23andMe UK(23andme.com) |
23andMe UK(23andme.com) |
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.
Does anyone still believe that? I remember when they still had separation between GMail and Searches / Analytics.
Me neither. Easy solution (at least for now): don't use it.
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.
Until you file a big claim.
"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?
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
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.
What was the draw?
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.
Besides, really the most interesting health-related alleles are the simplest: ApoE, BRCA1 — no complicated algo is needed to interpret those associations.
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.
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.
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.
>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.
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.]
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.
> 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
https://github.com/heuermh/personal-genome-client
Let me know if you would like any help with the analysis.
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.
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)
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.