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.

If you have a gene for cycstic fibrosis and your boyfriend happened to have the same gene. You could make a plan for children early instead of getting a shock later. Move somewhere with the best healthcare for example. Or if you both had other genes for rare diseases, you could delay parenthood do that you are financially secure and could live on one wage perhaps. It’s the future anyway, that cat can’t be put back in the bag.

Yes but genetic testing for CF is a diagnostic test, the DIY tests are purely predictive.

Bowl the part you are leaving out of your analysis is the lives that are saved by the drugs developed. My ds has a rare genetic disease and I am eternally grateful for the treatments he is receiving as a result of genetic testing on enough patients that a useful data pool was established and a drug was identified. I would be thrilled if the doctor/company who did the genetic testing and analyzed the results and came up with the treatment solutions, made zillions of dollars. They made it possible for my child to live a happy healthy life.

I don't understand why it's perfectly ok to make pop stars and movie stars and athletes rich by participating in their data mining (through social media etc.), but when it comes to scientists and doctors who are saving lives, it's considered distasteful.
I think that often people are so negative about predictive genetic tests because they don't understand statistics.

I had genetic testing for the Jewish genetic diseases because it's something the Jewish community pushes awareness for as much as possible. My DH isn't Jewish so the likelihood of us both being carriers was vanishingly small - but CF was certainly a possibility, even if diseases like Tay Sachs are almost exclusively in the Ashkenazi Jewish community. Organisations such as JNetics run events to get tested. But that's for very specific diseases within a specific community. Equivalent would be thalassemia or sickle cell anaemia in other communities.

I think that often people are so negative about predictive genetic tests because they don't understand statistics.

Predictive genetic tests are far removed from diagnostic genetic tests.

Dementia Uk and places may be doing trials for people with APOE4 so I'm grateful for the knowledge. It is helpful to know for the future to do more for prevention, might helps others also. Quite a lot of us with the gene.

Also, it tells you things like which genes have better response to things like chemo for if you ever had cancer, or and responses to other drugs. I can't tolerate NSAIDs for example. Surely useful to know?

but when it comes to scientists and doctors who are saving lives, it's considered distasteful.

I am one of them :) I’m a scientist who now works in clinical trials. The point I suppose is that it’s not the scientists or the docs who get the money - it’s the people who run the pharma companies.

I have no issue with data being used with consent - but if a genome is worth 200k to a company who will profit from it then some of that money has to go to the patient or person that genome belongs to. There’s also a big difference between an academic using data in a non profit situation and a company making billions from it .

Some predictive genetic testing is very similar to diagnostic genetic testing eg for Huntington’s. The Jewish community are at the forefront of genetic testing, but it just around the corner for all couples. Instead of checking with the rabbi if you’re a good match, I predict dating sites will compare dna to find warning flags for rare genetic diseases that couples might pass to their children.

Instead of checking with the rabbi if you’re a good match, I predict dating sites will compare dna to find warning flags for rare genetic diseases that couples might pass to their children.

Someone is ahead of you on those thoughts. I read this last year THE ONE

Oooh, would you recommend it? That sort of thing is just my cup of tea!

@Slanetaylor, I really enjoyed it! Worth a read.

Thanks! It’s in my amazon shopping cart!

Hope you enjoy it!

@Slanetylor I imagine Jdate could well be working on that feature!

In the UK there is an agreement in place between the government and the Association of British Insurers so that no one has to reveal the results of a predictive genetic test (unless it is for Huntington disease for life insurance policies worth over £500,000).

In the long run that cannot last. Insurers will insist on testing - they will say that the result is as much part of the context as what your parents and grandparents died of, with the difference that some people don't know, some say they don't know, and some know but lie and don't get caught.

Worth noting that all testing for the Jewish genetic diseases through JNetics includes mandatory genetic counselling, whether it's done F2F or via a saliva kit (where a phone consultation with a genetics counsellor takes place)

In the long run that cannot last

Funnily enough andrew I was talking to someone this week at work about this because someone on another post pointed that out. She (person at work) is fairly plugged in to such matters and this is her opinion too - it won’t last as an exemption.

Not sure if anyone is aware but almost the entire population of Iceland has had a lot of sequencing done and a databasebhas been created. Because it’s a small homogenous population with amazing genealogy records (due to good admin and the naming structure) this database is gold. They have put very strong rules in place over who has access and for what.

It’s access to and profit from the data that’s the problem. Fairer, more transparent ways of using and compensating for our data need to be drawn up. The data itself can benefit humanity greatly, as sofia points out above. We just need to make sure it’s used right.

Not sure if anyone is aware but almost the entire population of Iceland has had a lot of sequencing done and a databasebhas been created.

Yes, I used Iceland as the main basis for my thesis, also in part the genetic company deCODE. At that time they offered predictive genetic testing, I have no idea if they still do.

Just checked, deCODE discontinued their predictive genetic testing, it was advertised as deCODEme.

But Bowl , the scientist and the docs are getting some of the money...it's creating jobs and research funding. My father was one of the most cited scientists in the world and in his later years of science could not get a NIH grant and got (and still gets) all of his funding from private sources. And they are finally teaching genetics in Medical school because it's an employable skill!!!

What type of genetics are you working on?

You can’t just casually drop that in! Your father was one of the most cited scientists IN. THE. WORLD!!!!! That is amazing to me! Your like science royalty then. I’m just a bit excited.

Yes, I grew up with lots of nerdy scientists. (My father gave us all the 23andMe testing for Christmas (never mind he's Jewish) one year.) My mother was also a professor of biochemistry and more specifically a geneticist.... Dr. Rhonda Patrick who is mentioned above actually worked for my father up until recently and recently co-wrote several papers on Vitamin D with him. I, however, got a D in Biochemistry at university....I wasn't so good with 8am classes back then, but when my ds was diagnosed with mitochondrial disease, I had to go back and relearn a lot of stuff. It's completely coincidental that my father is an expert on mitochondria...at least it meant that I got access to some of the best scientists and doctors in the world.

Just ordered that book recommended from the library....don't know if it's the same in the UK, but here in the USA you can just join a bunch of local libraries and get all your ebooks and audiobooks for free online from the comfort of your own home...and not give money to "buy" them from Amazon when in fact you aren't really "buying" them but rather purchasing the rights to a license to read it.

Also, it tells you things like which genes have better response to things like chemo for if you ever had cancer, or and responses to other drugs. I can't tolerate NSAIDs for example. Surely useful to know?

Would you go against the recommended treatment regime of an oncologist based on this test if they didn't think it was valid?

And have you ever had an NSAID? Ibuprofen? Did you tolerate it or not? What value is this test going to show? If you have taken ibuprofen in the past and tolerated it fine the test result isn't useful. If you've taken ibuprofen and not tolerated it the test confirmed what you know. If you've never taken an NSAID in your life are you going to avoid them based on this test? If so I'd want to know what gene result that is based on and what the accuracy of clinical correlation is, because I've never heard of it.

the scientist and the docs are getting some of the money...it's creating jobs and research funding.

I think it's incredibly naive to think that funding scientists' research will be the main outcome of commercial DNA storage and sales. It's like thinking Facebook are an altruistic company because they put some money towards charity. These companies will sell this information to anyone. As I said, I wouldn't be surprised if the OP gets ads targeting these results. Aged care facilities, lawyers who deal with power of attorney, health groups offering bogus treatments etc. Look at all the things (frankly bonkers) they test for as part of their full report and see the marketing potential. For example:
Caffeine consumption: decaf brands
Deep Sleep: bed companies
Lactose intolerance: lactose-free brands
Genetic weight: any number of weight loss brands
Back hair: trimmers
Bald spot: hair regrowth companies
Unibrow: beauty therapy

I'm very concerned that the company accepted and processed a 5 year old's saliva as per pp. That is highly unethical. Should I get all my 3 pre-pubertal DD tested for BRCA? If they're positive what should we tell them to do with their breasts? The list of serious diseases they test for in their US market is staggering. Batten disease, Canavan disease, a whole raft of other metabolic disorders... That ordinary people should receive these results and not know how to process that information is highly concerning.