathered from 'normal' people we find that the causal links are not as simple as has always been thought.

This is an area of knowledge in the midst of a true scientific revolution - and you can bet that our understanding will get rapidly better. But for now, the genetic horoscope comment sounds about right.


 
Posted : 03/12/2014 10:41 am
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My understanding was that insurers currently aren't supposed to ask for genetic test results (a voluntary agreement between insurers and the govt).


 
Posted : 03/12/2014 10:43 am
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Northwind - Member
I think mine would be the equivalent of taking a car in for its MOT when you know fine well it's going to fail
I prefer to think of myself as one of those bangers that you know everything is wrong with, but just seems to keep on going!

I'd rather not know the specifics till I have to! 😀


 
Posted : 03/12/2014 10:45 am
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I've been genetically tested by the NHS, it was for a late-onset condition so had to wait til middle-age to be tested. Am very tempted for this one, in fact I was even considering it years ago.

It's a personal decision.


 
Posted : 03/12/2014 10:54 am
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Certainly is a personal decision, but what useful information do you reckon you could get from it, health-wise?

And if it told you you were at very slightly increased risk of a degenerative disease of some kind (that could not be mitigated by lifestyle improvements or medication), how would that affect you?


 
Posted : 03/12/2014 10:58 am
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as a medical/healthcare tool its of limited value, this one in particular

as an interesting look into your genetics its fun!

but there needs to be a national framework for administering and handling the results of this kind of test.

personally I think we should all be sequenced at birth (and insurance companies be legally barred from accessing the info)

If anyone is interested in a specific heart disease genetic test thats far more robust and better managed than this one I can point you in the right direction.


 
Posted : 03/12/2014 11:02 am
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And if it told you you were at very slightly increased risk of a degenerative disease of some kind (that could not be mitigated by lifestyle improvements or medication), how would that affect you?

SELL THE HOUSE......GERONIMO!!!!


 
Posted : 03/12/2014 11:04 am
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Good questions but I have two children, both adults. In addition I have a lack of confidence in the NHS so, as far as I'm concerned, knowledge is power.


 
Posted : 03/12/2014 11:04 am
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[i]as far as I'm concerned, knowledge is power.[/i]

Even if the American Authorities have deemed that the 'knowledge' this test would give you is likely to be inaccurate? And that there's no counseling offered if they do identify a 'problem'?

I'm not against genetic testing per-se but this seems like a solution that raises more problems than it can possibly solve.


 
Posted : 03/12/2014 11:09 am
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There are too many downsides and few upsides.

If you've got a genetic condition that's going to effect your later life, sure, go ahead and get that tested, but I doubt a £100 generic test is going to reveal much to you without the surrounding counselling and medical advice with which to deal with and do anything about it.

I read somewhere that go back just 8 or 9 generations and the amount of pairs of people involved in you family tree is already in the thousands, and that's just the direct forebears. There's potentially an issue that will get you regardless, and TBH, that's just chance. welcome to humanity


 
Posted : 03/12/2014 11:11 am
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cinnamon_girl - Member

as far as I'm concerned, knowledge is power.

...and power corrupts 😉


 
Posted : 03/12/2014 11:11 am
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A little knowledge is a dangerous thing. I don't think any of us know how we would cope with this kind of information until it hits the doormat. Could be a feeling of powerlessness, rather than power.

My dad has early onset Alzheimer's. Part of me thinks it would be useful to see if there was a genetic component, but on reflection I think it would blight the next 20 years of my life.


 
Posted : 03/12/2014 11:13 am
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so if in x amount of years you are diagnosed with Alzheimers how would you feel then knowing that a cheap test years ago may have enabled you to research the disease and enabled you to make an informed choice on how best proactively change factors in your control now?


 
Posted : 03/12/2014 11:43 am
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cyclomonkey - you're assuming that this particular test is able to accurately provide the information required to make an informed decision.

No one (I think) has said that genetic testing if performed accurately and with adequate counselling and medical support can be of benefit - the question is whether this one is the right test to use (particularly with the added complications of 'find out if your parents were having an affair' built in).


 
Posted : 03/12/2014 11:47 am
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so if in x amount of years you are diagnosed with Alzheimers how would you feel then knowing that a cheap test years ago may have enabled you to research the disease and enabled you to make an informed choice on how best proactively change factors in your control now?

What if it says you are not likely to but gets it wrong and you based your choices on it?
If the cheap test says its likely, are you going to drop £1000 on a better test?
What if you could spend £1000 on a better test now, why have you not done that already?


 
Posted : 03/12/2014 12:04 pm
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Answering the OP's question, I'm not bothered about finding out....


 
Posted : 03/12/2014 12:04 pm
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just re-read my last post - fixed it as outside the edit window

[i]No one (I think) has said that genetic testing if performed accurately and with adequate counselling and medical support [s]can[/s] [b]can't [/b]be of benefit [/i]


 
Posted : 03/12/2014 12:05 pm
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Um, I have two permanent health conditions one of which is inherited so completely accept that I have a different viewpoint to many. There is no right or wrong.


 
Posted : 03/12/2014 12:18 pm
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A couple of points. The 23andme no longer banned in the US, since they have toned down many of the claims. Although the FDA letter to 23andMe was pretty full on.

Also it's not really a full diagnostic test, it's more of a lifestyle screen that has some element of prediction risk since there is a fair amount of subjectivity to interpreting the results. It was widely reported a few years ago, when journalists send their DNA to a few different labs, they got quite widely different interpretation of their results.

The serious stuff (cancer predisposition, late on-set disorders) have all been removed from the current test.

I work in genetic diagnostics and would I use it - no. Either go for a proper test or save you £125 (btw it's $99 in the US)


 
Posted : 03/12/2014 12:53 pm
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Whats the stats for false positives and false negatives? Complete waste of time. If it was worth it, at £100 a time, the NHS would already be doing it.


 
Posted : 03/12/2014 1:20 pm
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The technology is actually very robust. +99.9% accuracy with 23andMe outsource the testing. It's the interpretation that can be subjective.


 
Posted : 03/12/2014 1:41 pm
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Without waffling on too much, the main issue is that genome sequencing tells you which sequences are present, not which genes are being expressed.

Given that even the relationship between any single gene being expressed and a disease state is rarley known, the presence of a potentially expressed sequence is an even less direct indicator.

Ideally you need to sequence expressed genes from the target tissue of the disease - then you would have quite a good chance of getting some realistic data.


 
Posted : 03/12/2014 1:52 pm
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twinw4ll - Member

Wouldn't bother having the NHS well man mallarkey, so no.

Why not? I know of four peole who've had prostate cancer picked up this way, unfortunately one was too late and another isn't looking good as it's spread despite treatment, but still better than if he'd delayed and they'd not found it untill it'd spread.

Personaly I'd be all for it, but then I did recently mistake a photo of my grandad on his wedding day for my younger brother and grear-great-grandad for my grandad so no issues there, we clearly have very distinctive genes.


 
Posted : 03/12/2014 2:32 pm
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Interesting thread. I found out in the past year that I have a 50% chance of developing Huntingtons Disease. Currently going through genetic councilling to decide whether to get tested or not.
I feel this has come into family life, but not knowing the answer is like chasing shadows. If I choose to, looking at a test early next year.


 
Posted : 03/12/2014 9:34 pm
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There is one certainty for all of us ... death. 🙄


 
Posted : 03/12/2014 9:51 pm
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Went to see a doctor over something I thought might be quite minor. He did a standard test and ended up dismissing the original thing in favour of something potentially very serious. I don't gave a diagnosis of that but a genetic test could reveal that I do have it (or will develop it) and intend to keep it that way for as long as possible so I can continue to access life insurance, travel insurance or a (re)mortgage.

Though the risk has heavily influenced my attitude to having any more children.


 
Posted : 04/12/2014 2:45 am
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My wife ordered two tests today so I'll see how it goes. I'll post any interesting information as I move though the process.


 
Posted : 04/12/2014 8:30 pm
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125 quid?. Could've bought one of those reverbs from canyon, and enough left for a few beers!.


 
Posted : 04/12/2014 8:37 pm
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who gets to see the results? they should do it cheaper for those willing to share their results for a database - surely that would be of some research use?


 
Posted : 04/12/2014 8:48 pm