California retains the residual blood spots for followup studies, apparently indefinitely – see the section "Storage and Use of Dried Blood Spots":
California currently screens for 79 disorders:
And, results lookup long afterward by disorder is possible, since there's a routine, by-email procedure for checking the sickle-cell status of NCAA athletes:
The policies for the data and the retained sample are described by the 'babysfirsttest' site above as allowing use "for medical intervention, counseling or specific research projects which the California Board of Health approves" and "anonymous research studies". Those sound about equivalent to the 23andMe policy... and at a similar risk of reinterpretation or rule-bending if organizational priorities or technology change.
The California Board of Health reports, however indirectly, to the taxpayers. This accountability, however insignificant you may perceive it, is simply absent from 23andMe.
To summarize your comparison:
- 23andMe collects genomes to please their VC and Wall Street investors.
- The CA government collects genomes to please the taxpayers.
Be honest, and forget your bank account: who do you really trust more?
Even where the profit motive can lead to abuses, those abuses pale in comparison to the history of even very good governments. California is one of the most accountable governments in the world, but in the memory of its living residents has imposed both forced internment of its citizens by their ethnicity (WW2) and forced sterilization (until 1963).
What future crime or health scares could lead to the repurposing of this broadly-collected state data? (It's quite hard to opt-out of this collection, whereas it's costly to opt-in to 23andMe's program.) And if state-repurposing happens, those who implement the change, perhaps including for-profit companies in partnership with the state, can be insulated from accountability, because when the state decides to do it, it is 'legal'.
Perhaps you assign those scenarios much lower probability than the more common and mundane privacy abuses of profit-seeking sleazeballs. OK, fine. Still, the magnitude of damage the state can do, with its powers of compulsion and confiscation, is much larger. Fewer events, yes, but much worse when they happen.
So if you're 'terrified' by the chance 23andMe might misuse voluntarily-offered genetic materials, against their own policies, state law, and customer preferences, you ought to reserve at least some fear as well for the danger from the much larger cache of genetic data, collected without explicit consent, already in the hands of an institution that – when it occasionally misfires – does more damage than any single company can.
"bound by laws" - like the laws and regulations enforced by the FDA?
No thanks. 23andMe is yet another group of shady, for-profit slimeballs making money off people's fears, called out by the FDA for the same kind of arrogant adolescent libertarian horseshit that gave us Vioxx.
And yeah, most of us actually prefer to deal with the "state's shifting policies" - you remember...the policies we vote on.
Nobody should trust any corporation OR government agency blindly. Duh.
But to suggest that corporations are somehow inherently less trustworthy that the government is just... silly. And unsubstantiated.
The problem we have is that it is now easier to collect everything than to be selective and this represents a huge risk to security down the line in all kinds of ways. You could say our data footprints have become a form of pollution. To mitigate we need to flip it and make non-collection the default - e.g. introduce strict regulations around destroying non-critical information with a very high bar for even temporary storage and anonymisation wherever possible.
Do we just forgo all those benefits because of the risk of abuse or data compromise, by any entity anywhere down the line?
Or do we try to figure out the right checks, both in practices and law, to maximize the benefit and minimize the risks? I'm for that iterative discovery of the right balance. And, I think a for-profit company operating under the microscope of consumer/journalist/regulator scrutiny is more likely to find the optimal tradeoffs than a compulsory state collection program, or other solely bureaucratic and legislative processes.
There are real potential abuses of privacy, but we shouldn't let those scare us into failing to progress. The fact is, you leave your genetic information everywhere you go. If any restaurant wanted to get into the DNA collection business, they would never run out of material. In the near future, I wouldn't be surprised if some people argued that any genetic material left at their business was their rightful property, and since you made no effort to hide the fact that you were eating off that particular fork, they shouldn't have to avert their eyes from your DNA or deny its association with you. Perhaps on your next visit to any chain restaurant, they could suggest a menu more appropriate to your specific health needs.
More to the point, it's absolutely necessary to research this stuff. The more samples we can get out there, by whatever means necessary, the better. This kind of research will absolutely save lives, and in no small portion.
It's good to keep the security implications in perspective. However, if privacy concerns held back or halted basic research on biology, they would do more damage from voluntary and legislative protections than they are capable of doing by creating advertising profiles.
There is also an important cultural aspect that makes certain behaviours abhorrent/unacceptable that would need to be tapped into.
Research is a legitimate and beneficial activity that you would therefore expect to be licensed and controlled.
FUD about building a massive database is kind of hard to take seriously when the NSA watches everything and the US government already builds DNA databases.
I would expect 23andMe to be doing some shady Facebook-esqe bullshit because of the profit motive and that is why I have never used them even though I am curious. I expect the state to be doing some shady Facebook-esqe bullshit because of "terrists" but I didn't have the option to not.
So I can both be "at least as concerned about the State of California" and also be 100% against sending a swab to 23andMe. I trust neither more but with one of them I have control over their collection of my DNA.
That's a big part of what makes it more dangerous than what the states are doing, I believe.
(It's a shame, too. I badly want my full ATGC sequence to be a zip file on my hard drive.)
Your DNA is never actually fully sequenced, because that is currently too cost prohibitive...
I'm not sure they bank it. They offer an upgrade that includes more tests, but to take advantage of it you have to send a new sample. An upgrade that did not require sending a new sample would surely have a much higher conversion rate, so I'd expect they would offer that if it were feasible.
Also, based on their recent statements, it seems that 23andMe doesn't actually do any of the lab work, they contract out to a lab partner. Based on the amount of capital they've raised, I would have assumed that they did everything in house. Anybody know more about this?
Maybe one or two -70 freezers full of eppendorf tubes. It's not a significant cost.
Q> Does anyone know the actual/current pricepoint for this?
And, for the places where you can get a $3K genome sequenced, it isn't likely that they will service outside (non-research) customers.
1000$ - 5500$
The page cites only 69 people so far had it fully sequenced, and it cost about $100k a few years ago
I'm more thinking along the lines of what may or may not be possible in 30-40 years, and even then it's an admittedly extreme example.
Seriously, what's the real danger here? I just don't see much. I paid 23AndMe and was generally pretty amused (and sadly unsurprised; not much of anything interesting turned up in my profile).
Actually, it could last an arbitrarily long time if it wasn't exposed to UV or cleaned up. The hard part would be distinguishing your random DNA from that of everyone else.
That's where the article lost me …
"What the search engine is to Google, the Personal Genome Service is to 23andMe. The company is not exactly hiding its ambitions. “The long game here is not to make money selling kits, although the kits are essential to get the base level data,” Patrick Chung, a 23andMe board member, told FastCompany last month. “Once you have the data, [the company] does actually become the Google of personalized health care.”
The reason Google matters is that it demonstrated that the business model of hoarding and capitalizing on personal information works. The rest of the article spells out ways in which 23AM is already capitalizing on its stored information.
Marketing companies and spammers are using this model all the time. AFAIK most of Google's income is from ads which use very little of personal information (yes, I know about targeted ads but I have a feeling marginal utility of those vs. just having ads on Google which everybody uses is not that high).
> [Google makes money ] ... By parceling out that information to help advertisers target you, with or without your consent
Umm. No. 1) don't use Google services. Or 2) go to your account settings and disable personalised ads or 3) browse in incognito mode, etc. There are loads of ways to choose not to be targeted by ads. People seem to constantly feel a need to exaggerate what Google actually does. They don't "sell your data", they don't "track" you, they don't do anything "without your consent".
Not that I think Google needs any help defending themselves here - but what really concerns me is that we can very quickly slide into a kind of technophobia that will take a cynical viewpoint on every form of new technology. Anyone here involved in a startup can be a victim of that, and the level of acceptance by society of new technologies and change is really, really crucial to moving society forward.
Is that really possible today? Have you tried to browse the web without trying to hit Google servers? Do you know how hard it is? No common man is capable of doing it frankly.
You can block cookies to their domains, or just block all third party cookies, and then you will be pretty safe from them doing anything to track you. The browsers make this pretty easy - I would argue that is in reach of 'the common man', or at very least one who can use Bing (however Bing will profile and track you just like Google, of course).
Its one thing to be able to talk and convince Ellison, Gates, Musk, or Zuckerberg to invest in your company; its another thing to sleep with one.
"A male given name, Sergey or Sergei."
This is just the case of a writer and/or editor being too lazy to look up the correct spelling.
Would this be a concern about privacy exist if there was no way your genetic profile could be used against you? If you couldn't be discriminated in any way on that basis, what else would need to be hidden?
I'm not asking rhetorically -- what else do we have to hide about our genes?
Health may become another kind of risks you can't insure against anymore, like divorce or unemployment.
1) More high risk customers buying the insurance concentrates the 'pool' of insured risks...
2) ...leading to more payouts
3) ...leading to higher insurance
4) ...leading to those without the risks opting to take cheaper, lower level coverage
5) ...leading to more concentrated risk in the pool of insured people in the good coverage
6) ...and back to step 2. The insurance fails, or becomes too high a cost to be worthwhile for anyone.
My point was, no, insurance companies can't use the data, even if they had access to the it, which they won't.
No car breakdown insurance lets you take out a policy to cover the vehicle after it has already broken down...
(there's already a link there between YouTube comments and flecks of spittle ...)
Even my health insurance doesn't care, they only worry about diagnosed conditions. Plus any pre-exisiting conditions are covered after three years.
On the other hand, the country where I live has universal healthcare.
[23andMe] ... edged closer and closer to marketing their services as a way of predicting and even preventing health problems. And any kit intended to cure, mitigate, treat, prevent, or diagnose a disease is, according to federal law, a "medical device" that needs to be deemed safe and effective by the FDA.
Providing incorrect or misleading information could lead to people making health decisions with potentially serious consequences. If that information is wrong people could take unnecessary risks with their health.
I hope 23andme is shutdown.
My understanding is they sequence some of your dna, and then link to various publicly available studies to show users "This paper showed this mutation correlates with this disease".
Is that not a correct description of their service? Why do you want them shut down?
The absolute vast majority of people will die from heart disease or cancer. What is the point of paying money to find that out?
Obviously there's also the privacy aspect as well - trusting your DNA to some private company who wants to make profit.
If you have a symptom, or family history of some disease, go see a doctor. That's kinda what they're there for. And they train for years in order that they can interpret results correctly.
"Patients relying on such tests may begin to self-manage their treatment through dose changes or even abandon certain therapies depending on the outcome of the assessment," he added.
DNA is extremely stable at low temperatures so they can periodically re-assay the sample and give you more information on SNPs they have found important or you can opt-out and just get the one sample.