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23andMe Is Terrifying, But Not for the Reasons the FDA Thinks
- boon 13y agoDoes anyone know if 23andMe would be restricted from disclosing your info under HIPAA?
- fat0wl 13y agoyeah that's what I'm curious about. For example if we went to Electronic Medical Records i'm not sure the companies could just dig stats from that. But I guess what's alarming in the case of 23andMe is that they've taken the tactic of ignoring FDA. If a company goes rogue and takes "corp vs. the gov" attitude they are probably gearing up to push some limits that their consumers may not be prepared for and which may not technically be legal "yet" (while they try to lobby to change laws).
- joering2 13y agoNot answer you directly, but this should concern you as well: https://news.ycombinator.com/item?id=6550198 https://news.ycombinator.com/item?id=6550198
- ams6110 13y agoIf they don't think FDA rules apply to them, why would they think HIPAA rules do?
- zmmmmm 13y agoHIPAA and FDA are completely independent. HIPAA is much broader and at the same time much less cumbersome to comply with. I'd be extremely surprised if they weren't being HIPAA compliant, not just because of the law but because HIPAA doesn't ask much that they wouldn't be insane not to do anyway.
- pstuart 13y agoI know I have the bright light/sneezing mutation :-) 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?
- pfortuny 13y agoAssume you are a woman or older than 40. Can you know wherher you have been discrimined, say, when applying for a job? It is illegal... But it is quite likely unnoticeable as well.
- svachalek 13y agoHm, let's see, these markers indicate a high probability of low intelligence, and over here, shall we say lack of industriousness. Here's one that's tied to problems with authority. And this one is correlated to serious chronic health problems, how much sick leave do you normally take? By the way did you know your Dad is the same as mine?! I sure didn't.
- pstuart 13y agoI think that all of those examples could be datamined today without any genetic testing (and probably are).
- cdavid 13y agoIt is highly disruptive in terms of insurance. Insurance can only work if many people pay for the few who actually need the insurance. The best way for insurance companies to increase profits is to get rid of the people who actually need them from their pool: if they can have access to a good set of indicators to remove people with high incidence of diabete, kidney failure or cancer, they will use it. And once people understand that, nobody will use insurance anymore. Health may become another kind of risks you can't insure against anymore, like divorce or unemployment.
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- chmars 13y ago'Sound paranoid? Consider the case of Google. (One of the founders of 23andMe, Anne Wojcicki, is presently married to Sergei Brin, the founder of Google.)' That's where the article lost me …
- joering2 13y agoWe are living in the world of connections. You may have extremely low IQ and live off the streets, but if you know right/powerful people then you are very "rich" to other people. 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.
- mcphilip 13y agoSure, that was an awkward transition, but you gave up too early. One paragraph later justifies this: "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.”
- barista 13y agoThe author is trying to use that relationship to stress a point which stands no matter whether the founder is related to Google founder or not. Take that piece of information out and the point that the author is making still stands. Google has showed us that by luring people to share their private information, it is possible to sell your users eventually. Now you don't have to be related to a Google founder to learn and use that business model. If there was any other company that followed the same practice and didn't explicitly allow me to own my data and delete it from their databases I'd be worried about that company as well. No matter whether they are related to Google or not. The relationship to Google just make me extra worried because of the history of Google.
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- gvb 13y agoI wonder what 23andMe would find if I submitted my dog's spit. Might be worth teaching him to spit.
- nickzoic 13y agoOn the Internet, nobody knows you're a dog ... until you link your Google+ and 23andMe accounts. (there's already a link there between YouTube comments and flecks of spittle ...)
- gnarbarian 13y agoI considered getting sheep spit and sending it in claiming that I was welsh.
- charlieflowers 13y agoAnyone remember that old joke where the magical computer took someone's faked up "sample" and said several accurate things, like, "Your wife is cheating on you, your dog ate your golf balls, and if you don't cut back on masturbating you'll never get rid of that tennis elbow"? It would be a pretty good fit here if I could just remember the details :)
- js2 13y agoAlternately, you could submit your own spit to Wisdom Panel.
- 6cxs2hd6 13y agoThe grass is greener on the other side of the fire hydrant. I wish I could teach my dog _not_ to slobber his DNA all over everything. If my home were ever a crime scene, CSI would be barking up the wrong tree looking for suspects.
- rwmj 13y agoCan someone summarise why the FDA have any say in genetic testing? It's not as if they are selling a drug or other substance that might be incorrectly made or labelled. Presumably spitting into a vial can't cause harm.
- booyaa00 13y agoIf you're going to market something that can allegedly test and diagnose illnesses, it sure as hell should be tested and regulated. I hope 23andme is shutdown.
- mynewwork 13y agoI don't understand the anger and animosity at 23andme I've seen on HN lately. Maybe I'm not understanding something the way you are. 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?
- booyaa00 13y agoThe problem is, most people aren't trained doctors. They will have no idea how to interpret the results. They will likely go waste their own doctors time worrying about everything. 23andme is preying on some peoples fears, and turning them into hypercondriacs. 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.
- route66 13y agoYes, of course. The article does that. [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.
- parallax7d 13y agoRecently watched Gattaca. Found it interesting how in that world, DNA profiling for job placement was illegal, but because the technology was so widespread and available, it was easy to circumvent the regulations without getting caught. Just shake someone's hand or take a drug test, and they have your entire genome.
- lukifer 13y agoI was excited about 23andMe, but I decided against it solely for this reason. You can change your passwords, but you can't change your genetics. Whether it's the mundane and real concern of invalidated health insurance claims, or the far-flung hypothetical concerns (future clandestine organizations developing individually targeted assassination viruses), giving away one's genetic code involves too much risk and moral hazard. (It's a shame, too. I badly want my full ATGC sequence to be a zip file on my hard drive.)
- alsocasey 13y agoClarification: while 23andMe could fully sequence your genome using the sample you provide (which I assume they bank...), that's not what they actually do currently - your DNA is instead chopped up into short segments and run on an Illumina SNP genotyping microarray (to obtain variant calls at thousands of genomic loci found to be relevant in various association studies). Your DNA is never actually fully sequenced, because that is currently too cost prohibitive...
- tzs 13y ago> Clarification: while 23andMe could fully sequence your genome using the sample you provide (which I assume they bank...) 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.
- alsocasey 13y agoThat's interesting. I just assumed that they would, since DNA is pretty stable once extracted and storing nano or micro liters of materials, even at -80C, shouldn't be too expensive considering the upside.
- epistasis 13y agoThey require a good amount of spit, in order to ensure that they get enough DNA from each sample. It's quite likely that they're not left with much afterwards, and for many of their samples there may be nothing left at all. Banking the DNA is a whole other hassle. Banking the 500,000 samples that they've done so far would require quite a bit of freezer space. 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?
- tokenadult 13y agoThis commentary points out, "But as the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public." Yes. That was reported in a Fast Company magazine profile of 23andMe[1] submitted here to HN 44 days ago, with a lot of discussion.[2] The basic problem that 23andMe faces is a business model that by its own acknowledgement really doesn't provide much benefit to the consumers who are paying to have their DNA SNP-sequenced and their personal health history data collected for 23andMe's use. [1] http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-what-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-... [2] https://news.ycombinator.com/item?id=6549600 https://news.ycombinator.com/item?id=6549600
- ris 13y agoWith 23andMe I'm waiting for the entertaining family scandals to happen when people suddenly discover they have cousins they didn't know about. It's going to be a cataclysmic mass phenomenon and there's nothing anyone can do about it.
- thret 13y agoI think this article is a little short sighted. DNA profiling may be bad for some people in certain situations (health insurance), but the long term effects, for our species as a whole? I don't have a problem sacrificing my individual genetic privacy if it brings us closer to a Gattaca style utopia.
- gojomo 13y agoIf my fear was that an organization holding genetic data was going to break policies and law against my interests, I'd be at least as concerned about the State of California (and other states). Every state (by federal law since 1963) screens almost every newborn baby, via a blood test, for genetic diseases: http://articles.latimes.com/2013/jul/19/opinion/la-oe-timmermans-infant-genetic-screening-20130719 http://articles.latimes.com/2013/jul/19/opinion/la-oe-timmer... California retains the residual blood spots for followup studies, apparently indefinitely – see the section "Storage and Use of Dried Blood Spots": http://www.babysfirsttest.org/newborn-screening/states/california#second-section http://www.babysfirsttest.org/newborn-screening/states/calif... California currently screens for 79 disorders: http://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersDetectable011312.pdf http://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersD... 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: http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthletes.aspx http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthlete... 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.
- Sheepshow 13y agoLook I know that much of HN has a libertarian and pro-corporation bias. But, I think the article is pretty specific about the profit motive being cause for concern. 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?
- incongruity 13y agoMoreover, if I understand the situation correctly, states aren't outright sequencing and compiling the full genome from each of those spots - instead, the blood spots themselves are being saved. That will make it signicantly harder to access and misuse the genetic data contained therein. 23andMe, on the other hand, has that data in a much much more accessible and centralized form, though it too doesn't fully sequence it. Yet. That's a big part of what makes it more dangerous than what the states are doing, I believe.
- sitharus 13y agoI signed up for 23andMe, got the results, had a brief chat to my GP. She said it's interesting, but only useful if you're looking for the source of a problem. 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.
- DennisP 13y agoIn the U.S., denying insurance or raising rates based on pre-existing conditions will be illegal as of Jan. 1. Doing these things based on genetics has been illegal for several years now.
- smsm42 13y agoThe article failed to terrify me. Yes, genetic testing is coming, and yes, very soon genetic information will be as easily accessible as any other information about the person. The governments already have large DNA databases, and those will expand. There's no "portal" that 23&me is luring us through - there's the future towards which we move inevitably, and since the technology exists, it will be used. Out of all possible usages of this technology, the one 23&me presents seems to be pretty benign. I'd rather be afraid of the government of which I have very little control and which knows or can know pretty much everything about me than of the company that can be shut down by any FDA bureaucrat.
- vitno 13y agoThere is a lot of unwarranted 23andMe hate going on here. Not only do they offer at the end of sign up to delete/remove your genetic sample, you can also inform them you want to do this at any time. 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.
- brent_noorda 13y agoI hope the FDA forces 23andMe to take back their results that I'm getting Alzheimer's. Unless they already have. I forget.
- namuol 13y agoPretty sure we need laws that protect this information from predators.