What's this about 23andMe?

[Paw]

So now the FDA is allowing 23andMe to sell disease-oriented genetics testing. I've faced a long-term gumption trap when it comes to ponying up the money for 23andMe -- since every time I've looked into it the disease-oriented genetics seems so limited.

Do folks here still believe it's worthwhile? I remember hearing there are various ways to analyze the data. Is there a way of "jail-breaking" what 23andMe sends you, or is still pretty limited?

This FDA news got wondering again. But from what I can tell from the article it's not a big game-changer for us?

 

[Remy]

So now the FDA is allowing 23andMe to sell disease-oriented genetics testing. I've faced a long-term gumption trap when it comes to ponying up the money for 23andMe -- since every time I've looked into it the disease-oriented genetics seems so limited.

Do folks here still believe it's worthwhile? I remember hearing there are various ways to analyze the data. Is there a way of "jail-breaking" what 23andMe sends you, or is still pretty limited?

This FDA news got wondering again. But from what I can tell from the article it's not a big game-changer for us?

The value of 23andme has never been in their interpretation reports but what is in the raw data.

I don't think it's a game changer because treatment based on SNPs is premature in many ways, but it's certainly interesting if you have the money to spare. I've referred to it many, many times over the years as new studies come out to see what my results are in comparison.

 

[Not dead yet!]

My experience is that the raw data is what's important. For example, if you use Family Tree service, they actually delete raw data from it that is related to diseases. So the 23andme is much better. I also tried getting another service in another country but that was sadly a minefield of scams.

I think only an Indian company offers full genome DNA testing, but you have to pay for the blood draw and mailing yourself. I heard stories it could go above $4k to do that. As long as 23andme remains reliable and offers full raw data I can analyze with other services, it's probably the safest bet.

There are lots of services besides 23andme, but check reviews first because they can merge and then the service quality usually suffers:

https://dnatestingchoice.com/reviews

That site replies to you if you have a problem with a service. When I was nearly scammed (I got my money back) they helped me work it out.

 

[Paw]

Thanks both, good info. So it sounds like the new FDA approval won't change the raw data necessarily, but mainly how 23andMe is allowed to interpret/market it?

What I still don't have a real grasp of is the scope of the raw data from a 23andMe purchase. I understand @Remy saying it's more interesting than conclusive, but does it cover very much of the genetic territory we'd be interested in, or are there gaping holes in the scope? I could afford it if it's relatively comprehensive, but not if it's merely a curiosity covering a few select areas.

@Not dead yet! -- good to know about My Family Tree's practices. And, no, I'm not ready to spend thousands on the Indian company. But if the 23andMe data is, like, 1/1000th of the data, maybe it's worth waiting out the marketplace for a better buy?

 

[Remy]

Thanks both, good info. So it sounds like the new FDA approval won't change the raw data necessarily, but mainly how 23andMe is allowed to interpret/market it?

What I still don't have a real grasp of is the scope of the raw data from a 23andMe purchase. I understand @Remy saying it's more interesting than conclusive, but does it cover very much of the genetic territory we'd be interested in, or are there gaping holes in the scope? I could afford it if it's relatively comprehensive, but not if it's merely a curiosity covering a few select areas.

@Not dead yet! -- good to know about My Family Tree's practices. And, no, I'm not ready to spend thousands on the Indian company. But if the 23andMe data is, like, 1/1000th of the data, maybe it's worth waiting out the marketplace for a better buy?

Maybe this will help? http://www.yourgeneticgenealogist.com/2013/12/23andme-releases-sample-of-their-new-v4.html?m=1

 

[Merida]

I did 23andMe prior to the FDA initial 'crackdown.' There was much important information: likely gluten tolerant, low risk for Parkinson's, but high risk for myeloproliferative neoplasms. And much more : risk assessment for melanoma, lung cancer, gout, Hodgkin's lymphoma, and about 80 other health issues.

My husband's data showed extremely high risk for macular degeneration. Well, he had already been diagnosed with that 4 years earlier.

Then I sent my data to geneticgenie and got a complete methylation analysis - related to specific genetic polymorphismS. Interesting.

I have a feeling that the Insurance companies went crazy over 23andMe medical risk analysis because it encouraged a bit of extra testing. Hence the 'shut down' on the medical part.

So, from my point of view, 23andMe was money well spent.

 

[Not dead yet!]

@Not dead yet! -- good to know about My Family Tree's practices. And, no, I'm not ready to spend thousands on the Indian company. But if the 23andMe data is, like, 1/1000th of the data, maybe it's worth waiting out the marketplace for a better buy?

I noticed there are two Full Genome Sequencing Services listed in the website I mentioned. I hadn't seen them before. Apparently there is a $700 option that has some accuracy issues (one review states they used Y-chromosome tests and she's female, they said it was "the default"?!) and the accurate one is about double that. Plus if they need blood that's probably extra for you. Current reviews are not alarming (I mean not scam-alert alarming). It might be a good fit if you find your 23andme data is not enough. I think that you're on the right track there, the 23andme data is somewhat more limited and targeted for genetic effects on health that we know of, plus some detail of interest to genealogy.

I suspect the dropping of health specific issues by some companies is due to not wanting to maintain HIPPA privacy controls, but I'm not sure.

 

[Learner]

My entire family did the 23andme. It's been extremely valuable in explaining our plethora of serious health problems, and informing our treatment.

We tend to build up toxins, are lousy detoxers, are prone to shredded mitochondrial membranes, and can't metabolize certain drugs, leading to cancers, CFS, autism, Parkinson's, and depression and anxiety.

As other patients have said, it's the raw data that's interesting. There are several tools to translate it. We started with Genetic Genie, but found it inadequate as the SNPs it looks at were too narrow a range.

As for the new health reports, in my case the data was already there. One of the 10 new diseases is the most common hereditary defect, hemochromatosis. I'd already pulled my SNPs from the raw data, and learned what I needed to. They're just making it more user friendly.

The test has put us in control of our health, it's worth it to do.

 

[Tamsyn]

For those of you who found interesting things in the raw data (for e.g. having mitochondrial shreds) did this knowledge translate into actual medical treatments? Were you able to take the info to a doc and get prescriptions/treatments you wouldn't otherwise have had? And/or were you able to use the raw data info to guide you in making changes at home to things such as supplements, diet etc? Or is this knowledge from the raw data just interesting, without being linked to the ability to make real-life changes?

 

[Learner]

For those of you who found interesting things in the raw data (for e.g. having mitochondrial shreds) did this knowledge translate into actual medical treatments? Were you able to take the info to a doc and get prescriptions/treatments you wouldn't otherwise have had? And/or were you able to use the raw data info to guide you in making changes at home to things such as supplements, diet etc? Or is this knowledge from the raw data just interesting, without being linked to the ability to make real-life changes?

Yes. 23andme confirmed my celiac disease was hereditary requiring lifelong gluten free diet, flagged 2 hematologic problems that require medical treatment, and looking through the days in Enlis helped find a high cancer risk mutation putting me in a special surveillance program for early detection, as well as being able to check mutations as the researchers investigate more, like the IDO2 metabolic trap mutations.

 

[Not dead yet!]

For those of you who found interesting things in the raw data (for e.g. having mitochondrial shreds) did this knowledge translate into actual medical treatments? Were you able to take the info to a doc and get prescriptions/treatments you wouldn't otherwise have had? And/or were you able to use the raw data info to guide you in making changes at home to things such as supplements, diet etc? Or is this knowledge from the raw data just interesting, without being linked to the ability to make real-life changes?

23andme was the first to suggest Celiac disease to me. It's shameful how slow the medical community is in testing for that. By the time I knew I had been gluten free for various reasons, for several years. It's like if you're not a child, they ignore you and label you IBS and tell you to guzzle OTC drugs. Well they don't say so out loud, but that's the end result.

I used Promethease while it was one report, one fee. I'm considering doing that again. That led to finding out why for many years I haven't been able to tolerate antidepressant meds. Finally I had a real reason to say no to those. Anyway the last time I was coerced into "just trying it again" I nearly became hospitalized with anxiety and agoraphobia with 24/7 crying spells. Yeah never touching that ever again.

Self decode has helped me figure out some rather odd things, like, they always tell you how rare something is. There are a few things that lead to illness, that only less than 1% of people tested have. And I have one of them. They make it easy to focus on things that are homozygous and fairly rare, and could affect function.

I realized my problem isn't MTHFR, it's MTRR, but either way, I need a lot more B12 than the average person.

So that's the kind of thing you get out of it. And it's really as deep as you want it. I feel like I"ve only scratched the surface.

 

[TJ_Fitz]

For those of you who found interesting things in the raw data (for e.g. having mitochondrial shreds) did this knowledge translate into actual medical treatments? Were you able to take the info to a doc and get prescriptions/treatments you wouldn't otherwise have had? And/or were you able to use the raw data info to guide you in making changes at home to things such as supplements, diet etc? Or is this knowledge from the raw data just interesting, without being linked to the ability to make real-life changes?

There weren't any groundbreaking revelations in my data, but I got some insight on methylation and detox issues.

I'm currently awaiting results of 30x full genome sequencing from Nebula. I expect this data to be more useful, since it's much more complete.