23andMe UK
23andme.comI absolutely love the idea of this.
I just think that I'll end up in a database that, despite any promise to the contrary now, will probably end up being used against me at some point in the future (targeted marking / denying of health insurance / whatever else). Which I really don't love.
And I hate to be cynical, but it strikes me that becoming the Google of genomes is ultimately going to make far, far more cash than selling a kit that tests for genetic problems.
Don't be evil, and all that.
> Don't be evil, and all that.
Does anyone still believe that? I remember when they still had separation between GMail and Searches / Analytics.
My point exactly.
No one stops you from entering a fake name. At least they didn't when I ordered some kits a couple of years ago.
I suppose I'd be more interested if you could buy the kit from a supermarket, and each kit had a unique code and password you could enter online to check for your results. So once the sample is posted, the only thing that connects it to me (without a probably unfeasible amount of detective work) would be my IP address. (And my DNA, obviously...)
Hmm... that would come off as pretty suspicious; it would make it very easy to get away with DNA testing other people against their will.
The 23andme kit requires a substantial amount of spit, so it would be hard to trick someone into giving you their DNA.
In terms of doing DNA testing behind someone's back, paternity testing is DNA testing, and only requires a sample of the DNA. You can buy those kits at walmart already. Search for Identigene DNA Paternity Test Kit.
This kit lets you collect material by yourself. Some other kits/companies require a doctor/nurse signature that they did take material from someone who matched a photo id.
Entering a fake name doesn't really help. If one of your relatives also orders the kit, your name can easily be found out.
In the U.S. at least, GINA (Genetic Information Nondiscrimination Act) prevents insurance companies from denying health insurance on such a basis. However, I don't think it restricts, for example, life insurance from potentially refusing you. And of course GINA could always be repealed.
>> Which I really don't love.
Me neither. Easy solution (at least for now): don't use it.
> denying of health insurance
All the health insurance I've ever had has had cover for pre-existing conditions, required no medical details or medical examination. As far as I can tell, insurance companies have surprisingly little interest in my health, past my age and sex.
I can't see that changing so far that they pay third parties for a genetic screen in the near future.
> As far as I can tell, insurance companies have surprisingly little interest in my health, past my age and sex.
Until you file a big claim.
Just from (UK) insurer Aviva's health insurance policy:
"We don’t cover treatment of pre-existing conditions or related conditions if you had symptoms of, medication for, treatment for or advice about that condition in the five years before your joining date."
It wouldn't take much for companies to start requiring that you disclose the knowledge you're at (high?) risk of something and adjusting their prices accordingly - particularly in long term policies.
Edit: I probably should have said life insurance. Health insurance isn't (entirely) necessary in the UK thanks to the NHS. But imagine the premiums on a life insurance policy if they knew you had a high certainty of something difficult or incurable?
> It wouldn't take much for companies to start requiring that you disclose the knowledge you're at (high?) risk of something and adjusting their prices accordingly - particularly in long term policies.
That's what insurance is though, right? You pay a premium over time relative to their payout risk. If you have heightened risk of serious disease you're not entitled to the same premium as someone with considerably lower risk.
Regardless, other than a couple of exceptions the genetics of complex diseases wouldn't be of much interest to health insurers. A SNP with a tiny effect size associated with type 2 diabetes gives less risk information than taking a look at a person's waistline.
Often (in the UK at least) if your insurance is provided as a benefit through a company rather than buying your policy directly, pre existing conditions will be covered even though the provider would normally exclude them if purchased by an individual.
Typically this is because they are able to make decent generalisations about the total risk pool they are insuring.
Offering 100 policies at £100 makes sense if you can make a decent estimate of the average annual payout being £90. The fact that one guy walks in to the policy knowing he'll cost £500 doesn't concern you.
Offering 1 policy at £100 without any exclusions means that you get adverse selection - a unusually high proportion of your clients would walk in knowing that they'll cost the £500.
In many countries where health insurance is obligatory, regulators have risk pooling between insurers to help negate selection effects (I think this was included in ObamaCare provision but not sure)
This observation likely explains my experience!
23andME technically offer no medical advice, but I wouldn't be surprised if insurers don't care about that technicality
A cautionary tale...
I bought an Ancestry(.com) DNA test a number of years ago. The product had the advantage that it was integrated in to their genealogical research platform (a subscription service). When you found a match in the database you could click straight through to that members family tree
.... then they shut down the "old" platform entirely, gave me X days to download my data, and told me to get lost. Visiting the site today we see "The AncestryDNA product is not currently available for purchase outside of the United States"
Furthermore, their "all new" tests are focused, like 23andMe, on telling you about more gimmicky crap like your health, ethnicity, and ancient migratory ancestry, and not helping you find distant cousins you can work with. Really sad.
I cancelled my ~$160 annual subscription on principle after that
Off topic but have you found any services that are good for tracing one's lineage?
I would pay a considerable amount, probably capped at 10k, for a service that was able to provide me with an accurate, detailed and thorough description of my personal lineage...but I can't seem to find any services that offer it.
I ordered from BritainsDNA for the lineage. I'm expecting the results this month. It was 50% off in a Vouchercloud deal, £74.
I know this is a little off topic, but did you really spent $160 a year to find strangers with whom you share lineage?
What was the draw?
It's not about DNA. DNA was just a means of finding people who know may know more about your family history, perhaps stories or artefacts passed down. Genealogy is more a study of history and how you came to be than anything else. It's a unique puzzle that only you have, and only you will ever have any interest to solve.
Gimmicky crap like your health? huh. I care about more health --- a bit at least. I don't find it gimmicky.
It's gimmicky because we understand so little about how these genetic risk factors actually work for all but a handful of diseases. It's nice to be part of the experiment though.
23andme does help you find distant cousins.
I've had one of these 23andMe kits sitting at home for a while now. I find the information they can give you very interesting and I'm curious to do it. But part of me can't overcome the fear of this data sitting around on a companies servers forever. With me having no way of knowing what they're doing with it. Maybe I'm just too paranoid.
You can opt-out of the long-term storage.
Just as you can delete emails in Gmail or delete your Facebook account ...
Has anyone submitted something other than a human sample? I have to wonder if anyone has submitted a bovine or dog sample as a joke.
They aren't actually sequencing the whole DNA, they are just searching it for SNPs (single-nucleotide polymorphisms) that have previously been discovered in the human genome. For example if they know there is sequence such as AAAC[CG]CTTA in the genome ([CG] being either C or G) they will check which of AAACCCTTA and AAACGCTTA they can find.
So as much as i hate to give such a boring answer, this would probably just result in them not being able to use the sample.
Expensive joke
I've seen more expensive devices smashed on YouTube as a joke.
If I'm in the US, is there any way to proxy into my full health results?
Of course, they're just calling SNPs and using published GWAS studies to estimate disease risk. You can get your "raw genome" text file from 23andMe and convert to e.g. VCF format for use in a bioinformatics tool like the variant effect predictor.
Besides, really the most interesting health-related alleles are the simplest: ApoE, BRCA1 — no complicated algo is needed to interpret those associations.
Thanks for the comment - my wife and I submitted 23andme kits for fun and learned some of our history, but I was disappointed we weren't able to get any health information from it. I didn't know you could get your genome info from 23andme and get it interpreted by someone else!
> You can get your "raw genome" text file from 23andMe
Well, not your full genome. You can get the raw SNPs that 23andMe test for, and if you're in their pilot program that sequences the exome (which is a superset of the SNPs but a subset of the full genome) then you can presumably get the raw data on that.
That's their terminology I believe (hence quotes). However, for fun you can have a go at imputing a full genome from these SNPs (e.g. http://genomesunzipped.org/2013/03/learning-more-from-your-2...). SNPs aren't necessarily exonic either so exome-seq isn't a superset of SNPs (I am a bioinformatics PhD student so while this isn't precisely my day job I'm not speaking from a position of ignorance).
Thanks for the correction.
Is there an easy way (or introductory guide) for someone not familiar with bioinformatics tools?
I've written a free/libre open source java client for the 23andMe API here
https://github.com/heuermh/personal-genome-client
Let me know if you would like any help with the analysis.
The pricing doesn't make much sense. It's $99 in the US, and $195 in the UK (125 pounds). It's cheaper to order the US version to the UK.
The shipping used to be $90 I think (because it's tracked there and back international delivery).
I suspect if they want to develop the UK sales at all, they will need to adhere to certain regulations regarding what information they give out, rather like what the FDA does. This means treating UK customers slightly differently, which incurs additional expense. I'm not hugely surprised.
Ya, it's $199 here in Canada. It looks like the one in Canada offers health and ancestry. Does the US one still only do ancestry?
I really would like to get my DNA anaylsed out of pure curiosity, but I'm also afraid I might discover something I would have been better not knowing.
I did 23andme myself before the FDA came down on them and I'm happy for the things it tells me. What would you be better off not knowing?
Such as?
Such as a 20x heightened risk of developing Alzheimer's relative to baseline (as determined by your ApoE variant).
Yikes, are you worried?
Has there been any update on their Health Reports being supported again? That's the killer feature that I'm waiting for them to turn back on.
Personally I'd be much more comfortable taking the results and doing my own research or getting a Doctor's advice. I don't see how they can ever turn that feature back on when the risk of people blindly following the advice (and the chances of it being incorrect) are high enough.
The power to do data analysis and then inform their users of potential trouble is, in my mind, the entire point of their service.
It doesn't have to be provided as 'advice' but rather a general statement such as '...other members have genetic markers that indicate a propensity toward heard disease; you share these same genetic markers and should be aware of potential issues in this regard.
That sounds fine with me actually.
Sadly not an alternative if you weren't too comfortable with your genetic data being stored in the US. From the .uk privacy policy:
>By agreeing to our Privacy Statement and Terms of Service, you consent to the storing and processing of your personal information, including sensitive information, in the USA and countries outside of the country you live in.
When this will be available in the rest of EU countries? Do they have to register the service in each country separately?
I am in the UK and had previously purchased from the US. This morning I got an e-mail offering me health reports (based on my previous test results). Very nice.
I'm interested in doing this. Can someone who has already done it give me an idea of the kind of things I might discover which I can actually act upon? Although it would be interesting paying £125 for a list of things that might happen isn't very appealing unless I can work to mitigate them or use the advice to improve my life in some way. Considering the privacy implications the benefit needs to be pretty big.
https://www.23andme.com/en-gb/health/reports/
For each disease, they will tell you what the average risk of developing it is, and then they will tell you what they think YOUR risk, based on your DNA.
For example, average woman will develop breast cancer, say 3%, but you might be at elevated risk, say 8% because you have the BRCA1 mutation.
As far as changed behavior, for most cases you're unlikely to do much, except perhaps go to the doctor a bit earlier to get a mammogram.
[Apologies for using female examples, if that's not your gender.]
Definitely interesting. I just need to figure out whether the benefits of knowing those things and paying attention to catch them early is worth the cost of potentially constantly stressing out and over reacting.
What lifestyle changes would you make, and why can't you make those without a genetic test?
Full health reports have been made available again in Canada for a month now.
This ought to turn up more relatives in relative finder!
A functional way to show middle finger to FDA.
I'm curious, have companies like this ever been subpoenaed for their data as part of a fishing expedition to catch a criminal or find the father of a child for child support, etc?
To example, there's been a few examples where they found someone through relative('s) DNA for murders in the past, but DNA was voluntarily given.
If one gives their DNA voluntarily (for a particular case) and they are cleared of any wrong doing, is their DNA information still kept on file by law enforcement?
England has an extensive DNA database (largest in the world) and it's hard to get taken off it, even if you voluntarily give your DNA. http://news.bbc.co.uk/2/hi/uk_news/7532856.stm
> Innocent people who volunteer to give a DNA sample during a police inquiry, for instance to help narrow a police search in a major murder investigation, also have their details kept on record.
Most people don't volunteer their DNA; it's taken off them when they're arrested, and it's kept even if they're not convicted. It's even kept if they're released without charge, although there are time limits for that after a 2008 case. http://news.bbc.co.uk/2/hi/uk/7764069.stm
Voluntarily or not, the answer is usually yes: http://www.nytimes.com/2009/04/19/us/19DNA.html https://en.wikipedia.org/wiki/National_DNA_database