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.

I kind of follow the blood sugar diet which is a low carb med style thing. I agree the lifestyle changes anyone can do. It can tell you more info for example there are other genes also, for example and maybe ways to manage them. For example, an iron overload one or several, have been linked and if you had them, could check your iron, or vitamin D for example. and it can rule out any other genes. I am glad to know I don;t have two 4s as well.

No it doesn't have pasta as low carb.

I read somewhere and 23andme have links to google who will now have access to your information. They also have smart glass and facial recognition technology. That blows my mind a little...I'm really sorry OP but I think you are crazy for using them and getting genetic analysis with no guidance or support. The consequences could be greater than you can imagine. That information is out there now...

Yes and they sell your 'DNA' to drug companies. Genentech is a huge investor in the company. The fact it is run by an entrepreneur says it all - it's all about the $$$

So how would my DNA going to Genentech help them make a profit? Is it a prevalence in the population question, so they can figure out how many people in population have genes xyz?

They do look at dada to help people too, they ask if you want to take part and you don;t have to. So they can look at certain gene patterns and traits. It is interesting.

They are doing an offer for Father's Day I noticed if anyone is interested.

www.23andme.com/en-gb/?utm_source=google&utm_medium=cpc&utm_campaign=Search-Alpha-Brand&utm_content=23c_Search_Paid_Brand&gclid=CjwKCAjwpIjZBRBsEiwA0TN1r5OcfuPXdS1P55mi6WWmu-XVQ0gFRRqL7IqWIGkTaXGBjYvTqA3knBoCq6oQAvD_BwE&gclsrc=aw.ds&dclid=CPTd0qbX0tsCFVXhGwoduaAJ_w

Info on privacy with 23andme

www.23andme.com/en-gb/privacy/

You should probably supplement with Omega3 phospholipids and Omega 3's if you have the APOE4 gene. I believe that that's one of Dr. Patrick's main pieces of advice (as well as Vitamin D).

Thanks Sofia, yes I have got some ideas and there is a good site set up by a 4/4 online as well. They discuss all the recent research etc. I've been able to look into things like genes for iron and how that affects it also (quite a few of us have genes for hereditary iron overload which can get worse after menopause and that can be linked with risk) so that is good to be aware of.

Also, yes have genes for Vitamin D deficiency which also came up in the bloods my GP did, so supplementing that.

I’ve also had 23 and me testing and comeback with the Alzheimer’s gene. To be fair It was probably a waste of time getting done, I was more interested in the family history side. I have mixed race heritage and there was lots of unanswered questions ect. My mum researched it but was to frightened to go ahead because of the hole cancer gene thing, so I volunteered. To be fair you need to take everything it says with a pinch of salt, I found it rather rubbish. Apparently I’m more likely to have wet earwax...... What a life changing discovery

The issue I have with this is the lack of understanding about genetic risk- e.g. Angelina jolie had 87% risk of getting breast cancer. She didn't. She had zero % risk or 100% risk- she would either get it or not. 87% risk means if you had 100 women with the same set of circumstances, 87 of them will develop the disease - in this case breast cancer. With jolie, her "treatment" was much more extensive than if she actually got breast cancer. Plus, risk reducing surgery has not been shown to impact on survival- only incidence in brca1/2 carriers. So all that surgery is not saving her life. Plus there are probably about another 1000 or so variations of brca1/2 which No one knows are harmful or not. There are just too many genetic and non genetic influences to make testing really worthwhile unless (and even then it's not straightforward) the risk of disease is 100%. They used to say that about Huntingtons but that data has subsequently been revised in light of newer scientific evidence to suggest it might not be. And for younger people getting tested - there may be implications on taking out insurance, mortgage etc if identified as "high risk". There's still too much unknown but companies like 23me are selling it as certainty and taking it in. Owned by wife of Google and some serious ethical issues around it all.

Also - people dont have the "Alzheimer's gene" - we ALL have these genes. Its variations in them which may predispose but there could be thousands of variations with no real understanding of the ones which may be harmful.

The mutation in brca genes can cause ovarian cancer. There’s no good test of ovarian cancer. Angelina Jolie saw her mother die from it. Once you have strains things are already bad. You can remove your ovaries and turn into an old woman over night. You can’t have hormone replacement because it increases breast cancer risk, which you are already at a hugely increased risk of getting. Unless you remove breasts.
Removing breasts as a “ treatment” is actually not worse than dying.

how would my dna going to Genentech make a profit

An incisive question. And an important one.

Dna is data. Your genome sequence reveals data about you AND data about your family.
The companies that do thesevests send out tons of quiz type questions too and those, in conjunction with the data are what’s useful. It’s estimated that if you’re basing a clinical trial on human genetics data you double the chances of it getting to market. It costs an average of a BILLION dollars to do a drug trial. So in effect, doubling your success rate saves you have a BILLION per drug. That is a lot of cash.

Genomes can be data mined, they can be used for law enforcement and they can be used for ancestry. But the big money is pharmacy. Pharma is paying companies tens of millions for small (couple of hundred) people datasets - and the people whose DNA it is and whose data it is don’t see a penny.

www.newscientist.com/article/mg23631462-500-dna-testing-firms-are-cashing-in-our-genes-should-we-get-a-cut/

Saves you half a billion... typo.

fucking loads of money anyway

Sites like 23andme have also been criticised recently for their involvement in DNA matching relatives of unidentified criminals (i.e. Golden State Killer) and unidentified decedents (i.e. Lyle Stevik). These people were identified using familial DNA matches from these sites.

Might seem like a great thing, but the protection around your identity is pretty bloody loose. No chance I'd be submitting my DNA to any company like that.

No I wouldn’t submit my dna to a database like that.
Mining dna data to make better drugs isn’t evil though.

From that article 60 million dollars paid for 300 Parkinson’s patients DNA. That’s 200k per person.

That’s how valuable this stuff is.

No the mining itself is a useful tool. It absolutely should be used - but with proper consent, proper controls and where they can, a payment to the patient.

Private enterprise is making a lot of money from this. The patient should get a cut.

I wouldn’t do it. What’s the point? You can’t prevent it and so why waste years of life worrying about something that might never happen?
Someone might test positive for something, spend their entire life worrying about it and then die of other causes.
Life is short enough. Unless it’s something that they can get in childhood and that knowing can actually prevent it, why have a black cloud hanging over them for the rest of their lives?

So how would my DNA going to Genentech help them make a profit?

Babelfish explained it perfectly. Genentech have paid millions of dollars to 23andme for access to their DNA databases. Big Pharma = multi billion $$$ business.

Myself and quite a few other people I know have vitamin D deficiency problems. This can easily be traced back to lifestyle including in some cases the blanket use of sunscreen.

I've had discussions with research scientists and pediatricians over this, in short they are of the opinion that genetic testing to show that you are likely to have a vitamin D deficiency is a waste of money unless it is looking for the reasons why as a child you have growth problems, your bones break or similar. I should add some of these people have also suffered vitamin D or other vitamin deficiencies.

As I pointed out before unless a disease/condition is 100% genetic then you are wasting your money. In addition if you are happy for companies to mine your DNA - and some people with rare conditions are so put themselves on medical databases - then go ahead.

Not to put my tin foil hat on or anything but I think I'd be a bit wary of what the company did with my DNA. It's the most precious data you have, and i'd need to really read the T&Cs to make sure I felt confident they weren't selling it off to third parties or similar.

Interestingly that's how they recently caught a serial killer in the USA (EARONS) - a relative of his submitted his DNA and they matched it with his to find him.

Re serial killer, interesting article here, in particular paragraphs 5 and 6.

www.bcm.edu/news/genetics/ethicists-law-enforcement-genetic-databases