Would You Have Your DNA Tested?

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Ricardodaforce

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No
I recently found out about a company called 23 and me. They test your DNA. The results show a variety of health indicators including your propensity to contract certain serious conditions. It also reports on your ancestral origins.

Seems quite interesting to me. Would you do it? Do you know anyone that's done it?
 
If I had a family history of a condition or conditions that have been linked to a specific gene ie breast cancer, then probably yes. But I would want very good assurances that the people doing the testing really did know what they were doing and more importantly had the correct knowledge to interpret the results.

BUT in the absence of that no I wouldn't.

Just found this on the bottom of one of their pages

"The genotyping services of 23andMe are performed in LabCorp's CLIA-certified laboratory. The tests have not been cleared or approved by the FDA but have been analytically validated according to CLIA standards. The information on this page is intended for research and educational purposes only, and is not for diagnostic use"

Now I know that this is not a treatment as such so probably does not need FDA approval BUT why mention they have NOT been approved by the FDA???

Spend your $99 by all means but don't rely on this to save your life.

David
 
The biggest problem with this is that just because you may have a certain gene, mutation etc, doesn't necessarily mean that your going to get the condition with which the gene/mutation is associated, you may just be at a higher risk but it still doesn't mean that your going to develop it for certain.

You've then got the problem that for a lot of rarer conditions the genetic changes are not characterised and therefore a test like this is not going to be able to warn you of them. For instance, I have a genetic immunodeficiency condition called Common Variable Immunodeficiency, which has an estimated 50 subtypes that give identical clinical results (for different reasons), but except in 6 rare forms the genetic mutations are unknown.
 
Berliner said:
Maybe I can actively do something to stop it breaking out?
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or spend the rest of your life worrying about somehting that might never happen and/or was unlikely to ever happen..
 
Nope, already know I've got serious health issues i have no interest in learning about things I might or might not get in the future...

Lets face it how accurate can it be they cannot even certainly verify the sex of an unborn child, why should I trust something like this....it's just a brilliant was to get cash out of the gullible, the paranoid and hypochondriacs

You could get hit by a bus tomorrow, it won't predict that either :LOL:
 
not unless a dishy 18 year old with big knockers got me on the jeremy kyle show and accused me of fathering her six unwashed sprogs ,apart from that no reason whatsoever .there not having my dna to make dinosaurs with i saw the film to :LOL::LOL::LOL::LOL:
 
MWHCVT said:
Nope, already know I've got serious health issues i have no interest in learning about things I might or might not get in the future...

Lets face it how accurate can it be they cannot even certainly verify the sex of an unborn child, why should I trust something like this....it's just a brilliant was to get cash out of the gullible, the paranoid and hypochondriacs

You could get hit by a bus tomorrow, it won't predict that either :LOL:
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Do you believe women that get preventative mastectomies are gullible, paranoid hypochondriacs?
According to Angelina Jolie "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman." Information obtained from having her DNA mapped.

The UK Government think this kind of service is of such value that they are spending 100 million pounds on having the DNA of over 100,000 mapped; The aim is to give doctors a better understanding of patients' genetic make-up, condition and treatment needs, and help develop new cancer treatments.

It's all too easy to trash these news services. But there is science behind it. Yes, it's a commercial business. But then so is healthcare.
 
KIPAX said:
or spend the rest of your life worrying about somehting that might never happen and/or was unlikely to ever happen..
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This. It's the same as being told when you're gonna die or what of. If someone said that you would die in a car accident, would you lock yourself up at home? Or move somewhere where there were no cars?

The other concern I would have is ownership of the DNA sample. Technically you would not own it and they would be free to do whatever they want with it.
 
Ricardodaforce said:
Do you believe women that get preventative mastectomies are gullible, paranoid hypochondriacs?
According to Angelina Jolie "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman." Information obtained from having her DNA mapped.

The UK Government think this kind of service is of such value that they are spending 100 million pounds on having the DNA of over 100,000 mapped; The aim is to give doctors a better understanding of patients' genetic make-up, condition and treatment needs, and help develop new cancer treatments.

It's all too easy to trash these news services. But there is science behind it. Yes, it's a commercial business. But then so is healthcare.
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My opinion comes from discussion with my sister who FYI has had breast cancer, has two medical based masters with honours so I suspect she might have slightly more knowledge of the human body than you or the journalist...
 
MWHCVT said:
My opinion comes from discussion with my sister who FYI has had breast cancer, has two medical based masters with honours so I suspect she might have slightly more knowledge of the human body than you or the journalist...
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My question was reasonable Matthew. No need to react so negatively. I don't profess to have any medical knowledge either, nor did I do so.
 
Ricardodaforce said:
Do you believe women that get preventative mastectomies are gullible, paranoid hypochondriacs? According to Angelina Jolie "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman." Information obtained from having her DNA mapped. The UK Government think this kind of service is of such value that they are spending 100 million pounds on having the DNA of over 100,000 mapped; The aim is to give doctors a better understanding of patients' genetic make-up, condition and treatment needs, and help develop new cancer treatments. It's all too easy to trash these news services. But there is science behind it. Yes, it's a commercial business. But then so is healthcare.
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I think there's a considerable difference between having something done out of interest, with potentially serious results, and no support. And havEing the same tests with appropriate support & consideration to all the consequences, and guidance as to how to proceed.

My dad has a serious and uncureable genetic disease. I'm considering testing, knowing that if that test is positive I can adjust my lifestyle to delay onset as long as possible, but I can make those changes anyway. The only way I'll go ahead is with appropriate medical support
 
Ricardodaforce said:
My question was reasonable Matthew. No need to react so negatively. I don't profess to have any medical knowledge either, nor did I do so.
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It's was not a negative response...it was only a response to your sensationalist response to my opinion...a negative response would have been a simple two word response
 
I think part of the point of these new services is that it makes this kind of DNA profiling accessible to all. In the past it was extremely expensive. Now anyone with (not much) money can do it. You're 100% right about the lack of support though. I am sure that not everyone would react well to news that they are likely to develop something like Alzheimer's for example.
 
MWHCVT said:
It's was not a negative response...it was only a response to your sensationalist response to my opinion...a negative response would have been a simple two word response
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Sensationalist? The example of Jolie is valid.
 
keep it calm chaps, take a step back if you're getting hot under the collar.

I think its interesting, its been proven to be accurate by a lot of research and effort,and it wouldnt have a lot of money being put into it if there wasnt a sound basis to it. Gene mapping is the future IMHO, though how it is used needs to be thought about carefully.
 
If your family history points towards there being a genetic risk of you developing one of many genetically carried conditions, then the tests to identify the presence of the marker for the conditions are now largely available on the NHS.

If those previous family histories of said conditions aren't present, why would you spend your life worrying about maybes? You might as well worry about being struck by lightning, or killed in a terrorist attack.
 
Speaking of those postage style tests, has anyone tried those allergy ones? My friend did one and was apparently allegic to over 300 natural substances (you're provided with a tick sheet which shows how strong the allergy is etc) and apparently all this can be done with a few strands of hair?
If it's accurate then the NHS etc would be raving on about it!
 
viv1969 said:
If your family history points towards there being a genetic risk of you developing one of many genetically carried conditions, then the tests to identify the presence of the marker for the conditions are now largely available on the NHS. If those previous family histories of said conditions aren't present, why would you spend your life worrying about maybes? You might as well worry about being struck by lightning, or killed in a terrorist attack.
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That particular company is an American one that offers an international service. If I wanted to have this kind of service, the NHS certainly wouldn't offer it to me because I'm non resident. The way healthcare is being cut to the bone where I live (due to the crisis), I'm fairly sure it wouldn't be available to me here either. (They've even stopped doing preventative mammograms in some areas.) That may well apply too to people in other countries.
 
In answer to the original question, no. Not even for free. As has been pointed out, a marker for a condition is no guarantee that the condition will develop so should one show up, you could spend the rest of your life worrying about something that never happens (and you could also have no conditions show up and be knocked over by a bus on your way home from the test!!!) Would any health insurance you have cover any remedial surgery or preventative medication if it was needed?
 
If you're worried, talk to your GP. If this came back with some negative indicators, what would you do about it? Other than worry yourself and your family.

Have a good look at some reviews before spending the money. Here's one: Google
 
Flightphoto said:
Speaking of those postage style tests, has anyone tried those allergy ones? My friend did one and was apparently allegic to over 300 natural substances (you're provided with a tick sheet which shows how strong the allergy is etc) and apparently all this can be done with a few strands of hair?
If it's accurate then the NHS etc would be raving on about it!
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Was your friend then offered some 'natural' cures by any chance? 'Cures' that cost rather a lot but were noticeably light on properly published research but heavy on testimonials!!! with!!! lots!!! of!!! exclamation points, on a site with fonts that made your eyes bleed?
 
Another thought springs to mind. If you did have such a test and the results suggested you might have a high chance of a certain disease you might put yourself in an awkward position for health insurance.

Back to the actual question....I've thought about it a few times for family history purposes but without all of those distant relatives I want to prove or disprove a connection to ALSO having the test done I can't see the point.
 
I will go against the flow here, I am thinking this may be a good idea for me even if others would rather not. As I was adopted at two weeks old I have no family medical history to look back at for points in my life. I realise this means nothing to look at and worry about, but nothing helpful either.

The other point is people are saying they would worry about the possible outcome if you are prone to some illness or other. As I already know I'm going to die as the one inevitable side effect of life any info to maybe extend that or ease the passage is something of a positive IMO.
 
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Indeed, life is a bad thing...

It's a 4 letter word for a start. It's also a sexually transmitted condition. As Andy's pointed out, so far (in man at least!) it's also a terminal illness...
 
I can speak from personal experience on this subject... bit of background:

Paternal grandmother diagnosed with breast cancer aged 37 (unusually young if you were not aware). Lived into her 70's then died of throat cancer.

Father died of liver cancer in November 2011.

Sister diagnosed with breast cancer in June 2012 - aged 37. Has since spread and is now incurable. She has also since had salivary gland cancer.

Closely followed by me being diagnosed with breast cancer in August 2012 - aged 32.

So...

I requested to be referred to a geneticist and was tested for BRCA1 and BRCA2 gene mutations. Turns out I have a BRCA2 gene mutation - this gives 80% risk of breast cancer and 20% risk of ovarian cancer. Significantly higher than the general population. The geneticist did however make clear that a negative result for these genes would not have actually meant my cancer wasn't genetic - just that it wasn't one of the genes they know about. With my family history, there would clearly still have been something going on.

I had already had two minor operations without success and agreed bilateral mastectomy as the next step before finding out my results. One side had to be done due to the cancer, the other side was a risk reducing move on my part. I had the first stage of that surgery in May, next op is December.

Again, with my family history I was completely supported in the risk reducing element of my surgery by my plastic surgeon and a psychologist, without any of us knowing I had a gene mutation at that point. I will also have my ovaries removed at about 40 - after we have had a chance to try for children once I can take a break from the drugs I am having to take. In the meantime I will have ovarian screening to try to pick any issues up early.

As someone who has had to deal with cancer, chemotherapy, major surgery and all the additional rubbish that comes with it (possible infertility / emergency IVF before chemo / side effects from the maintenance drugs / psychological effects etc etc) - I can confidently state that I would rather have known and been able to take the preventative options instead. Pretty sure my sister would say the same - even if she'd chosen early screening rather than preventative surgery she would hopefully now be in the 'curable' category instead of incurable.

I also know ladies with a horrible family history of breast / ovarian cancer, who were diagnosed young themselves yet tested negative for the BRCA genes. They have a much more difficult decision to make and to be honest, I'd rather know what I'm dealing with than be in their position.

I'm glad that my nieces and nephews (and hoped for own future children) with have the knowledge and power to potentially avoid what I'm dealing with. Who knows what their options will be with the rate that medicine advances - the options could be much better and less invasive than 'have your boobs chopped off and ovaries ripped out'. I don't think that is gullible or paranoid.

HOWEVER, there is a further gene mutation I could have been tested for and chose not to be - TP53. This essentially predisposes you to all manner of cancers and gives you precious little in terms of preventative options. I decided if it didn't add any value in terms of prevention, I'd rather not know.
 
Flightphoto said:
Speaking of those postage style tests, has anyone tried those allergy ones? My friend did one and was apparently allegic to over 300 natural substances (you're provided with a tick sheet which shows how strong the allergy is etc) and apparently all this can be done with a few strands of hair? If it's accurate then the NHS etc would be raving on about it!
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Someone asking Dr Christian of Embarrassing Bodies that question on Twitter the other day. His response was that it was something that rhymes with pollocks.
 
Daysleeper40 said:
I can speak from personal experience on this subject... bit of background: Paternal grandmother diagnosed with breast cancer aged 37 (unusually young if you were not aware). Lived into her 70's then died of throat cancer. Father died of liver cancer in November 2011. Sister diagnosed with breast cancer in June 2012 - aged 37. Has since spread and is now incurable. She has also since had salivary gland cancer. Closely followed by me being diagnosed with breast cancer in August 2012 - aged 32. So... I requested to be referred to a geneticist and was tested for BRCA1 and BRCA2 gene mutations. Turns out I have a BRCA2 gene mutation - this gives 80% risk of breast cancer and 20% risk of ovarian cancer. Significantly higher than the general population. The geneticist did however make clear that a negative result for these genes would not have actually meant my cancer wasn't genetic - just that it wasn't one of the genes they know about. With my family history, there would clearly still have been something going on. I had already had two minor operations without success and agreed bilateral mastectomy as the next step before finding out my results. One side had to be done due to the cancer, the other side was a risk reducing move on my part. I had the first stage of that surgery in May, next op is December. Again, with my family history I was completely supported in the risk reducing element of my surgery by my plastic surgeon and a psychologist, without any of us knowing I had a gene mutation at that point. I will also have my ovaries removed at about 40 - after we have had a chance to try for children once I can take a break from the drugs I am having to take. In the meantime I will have ovarian screening to try to pick any issues up early. As someone who has had to deal with cancer, chemotherapy, major surgery and all the additional rubbish that comes with it (possible infertility / emergency IVF before chemo / side effects from the maintenance drugs / psychological effects etc etc) - I can confidently state that I would rather have known and been able to take the preventative options instead. Pretty sure my sister would say the same - even if she'd chosen early screening rather than preventative surgery she would hopefully now be in the 'curable' category instead of incurable. I also know ladies with a horrible family history of breast / ovarian cancer, who were diagnosed young themselves yet tested negative for the BRCA genes. They have a much more difficult decision to make and to be honest, I'd rather know what I'm dealing with than be in their position. I'm glad that my nieces and nephews (and hoped for own future children) with have the knowledge and power to potentially avoid what I'm dealing with. Who knows what their options will be with the rate that medicine advances - the options could be much better and less invasive than 'have your boobs chopped off and ovaries ripped out'. I don't think that is gullible or paranoid. HOWEVER, there is a further gene mutation I could have been tested for and chose not to be - TP53. This essentially predisposes you to all manner of cancers and gives you precious little in terms of preventative options. I decided if it didn't add any value in terms of prevention, I'd rather not know.
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Thank you for such an interesting and insightful post. I think you've highlighted the potential benefits of this kind of service better than anyone else could have done.
When you asked for the referral to the geneticist were you able to do this on the NHS or did you have to buy the service privately?
Good luck for what's to come in December. I think you display an awesome attitude to it all.
 
Ricardodaforce said:
Thank you for such an interesting and insightful post. I think you've highlighted the potential benefits of this kind of service better than anyone else could have done.
When you asked for the referral to the geneticist were you able to do this on the NHS or did you have to buy the service privately?
Good luck for what's to come in December. I think you display an awesome attitude to it all.
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Thanks - to be honest the surgery / reconstruction element is hardly fun but it's a lot easier to deal with than chemo was! It does at least feel like you're doing something constructive to stop the ****er coming back.

I got my gene testing on the NHS, but you have to meet certain qualifying criteria. Mine was having at least 2 relatives and then myself diagnosed with breast cancer under the age of 40. I believe all ladies under 40 diagnosed with triple negative (not related to any hormone receptors) breast cancer also qualify as this is particularly linked to BRCA1 mutations. I was referred by my plastic surgeon to the GP who then had to request the genetics team assess me. Had to fill out a massive family history questionnaire and then wait months and months for the appointment. Results then took 8 weeks... it is not a fast process! I actually got the results 3 days before my mastectomy surgery - so I was pretty happy I'd always requested the bilateral option regardless of the gene results.

If any of my family want to be tested it will be a lot quicker though as they would just be looking for my known gene mutation rather than sifting through all the possible mutations like they did with me.

I do find it interesting how different people feel about knowing stuff like this. I think once you've been the unlucky one it's a total no-brainer. While being a bit of a mutant doesn't automatically mean you will develop the disease, why on earth would you leave it to chance if there is something you can do about it? Since being diagnosed I have made friends with 5 ladies of around my age who have subsequently died of their breast cancer. It's not sensationalist to have preventative surgery - with or without a gene mutation - in many cases it is the only logical option.
 
jon ryan said:
If you're worried, talk to your GP. If this came back with some negative indicators, what would you do about it? Other than worry yourself and your family.

Have a good look at some reviews before spending the money. Here's one: Google
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Interesting read. Thank for posting the link (y)

Daysleeper40 said:
I do find it interesting how different people feel about knowing stuff like this. I think once you've been the unlucky one it's a total no-brainer. While being a bit of a mutant doesn't automatically mean you will develop the disease, why on earth would you leave it to chance if there is something you can do about it? Since being diagnosed I have made friends with 5 ladies of around my age who have subsequently died of their breast cancer. It's not sensationalist to have preventative surgery - with or without a gene mutation - in many cases it is the only logical option.
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I admit I was taken aback by some of the reaction to the concept of this kind of testing. I guess people are sceptical of advances in science though.
Once again, thanks for your insight.
 
Daysleeper40 said:
Sister diagnosed with breast cancer in June 2012 - aged 37. Has since spread and is now incurable. She has also since had salivary gland cancer.
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I'm so sorry to hear that. It really makes me sad to hear. I bumped into her over the summer. As ever she was full of life and an absolute joy to speak to.

Daysleeper40 said:
I do find it interesting how different people feel about knowing stuff like this. I think once you've been the unlucky one it's a total no-brainer. While being a bit of a mutant doesn't automatically mean you will develop the disease, why on earth would you leave it to chance if there is something you can do about it? Since being diagnosed I have made friends with 5 ladies of around my age who have subsequently died of their breast cancer. It's not sensationalist to have preventative surgery - with or without a gene mutation - in many cases it is the only logical option.
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Ricardodaforce said:
Interesting read. Thank for posting the link (y)

I admit I was taken aback by some of the reaction to the concept of this kind of testing. I guess people are sceptical of advances in science though.
Once again, thanks for your insight.
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Its very interesting. I'm nothing like as eloquent as Fi so bear with me. In some situations I don't understand leaving something to chance if you can do something about it. But in my own situation I'm very torn as to if I have testing or not.

My Dad has a very rare, nasty and uncureable degenerative disease. Its occurrence in the general population is about 1:100,000. Because of the hereditary link the chances of me getting it are 50:50. I could be tested for it. But...its incurable. So what will I do with that info?

I don't always think its about scepticism or not. In some cases it seems clear cut, and can have massive value. In others its not so simple, and actually represents a very difficult decision with no end of implications.
 
Ricardodaforce said:
Interesting read. Thank for posting the link (y)



I admit I was taken aback by some of the reaction to the concept of this kind of testing. I guess people are sceptical of advances in science though.
Once again, thanks for your insight.
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It isn't so much an advance in science as an existing technique being made available to consumers. For a price, of course.

Humans have ~20,000 genes, and these tests only look at a tiny fraction of them. And heritability is unpredictable even among identical twins.

It may be a bit better than having your horoscope cast, but probably not much.
 
boyfalldown said:
I'm so sorry to hear that. It really makes me sad to hear. I bumped into her over the summer. As ever she was full of life and an absolute joy to speak to.

Its very interesting. I'm nothing like as eloquent as Fi so bear with me. In some situations I don't understand leaving something to chance if you can do something about it. But in my own situation I'm very torn as to if I have testing or not.

My Dad has a very rare, nasty and uncureable degenerative disease. Its occurrence in the general population is about 1:100,000. Because of the hereditary link the chances of me getting it are 50:50. I could be tested for it. But...its incurable. So what will I do with that info?

I don't always think its about scepticism or not. In some cases it seems clear cut, and can have massive value. In others its not so simple, and actually represents a very difficult decision with no end of implications.
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I totally agree - that's why I chose not to be tested for TP53. Awareness is good - but you already know you're at risk and I assume would be at the Dr's pronto at the first sign of anything untoward.

Of course a negative result would be very reassuring in your case but you absolutely have to weigh up how you would deal with a positive result too.

It's not an easy decision. Have you had any genetic counselling?
 
boyfalldown said:
I'm so sorry to hear that. It really makes me sad to hear. I bumped into her over the summer. As ever she was full of life and an absolute joy to speak to
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...and thank you - while the bc is incurable it is currently being managed so hopefully that will continue for a long long time to come. She is my hero tbh - along with my dad. The way they both deal / dealt with what life has thrown their way is amazing.
 
Daysleeper40 said:
It's not an easy decision. Have you had any genetic counselling?
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Yes - I asked for a referral to see a geneticist and have that appointment in a couple of weeks. I've also got an appointment with one of the few specialists in his condition just to be sure I fully understand my options
 
boyfalldown said:
Yes - I asked for a referral to see a geneticist and have that appointment in a couple of weeks. I've also got an appointment with one of the few specialists in his condition just to be sure I fully understand my options
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Really hope the appointments make the decision a bit clearer - sounds like you are talking to all the right people.
 
Willid1 said:
Just to resurrect this thread because I remembered commenting earlier.

http://www.bbc.co.uk/news/technology-25100878

David
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That's interesting.

From the article
Under FDA rules, the company must provide proof about how accurate its detection methods are as well as supplying the error rates from its personal genome service (PGS).

In a public letter the FDA said that 23andme had not supplied this information, despite increasing its marketing campaign and the scope of its tests.

"FDA is concerned about the public health consequences of inaccurate results from the PGS device - the main purpose of compliance with FDA's regulatory requirements is to ensure that the tests work," said Alberto Gutierrez, director of the FDA's centre for devices and radiological health, in a letter to the company.
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Something you need to be aware of with the FDA is that they have very strict requirements about what you can and cannot claim and the evidence you provide in order to make claims. For example, CA125 is a well known cancer marker that has been used for decades. However if I create a test for CA125 using some of the common reagents available commercially and using common and well understood materials for this type of test, I would still have to produce a large amount of carefully generated data to support any claims I might make about the use of MY test to measure CA125 as a cancer marker.

So what this says to me is not that 23andme is a fraud or the data is wrong, but that they have failed to provide evidence to the degree and in the detail the FDA require in order to support the claims they are making. Bearing in mind this is a relatively new type of test delivered in this manner, it would not surprise me if they were being asked to provide a PMA (pre-market approval) validation which is enormously complex and expensive, approaching pharmaceutical level of requirements. It simply wouldn't be practical for a business of their type, and would likely cost literally millions of dollars. Even if they were asked to submit a 510(K) application where they basically show they produce the same kind of data as previously approved products, it would still be an enormous undertaking.

Worth bearing in mind that the FDA can sometimes be bloody-minded and entirely focussed on the letter of the law while missing the spirit. FDA audits are a thing of terror for non-US companies, and even for those in America, they can still be a real challenge.

Immuno-diagnostics is my area of work.

For any ladies that read this thread in the future who are likely to undergo chemotherapy: if you have concerns about fertility afterward, consider having eggs collected and frozen through an IVF/Fertility clinic.
 
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