23andMe is raising about $200M, led by Sequoia | Hacker News Reader

23andMe is raising about $200M, led by Sequoia

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181 pointsdoener168 comments

I really liked the old 23andme and was an early customer. I felt it did a good job of presenting scientific conjecture with notes on confidence and how to use the data. It gave me some encouragement to cut down on my caffeine consumption, and to exercise more to try to influence specific gene expression, and if I was a carrier for a serious genetic disease, I definitely would want access to that information.

I logged in recently after not looking for a few years and was so disappointed with what the site has become--essentially ancestry astrology with the defaults presenting a preposterous level of precision on your racial mix. I'd like to think that this was just a result of inflexible regulation from the FDA, but I suspect that they are also bending to market demand for meaningless information like how 1 or 2 of your 64 great-great-great-great-grandparents happened to share some genetics with a bunch of people from the Asian steppes.

On the other hand... I do enjoy reading about identitarians of all stripes having emotional crises when they learn that they can't claim purebred status.

You can always export your genetic info from 23andMe and plug it into SNPedia. The user interface isn't as nice but it has more SNPs listed than 23andMe did.

You can also export to Found My Fitness for some free detailed reports focused around diet/cardio health. https://www.foundmyfitness.com/

What in your genetic makeup told you to cut down on caffeine? I'm a passionate coffee drinker, and have been sipping coffee the entire day since my teen years, so I'm interested in what you identified as a risk.

Perhaps https://www.snpedia.com/index.php/Rs762551

There's an allele that leads to slower caffeine metabolism.

There is a SNP that determines whether you are a slow or fast metabolizer of caffeine. Depending on your genes coffee consumption has been linked to breast cancer and heart attack rates. Mostly I always had assumed I was a fast metabolizer and could get away with drinking loads of coffee, and realized that I was pinning my metabolism and getting poor quality sleep. I was better off titrating down and finding alternatives.

https://www.snpedia.com/index.php/Rs762551

Even though 23andme doesn't present this information anymore, as noted elsewhere on this thread, there are other websites such as promethease, genetic genie, found my fitness, SNPedia, etc, which you can upload your raw data to. Some focus on specific topics.

> I really liked the old 23andme and was an early customer. I felt it did a good job of presenting scientific conjecture with notes on confidence and how to use the data. It gave me some encouragement to cut down on my caffeine consumption, and to exercise more to try to influence specific gene expression, and if I was a carrier for a serious genetic disease, I definitely would want access to that information.

So I wonder what exactly in the 23andme data made you do these things. I don't know about your caffeine intake, but if you drink a lot then I could've told you to limit it without any genetic data. And I certainly could've told you to exercise more.

Don't get me wrong: I'm not opposed to genetic testing. If people want to know their genes, ok. (I have done a 23andme test myself.)

But realistically there isn't a lot of data that is useful for lifestyle changes. The idea is "If I have disease X risk in my genes I can do something against it". However "something" usually means "exercise, eat healthy, don't smoke, avoid injuries, do all the boring stuff everybody knows". You don't need a genetic test to tell you to go to the gym for your health.

Sure. Everyone knows they should exercise more, but what tips the balance in general, and what tips it on a day when you feel like crap and would rather surf Hacker News or go back to bed? Friends or family you exercise with, a loved one getting sick, a realization that your body doesn't work as it used to when you throw your back out, a gym opens up near your house? Which straw strengthens the camel's resolve?

I wouldn't say that 23andme data was the only or even main factor, but for someone with a scientific bent, having read a few studies that showed an x% improvement in odds on avoiding a disease that I didn't want in populations with specific genes that I shared provides an extra bit of motivation on some days. I already exercised, but progress in health isn't binary, it's about frequency and repeated effort. Miss a significant percentage less workouts over a few years and the $99 on genetic testing easily pays for itself.

There have been people with schizophrenia on both sides of my family; my dad was schizophrenic. I really wanted to know if I have any genes that indicate an increased risk of schizophrenia.

I signed up for 23andme on the first DNA Day sale and signed my parents up on the second or third one. They didn't have a lot about schizophrenia in their health data early on but added a few markers later. I don't have any of them (but my dad didn't either, so there's probably something missing from the picture). When my dad passed away a few years ago from pancreatic cancer, I wanted to know about that, too. Early detection is the only thing that can help with pancreatic cancer. Again, no markers for increased risk (and again, my dad didn't have any significant risk markers either, the science is still very new).

But, for me, part of the value lies in the original science they're doing. Even if they don't have useful answers for me today, I would do the questionnaires and such in hopes that it'd help somebody else later. Genetic prediction of diseases can be hugely valuable.

Sure, there's a lot of things that the standard advice works for. But, schizophrenia? Sometimes, by the time it is diagnosable the person is difficult to reach with treatment. Maybe knowing it's potentially looming will make them more likely to seek treatment at the first signs of trouble, rather than after the point where it is difficult to determine what's real. Likewise, pancreatic cancer...there are tests for it (not good ones, but if they know what they're looking for, they might catch it early), but they're not part of a normal checkup. But, if you know you've got family members who had it and have the genetic markers for it, maybe you pay for, and deal with the invasiveness, of the extra tests every year or two, in hopes that if you do get it you'll catch it early enough to have a hope of surviving more than a year.

"I really wanted to know if I have any genes that indicate an increased risk of schizophrenia."

So does everyone else. Unfortunately, the best science out there is insufficient to give you an answer. If 23andMe were doing that, they would have deserved to have their wings clipped. Merely reporting the markers would be irresponsible -- there are hundreds! Interpreting those markers is, at best, an unclear process.

The GGP comment is ironic, because the problems they are complaining about (weirdly precise ancestry claims) are exactly what happened with much of what 23andMe used to report -- exaggeration of weak statistical signals. Ancestry is something more understandable to laypeople than relative risk factors for rare diseases, so folks can more easily understand the absurdity of the claims.

Sure, it's early. I know it and knew it when I signed up. I was not shocked to find out that the markers they'd identified as being associated with schizophrenia aren't a complete picture or a way to detect schizophrenia. And, I also know that genes aren't the only thing that determines whether one will suffer from schizophrenia or pancreatic cancer or most other diseases (as far as we know). I think they always presented the information without being misleading (though the government disagreed).

But, I also know that genetic markers for some diseases are a real thing and they are useful predictors of disease in some cases. And, the number of markers that have predictive applications are increasing all the time, as research gets done.

I don't expect 23andme to replace a doctor or a psychologist. But, I took a little bit of comfort in seeing that the markers that are thought to be predictive (even if mildly so) aren't present in my genes. I don't think they ever presented them as being a way to diagnose any condition. It was always just a fun thing you can do with your own genetic data, and maybe help move research in the field forward by answering questionnaires now and then.

I enjoyed playing with 23andme when it was focused on health-related data, less so now that it's focused on ancestry. I haven't logged in for well over a year.

I mean, I was amused to debunk my family's native American myth (which I think many American families have, for some reason), and I was also able to rule out my theory that the broad noses and dark skin that run in my family came from black folks somewhere in the family tree (that surprised me, I actually expected we had some African lineage, despite no one ever mentioning it...I assumed that's why some old folks in the family claimed native ancestry, to explain away those features). So, I guess the ancestry thing is reasonably amusing, too, but I probably wouldn't have signed up just for that, since I've always known I'm an American mutt of poor white trash lineage.

"I was not shocked to find out that the markers they'd identified as being associated with schizophrenia aren't a complete picture or a way to detect schizophrenia. And, I also know that genes aren't the only thing that determines whether one will suffer from schizophrenia or pancreatic cancer or most other diseases (as far as we know). I think they always presented the information without being misleading (though the government disagreed)."

They were completely misleading (at least, the reports I saw were misleading). Most of the stuff they reported was taken wildly out of context -- if it weren't, a lay audience couldn't possibly understand it!

But even ignoring the fact that you don't know the field (and therefore cannot possibly evaluate their claims, aside from general skepticism), a big part of the reason that you shouldn't be doing your own genetic analysis is that a lot of science is crap. Even "good" science is crap. So it's not that the markers "aren't a complete picture" -- it's that they're probably just noise, and you can't possibly know, unless the test passes all of the hurdles to get certified. You need the system, because the system is the only thing that validates results over time. Strength through redundancy.

Also, for whatever it's worth: be very careful with correlating anything to their ancestry calculations. Those are pretty much crap, too.

The APOe4 (https://www.snpedia.com/index.php/APOE) gene's connection to Alzheimer's is one of the most well-studied. Roughly, if I recall correctly, one allele doubles your risk and both multiplies it even further. There's some evidence (probably weak, but still) that exercise limits that risk https://well.blogs.nytimes.com/2014/07/02/can-exercise-reduc...

Now, you could say "everyone should exercise", and maybe so. But any tangible evidence for the long-term benefits helps. Sure, there's general evidence of benefits, but in my (limited, dated) exposure to the literature, general exercise research is not necessarily compelling enough, especially given the difficulties in pulling out correlations between exercisers and other associated activities or traits.

I find exercise boring, and I'm definitely looking to minimize exercise necessary to maximize its benefits.

By the way, the genetic research on predisposition to side effects to drugs and such is also extremely compelling. It's sad that the medical world is still so far from even trying to do precision medicine.

As the article pointed out, 23andMe's original business model of selling genetic testing kit to consumers didn't fly after FDA's mandate of banning them and they only gain 10 related gene testing approval since 2015. So they pivoted. As the article pointed out again, I still think they have some very interesting ways to generating more revenues like making drugs(a far stretch) or gene related disease analysis (fertility, breast cancer, etc.)

Reminds me of this (very much NSFW) Chapelle skit: http://www.dailymotion.com/video/x3a3f0f

So many of the identitarians believe in eugenics, and then find out much of their current racial makeup comes from Africa: https://www.theatlantic.com/science/archive/2017/08/white-na...

I can't say I mind the schadenfreude. Bigots of all types should be educated.

What does that even mean? Everybody's ancestors come from Africa.

TL;DNR: It means white racists got really upset when they found out this fact that they were part African per their DNA. I laughed a lot when this made the news.

> if I was a carrier for a serious genetic disease, I definitely would want access to that information

I'd much rather get that information from an MD who is at least bound by HIPPA regulations, than by a VC funded internet startup.

Is anyone able to providing a notable source on 23andme and their position on HIPAA regulations?

Do you have a specific question? Their position is that they follow the law where it applies to them.

23andMe isn't a HIPAA covered entity, and HIPAA regulations don't apply to then at all.

I would much rather get it done anonymously through a VC funded startup than through an MD who is going to unambiguously tie it to my person, log it into an "approved" and "secure" storage and may be required to report it based on some currently unknown set of conditions ("do you have a predisposition to X? let us alert the right folks so they can check you out, just for your own benefit")

I understand that with personal genetics you are unlikely to stay anonymous against a determined effort, but ATM I personally trust my government "trying to do good" less than I trust a random stranger who wants to make a predictable profit for his business. Just my 2c.

So a VC funded startup is not "a random stranger", but doctors are the government?

Doctors are not government, but they are bound by a variety of government regulations (e.g., parent referenced HIPAA). I do trust my own physician, but he still has to report on me in certain cases or he will lose his license.

For big, uncertain queries I initiate I would rather find the answer privately and then decide how public do I want this info to be. Otherwise I am afraid that my options will be curtailed: "did both of your parents have heart problems? sorry, we cannot take you on that climbing trip", etc.

I was under the impression that 23andMe doesn't allow you to anonymously submit a genetic profile.

Some people submit their DNA but switch up their gender so as to theoretically nullify the results for a potential future data breach. (Insurance providers being one concern here.)

Does anyone know if/how 23andme addresses this, or do they care?

That... seems like literally the easiest thing to correct based on a genetic sample.

Switching the gender would be an ill-advised way to be anonymous. Its easily determined from the raw data itself, based on the presence of Y-chromosome SNPs. I have heard that some people prefer to use fake names, emails, prepaid credit cards, and use a PO box or some other mailing relay to mask their home address.

I'm not sure if 23andMe cares about anonymous users, but they might care about survey results being faked in a large number of users, because that would affect their scientific mission of finding interesting patterns.

They do indeed care.

My brother and I submitted a sample from my dying mother, which they were unable to process properly. We were offered a replacement kit, but at that point our mother had already passed away. When I conveyed this to 23andme, they refunded our kit cost and removed our mother's pending profile from my 23andme account.

From their email:

"Unfortunately it is not possible for us to unregister a kit after an initial sample fails analysis. Replacement kits are automatically registered to the individual the original kit was registered to, and they retain personal registration information including name, birthdate, and legal consent to our Terms of Service and research document.

If we allow someone else to use the replacement kit, the sample would not be associated with their personal information. Additionally that person would not agree to our Terms of Service and provide legal consent for us to process their sample. For privacy and legal reasons, a replacement kit cannot be used by another individual."

I think this is a different circumstance however. It sounds like the issue here was primarily based on obtaining proper consent from the individual being tested, which isn't the same as anonymity.

Check this out though. It seems as if their official stance is they do want your real name, but permit pseudonyms when conversing online. Interesting.

https://customercare.23andme.com/hc/en-us/articles/202907890...

> It seems as if their official stance is they do want your real name

Its because they're selling the data to pharma companies. They have a vested interest in the data being accurate.

https://www.google.com/search?q=23andme+sell+data

If you have to submit a payment you aren't anonymous.

I completely agree with your distrust of a random startup, but I encourage you to exercise more caution about your MD. Not that he may have bad intentions but because most of them aren't really computer geeks and your personal information is quite likely to end up on a lost USB stick or out in the wild because of a bad shared password.

I grew up in a family of doctors, and I heard things like them considering to sue google because a patient managed to find his medical record by googling his name. They are scientists, very educated people, but that doesn't mean they understand all technologies.

> but I suspect that they are also bending to market demand for meaningless information like how 1 or 2 of your 64 great-great-great-great-grandparents happened to share some genetics with a bunch of people from the Asian steppes.

What if some people really want to know this? My family is from the Caribbean, I will never be able to trace back my family history as deep as others because my ancestors were slaves, 23andme seems like a great service. Especially in a time with so much racial animosity in the US, maybe if people had a deeper look at where they come from they would have sympathy for others.

That's surprisingly a thoughtful observation that I never would have considered since I don't have that problem. I feel kind of bad for disregarding my carribean girlfriend's results now.

We're talking about $200,000,000 here. There's no space in the room for sentimental value with a round like that. It's got to be brutally practical and be able to scale.

oh of course. If I understand correctly, the FDA has already approved them to provide genetic testing for 10 diseases. That is the big sell they are going for. They have plenty of data from the sentimental folks like me to play with.

Yup, I agree. My mom was adopted so I can't trace anything on one side of my family. That's why I did the ancestry test. She met her biological parents before they died, but has little info about family history.

I run a nonprofit project that gives more of the advanced data back to 23andMe users. I try my best to avoid the ethical/legal grey areas by not giving any kind of disease predictions, and instead provide a search service that links your genome to academic papers. These citations and references are what I miss the most from 23andMe's old reports.

Would love feedback! https://www.infino.me/genetics

It looks interesting. Would be great if you had the option to upload raw 23andme data rather than just connecting to the account, as some people probably have concerns with giving up their identity along with the information.

I haven't considered that would be an issue. Great point! I plan to eventually build a parser for Ancestry.com, which lacks an API but has a similar raw format to 23andMe. When that gets done I'll lump them together.

^ Agreed with above -- when I've discussed this with my more privacy-minded friends they always raise a concern about their data getting into the hands of insurance companies down the road, and having their premiums affected. Data security would be something I'd think quite a bit about, but I like the sound of what you're offering.

These issues certainly keep me awake at night. I'm really glad that we have laws like GINA that protect us from having our medical insurance change due to genetic testing. I hope that congress preserves these protections, and further applies them to other forms of insurance (like life insurance).

This nonprofit of mine was born out of a lifetime of dealing with a rather serious medical issue. With full genome sequencing, I was able to finally diagnose myself as having a rather severe mitochondrial disorder. I've been worried that knowledge of the mutation would affect my medical care, but I finally reminded myself that the mutation was already making me quite ill to begin with! The biochemical concerns are now much more worrisome than the hypothetical insurance or discrimination concerns. I've grown relieved in the realization that finally knowing whats up will likely do more good than bad.

A big problem with your site is it links to stuff as if its significant/important/real. Nearly every single variant I followed through on was basically bogus. An intronic variant with like 50% of the population having it.... Literally doesn't matter how many GWAS studies have associated that with a greater risk of breast cancer. The risk difference by definition is nothing. Its meaningless to state clearly on your site "breast cancer". You might want to avoid ethical/legal grey areas. But who is your site aimed at? It has none of the information a scientist would want, or a clinician would want... But does have misleading absolutist linking of variants with papers and diseases?

My site is aimed at people who want to dig deep into the literature. I don't say any of it is significant or real. I say "here's a paper that thinks it's real. Go read it". I can certainly do better to qualify things more clearly.

I've been working in genetics for some time and what I have noticed is that all of these markers start as an unjustified signal in GWAS studies with no biological proof. Eventually however, some clever biologists eventually figures out the role of that gene in model organisms, and the locus becomes more confidently verified. Many of the markers for obesity, for example, have been thoroughly vetted now as being significant and having a well explained role in physiology. They show up in the brain centers that regulate metabolism.

My mission for that project is to provide links/searches into the literature for educational reasons, so that I can inspire people to pursue careers in science and figure out what the unknown genes actually do.

Just because a single SNP variant has a high penetrance in the population and a low overall risk doesn't mean that the gene itself isn't extremely important. Genotype arrays like 23andMe only test a small fraction of the genome. What we are finding is that many of these common variants are co-inherited with rare variants that are the actual sites of functional importance for a trait. So just because a SNP on a genotype array has a low risk, the gene can still be profoundly relevant.

I'm also disappointed. I can only recommend downloading your raw data and purchasing a report from Promethease. All the data is there, you just need another service to provide it.

Agree, I expected more from them by now. I mean, I know they had trouble with FDA and it's fun to learn how many Neanderthal genes I have, and there's a bunch of interesting info they delivered, but for 6+ years I am on their site, I expected more. Maybe more useful info beyond entertainment. E.g. they say I am predisposed to weigh above average. OK, why don't you give me some useful personalized advice? What they have is "eat well and exercise". Duh, I could read it anywhere. Maybe indeed it's a consequence of FDA meddling?

This might be useful for people yearning for the good old days.

http://slatestarcodex.com/2014/11/12/how-to-use-23andme-irre...

I accidentally discovered my biological family using 23andme.

My wife took the test for fun, and I thought it would fun also. Being adopted, I never cared to look up my biological family. I'm 52, so I assumed they were all gone by now.

Within five minutes of getting my results back I was in touch with a first cousin. A couple of days later? Three bio half-sisters, who live in my area.

This was quite a shock! I went from taking a test on a lark to having a bunch of new bio relatives.

I'm fine with it now, but at the time it was quite a bit to get used to. I'm still sorting through where to go from here. Try to find a bio father? (Nobody knows who he might be), or just leave things alone?

One conclusion I have reached: all of this adoption stuff, which used to be extremely secret in some areas, is coming to come out over the next few decades. Being an adult, I'm fine with however my biological history plays out, but I imagine there are a lot of kids and teenagers that could really have a huge suprise in store for them. Strange times we live in. (And thanks to the 23andme folks for giving me an adventure I hadn't asked for but is turning out to be quite fun and interesting)

If it's not too personal of a question, would you mind expanding a bit on what you're thinking with regards to whether or not to seek out your bio father?

As someone who wasn't adopted, I'm very curious as to what your gut is telling you to do on this. I have had three friends in my life who were adopted, two in their teen years sought to seek out their biological parents, and one says he never thought much of it.

I never wanted to do it. Like I said, I just kind of fell into it.

But now that I'm here, I feel an obligation to complete the biological history for my kids and potential grandkids. Things like heart disease, cancer, and other diseases can be part hereditary. There's also the issue of establishing a genetic family tree. That's never been my thing, but some of my progeny might feel differently. Now is the time to find out whatever information is available, while people are still alive.

On the minus side, this kind of thing could be terribly disruptive to a family somewhere -- and I have no intention of causing anybody pain.

As I said in my OC, what changes the balance is the fact that as sites like 23andme grow, it's all coming out in the wash anyway. So the real question is whether or not I'm going to fit all the pieces of the puzzle together or leave it to somebody decades from now when I'm gone. Since I'm halfway there, might as well finish. In this way I can create a family narrative of my adoption instead of having that narrative created for me by people years from now that I've never met.

It has absolutley nothing to do with meeting the actual person, or going through some kind of emotional reunion. I really don't want to do that. It's much more about putting all the pieces together and making some kind of sense of it all.

For whatever it's worth from the other side of the equation, an older biological half-brother who had been adopted got in touch with my family a few years ago, and it's been a profound experience. I knew that he was out there somewhere, but never really thought of him or had any real desire to meet him until he reached out (I was already in my late 30s). We don't live in the same city but close enough that we've been able to hang out 1-2 times per year. Snooping on each other's social media before first meeting lowered the initial awkwardness.

I have a couple of friends who have had similar experiences. Getting to know a close bio-relative as an adult surprised me in how much it offered better self-understanding and an enriched perspective on nature/nurture and the human experience. It was interesting right off the bat to discover improbable similarities in favourite books, albums, and thoughts about John Resig's blog posts, that he had a similar career path to me, and shared some mannerisms and personality quirks, and to realize afterwards how naturally the conversation flowed. Maybe we've also been lucky to not load expectations on each other. After our first meeting he made a comment on how every software developer secretly wishes they had a clone of themselves out there doing the stuff they don't have time to, which summed up my feelings pretty well.

Obviously it's a personal decision, but I've been very happy that he made contact. In terms of potentially causing pain, if 3 of your bio-siblings are on 23andme, it's highly likely that they are at least already aware of your existence and are just as respectful of your boundaries as you are of theirs.

I was a "secret baby", that is, nobody knew that my bio mom was even pregnant.

Decades after I was born, one of my bio sisters was talking to a family member while they were drinking. They let it slip that they all had a brother somewhere out there.

None of the other siblings believed her! (I take it that she was quite a bit of a prankster growing up) So when I finally turned up a month or two ago, she was quite excited! See! I told you guys we had a brother!

In all honesty, it's been much more emotional than I would have ever guessed a year or two ago. There are tons of similarities between me and my bio sisters that are odd. I imagine the same would hold true for any (?) siblings I have from my bio dad.

Frankly it's been so emotional that I've had to take things just a little bit at a time. Way too much for me to handle all at once.

Thanks for unpacking that a bit for me. Best of luck putting the genetic pieces together, it sounds interesting!

The modern approach to adoption is "open" - we keep in touch with my kid's bio-mom on Facebook!

Yes! Much better. I have friends who have had an open adoption. They speak highly of it.

How does this actually work? I assume your first cousin and half-sisters that came up in the screening also performed the test. Do you automatically agree that 23andme can use your data to search for relatives and give them out your information?

My first cousin did the test a while ago. When she took the test, she agreed to share her results with anybody that might be interested.

After I took the test, I was guided through a series of prompts and opt-ins that asked me about what I was comfortable sharing. At one point, there was a checkbox to allow my information to be used as part of something (I think) called a DNA Family Finder.

I checked that, then there was a section of the website to go to. On that page there was 50-60 people who had already taken the test and agreed to be part of the search. Most were crazy, far-removed relatives like 4th cousin twice-removed. But at the top was a possible first cousin.

To be honest, even when I saw it I didn't do the math. On her side, she received an email that said she had new matches, then messaged me through the site. "I guess you've hit the jackpot!" she said

Of course, by being first cousins, it meant we shared grandparents. It also meant that one of her aunts or uncles was one of my biological parents. We chatted for a bit, my telling her I really didn't want to cause any family pain and her reassuring me that it was a long, long time ago (1960s). As it turned out, one of her aunts was a "black sheep" of the family and had gotten into all sorts of social trouble. The other aunts and uncles weren't in an easy place to have had kids. (Insert detective story here)

If 23andMe is eventually acquired/reaped, what is the worst thing the new owner can do with the data?

to ensure long-term stewardship of the data, a company that holds genetic info should be a non-profit owned by the DNA providers, along the lines of a mutual insurance company.

Sell it to an insurance company, who in the future may be able to discriminate against you due to your genetic characteristics.

Sharing fundamental characteristics of yourself with random cloud service providers is probably one of the dumbest things I can think of.

If insurance companies are able to take advantage of genetic information, won't they just pay people to gather it?

Like, for $500 someone could follow you around for several days waiting for the 1 lapse where you leak a little DNA into the public environment.

Or you know, they will just discriminate against people that refuse to share their DNA. The narrow wedge where they are forbidden from requiring DNA but free to discriminate based upon it is still a pretty fucked up world.

It's not really plausible that they would hire people to secretly gather it from you. Maybe they just make it a requirement for getting the insurance at all, that seems cleaner and more scalable.

> who in the future may be able to discriminate against you due to your genetic characteristics.

Look, I know it's fashionable to disavow discrimination in all its forms and for all its reasons, but businesses built on evaluating risk, like insurance companies, NEED to discriminate.

It's impossible to price and discount risk without access to accurate information.

I'd be FAR FAR more worried about governments misusing my genetic data than insurance companies using it to determine an accurate risk profile.

The insurance company can price risk at the population level, there is no need for it to be able to price it individually.

This can be "less fair" to the lower risk members of the population, but the other side of that is whether the insurance company is actually capable of doing the individual pricing in a fair way, or if it is just being presumptuous.

The problem is adverse selection. If insurance buyers have information that insurance sellers aren't allowed to have or act on, high risk people will buy, while low-risk people won't. As losses go up, so will the price and when the price goes so high that only the highest risk people will buy, the market will collapse.

Giving insurance companies more information simply reduces the scope of what they will insure. Highly predictable risk (I will be dead before I turn 150) is not really insurable. Unpredictable risk (I will be struck by lightning) is. Genetic screening just moves some unpredictables to the predictable column.

Is it fair? No clue. If it turns out that there's a genetic predisposition to being struck by lightning that modern genetic testing uncovers, then all those "struck by lightning" policies will die - they were subsidizing the highly conductive to the detriment of the non-conductive. Hope you're not highly conductive!

TIL using statistical data to make actuarial data more accurate (e.g., insurance) is discrimination.

Yup.

"Oh, you're of African background and have sickle-cell anemia. Your sore throat isn't covered as your spleen dysfunction is a preexisting condition."

I dunno, I think it's pretty trivial to back into life expectancy and genetic risk factors from publicly available ancestry information combined with death certificates. We have ~200 years of pretty good records here in the US and many more if you go into Europe's records. From that data you can get a really good idea of longevity for a given person.

Ancestry.com even has a public tool for doing this at a high level: https://www.ancestry.com/name-origin?surname=trujillo

Seems the cats been out of the bag for a long time.

Maybe you shouldn't throw around 'dumb' quite so liberally.

They're already discriminating. It's a large part of their job. I much rather they do it accurately than inaccurately.

I think I will request my data be deleted. I have the raw data archived anyway, and run it through Promethease.

Good luck. There will always be a copy somewhere. That's why I would never use a service like this.

The benefits trump the risk for me.

I hope you also considered the risk for / asked all the people related to you before handing over significant parts of their DNA as well.

Sell it to insurance companies, schools, employers, or the government who will grant and deny access and determine cost to you and your descendants inside or outside the law.

Business and politics is becoming more and more about using analytics to manipulate you and your fellow citizens. Your genetic makeup along with other data about you could be combined into optimal targeted campaigns tailored to just you to get you to behave in line with somebody else's goals. Knowledge about you correlates with ability to control you.

There's a law against this. The anti genetic discrimination law passed by Bush 2.

Sure, and employers aren't legally allowed to discriminate based on criminal record unrelated to the job, but that has never stopped them.

I think they are allowed to discriminate based on felony convictions etc... at least in the states.

A blanket policy of excluding all felons without a legitimate business justification may violate Title VII of The Civil Rights Act of 1964 due to disparate impact.

https://en.wikipedia.org/wiki/Employment_discrimination_agai...

Can you get around the law by phrasing a question to 23andMe. A health insurance company could call them up and ask if so and so have genes that has an increased risk of contacting x disease ? Technically they are not selling the information so they are not breaking any laws but it's still valuable to the insurance company.

Laws come and go. Your data stays.

GINA law already prevents insurance companies from acting on this data.

It seems unlikely that this sort of genetic data is really a risk. To test that, I had my genome sequenced and published it with a reasonable license. Anybody is free to download my data.

How would you know if that data was used in a decision?

Great question. Ultimately, I can't know for certain, but I can make some reasonable guesses.

I think GINA only prevents health insurance. Life insurance would probably be interested in genetic indicators of early mortality.

I've put my raw data on GitHub in case anyone wants to see what it looks like or make a PR. This is the V3 chip (V5 is the current), but the formats should be the same.

https://github.com/blopker/DNA

so, uh, if I send you a pull request, do you CRISPR it into your genome?

I'm just waiting on Travis CI integration.

They could clone customers... I guess it could be a good thing in some cases, if they don't modify the data.

I am sure Facebook would love to connect that data to theirs. Now you have full surveillance: behavior, face recognition and genetics.

I read this last year and it is scary

https://www.washingtonpost.com/news/worldviews/wp/2016/09/14...

It is never a good idea for a single (for profit) entity to have that much data on anyone.

Not the worst thing, but they could make it possible for distant family members to locate you based on DNA similarity. This isn't always desirable.

Sell to law enforcement to find relatives of suspects.

Why would anyone willingly hand over their DNA to a third party like this?*

23andME HAS handed your most personal data over to the authorities.

*(Same reason people willingly install wiretaps in their houses aka Alexa and Google Home)

cf. billions of Facebook users.

I bought a kit and then never used it because of all the detailed info they required in order to create a profile and the risk you reference. Wasted $$, but still feel like I dodged a bullet by not submitting. Could have created a fake profile and lied on questions, but that didn't seem like a good enough protection. It wouldn't be too hard for a nefarious party to link the results back to me.

Tim Ferriss once posted a guide on how to stay 100% anonymous (included tricking the parcel shop staff etc).

I haven't been able to find it. Can you post a link?

I leave my DNA all over the place.

Yes, but nobody knows it's yours.

It's super easy to find out whose is whose. To get hacked this way all you'd have to do is leave the house.

Similar to the different concerns between mass surveillance and targeted surveillance

It's easy to link a database and profile millions of people. It's much higher effort for them to come and get my DNA.

And they likely don't have to get your specific DNA. Just have to find a single willing relative.

What "authorities" have been handed this information? And what would they do with this information that makes it so bad?

Authorities === police, and other government agencies.

What could they do with this information that makes it so bad? Well, they could do something like familial searching, which seeks to identify the last name of potential suspects through a DNA analysis focusing on the Y chromosome. And a "promising" match from someone who donated their genetic info, could lead to your wrongful arrest... Don't think it could happen, try it already has

http://www.theadvocate.com/new_orleans/news/article_1b3a3f96...

Well that is unsettling. In the article you linked it sounds like Ancestry.com was responsible for working with the police. 23andMe seems to have a better track record on privacy and claims to have resisted requests from law enforcement so far. But I agree that it's not ideal that law enforcement can even make these requests. People should be able to check their genetic health and not have to worry about being wrongfully placed at a crime scene.

https://blog.23andme.com/23andme-and-you/23andprivacy-your-d...

> 23andME HAS handed your most personal data over to the authorities.

Now just wait for some strange shift in power. I hope I do not wake up in ten years, leave my house and am welcomed by the authorities (maybe the Evocops), because my subpar DNA didn't pass some unit test.

So if there are genetic roundups, why wouldn't they be accompanied by compulsory testing?

It's pretty much the same story with milder stuff like insurance. If companies can make money by offering discounts for people with genes they like, the insurance company not having your DNA isn't going to make your insurance any cheaper. Or employment, enough people will share their DNA that it becomes a necessary step towards getting the job.

The consequences all flow from allowing society to become hell, not from sharing the DNA.

>> So if there are genetic roundups, why wouldn't they be accompanied by compulsory testing?

Because one requires instating mass testing while another requires just gaining permission to an existing treasure trove, albiet a subset.

If the Evocops have a bug fix for my lower back pain, my principles would crumble fast.

for some people: health fear > privacy fear. Wait until you get a little older, and things start going wrong with your body, you'll start doing all sort of crazy stuff that you wouldn't think about in your twenties, like stop drinking beer.

I use Google for email, I have an Amazon Echo, and I'm thinking about trying 23andMe. The best case scenario is that I get utility or enjoyment out of these things. The worst case scenario is... what? What would you say the likely outcome is? Do you think I will regret having an Echo one day?

It'll just be widespread NSA style surveillance.

That's a good point. I've been under this type of surveillance for quite a while now and as far as I know, there haven't been any negative consequences for me.

Most contrarians here quote nightmare/slippery slope scenarios as to why you don't want it, but in reality, you're more likely to be negatively affected by slipping in the shower.

I doubt most of the people intentionally avoiding Alexas and 23andMe also have shower pads that help prevent slipping. This is why I think most of this anxiety comes down to some combination of neo- & techno-phobia, like we saw with GMO crops.

> Do you think I will regret having an Echo one day?

Certainly some people have. A court case recently had Amazon turn over Echo recordings.

Similarly, your DNA could be used to place you in relation to a crime scene whether you committed that crime or not. I certainly don't want someone I bumped into earlier to have my DNA on them when their body is found if my DNA is trivially searchable. I'd much rather have them need to go through me and my lawyer before any of that is possible.

The likelihood of either of those scenarios is pretty tiny. The value of DNA sequencing and virtual assistants is real and substantial.

I don't like the better-safe-than-sorry argument when it comes to security. I think it leads to bad policy and bad decisions. I've been thinking about this after I read a story[1] about a family that has been told that they cannot let their young kids ride a city bus by themselves. It's a similar argument - the value of kids gaining independence is big and the risk of something atrocious happening is tiny.

[1]:https://www.thestar.com/news/canada/2017/09/06/a-dad-in-bc-l...

It's not "better-safe-than-sorry", but a simple cost-benefit analysis of the risks and stakes presented.

Depends on your lifestyle and how valuable you think these things are, but I find these things almost entirely valueless. I think virtual assistants are basically total trash - I can type my query on my damn phone faster and more accurately than the Echo or Google can get it - and I just see no value in DNA sequencing unless you're looking for a specific medical condition, the fluffy interest in stuff like racial makeup just seems like a shitty trade-off to me.

A bad policy can be undone, publishing data can not. So I understand people want to play it safe more so on the later one.

Also keep in mind that with DNA you are not just making the decision for yourself. Your relatives share significant parts of your DNA, thus the potential risks will affect your brothers kids /etc as well. Consider asking their opinion / getting their consent.

> the potential risks

I'm willing to tolerate a pretty high level of risk. I either drive my car or ride my bicycle to work 5 days a week. I've gone scuba diving before. I rode a motorcycle for 30 years (I just sold it). I occasionally eat fast food. Crazy, right?

For 23andMe, do you know of some ways that people have actually been harmed by their test results? I wonder what percentage of their customers regret signing up?

23andMe became a joke after their stupid handling of the FDA situation that resulted in them being nothing more than a glorified dna-based ancestory.com

Wait until 23andMe has their next sale and get the kit for $99 to have your DNA sequenced, then spend 5 bucks to get a _real_ dna-based medical profile from Promethease.

That's only US, though. You get health reports if you do it in the UK.

Anyone tried proxying in to see if US users can get health reports via UK IP address?

They have your address from sending your kit to you, I have to imagine it's based on that.

In Austria, I can't get any health related reports (yet?).

Yes, you don't get very many tho, and they actually removed most of them around a month ago! It's basically pointless for UK customers too now

What do you mean? My 23andme profile shows carrier status and genetic health risk reports. Is there something else that was removed?

The genetic health risk reports were exactly the thing that the FDA snagged them on. If they had one previously, it was not... FDA-approved.

https://blog.23andme.com/health-traits/learn-23andmes-new-ge...

They reinstated health reports in the past year.

I used 23andMe, and was a happy customer, but asked them to delete my data after -- I wasn't comfortable with them keeping that information (on a long enough timescale, everyone is hacked... or there may be regulatory issues with health insurance one day etc.)

I do wonder if they really deleted my data though?

Would pay 10x what 23andMe asks for a similar service if they gave you only an offline copy of your data, didn't store it on their servers, but also an offline app to analyze your results. There are some open source solutions[0] out there but they're not as user friendly yet.

[0] https://github.com/mentatpsi/OSGenome, https://www.snpedia.com

What you need, is a home kit that allows you to do it all yourself (a dumb kit so that the data stay safe with you)

I don't know, lab tests in a hospital go off to be analyzed somewhere. I think there's a healthy middle ground between "do it all yourself" and "let's store the results on a server connected to the internet indefinitely."

I agree that an affordable SNP chip you could use at home would be amazing though.

Or a kit that isn't attached to your real identity (fairly easy to do with 23andMe, they don't require ID verification).

If your family members attach theirs to their real identities, they might be able to figure out which one is yours.

Wow so much pessimism in this thread! I love 23and me and bought it for my girlfriend and parents too, they also loved it!

This comment would be worth more if you explain why you love 23and me.

Haha ok, sorry my comment wasn't valuable to you.

I like that I found out I'm 5% Asian and .1% Mongolian - it's a fun parlor trick to tell my friends I'm PROBABLY RELATED TO GENGHIS KHAN

My girlfriend is descended from many different cultures. She really liked seeing to some degree what percentages she was. Yes, we know it's not super accurate, but it gave her an idea.

We compared results on some of the tests, like proclivity to be addicted to caffeine, which were surprisingly accurate.

I wanted to know more about my ancestry so I had my parents get tested. I think it's really valuable to not only validate my genetic data, but also to see if it matches up with theirs/if they can provide more detail. I also have a hope that my future descendants will benefit from having this information on file (yes tinfoil hat peeps, it does also mean that the Trumpborg will be able to target them).

Hope that helps!

I think there's a selection effect where the people who think it is an issue are more motivated to post.

Tru story.

If you want the original information offered by reports... Get your genome sequenced and download it, then go to

https://www.snpedia.com

and look up genes your interested in.

or use promethease.com which does that for $5

Excellent! Can't wait to find 100s more "3rd to 5th cousins" :D

Just FYI, you can export your 23andme data and upload it to Promethease who will then cross-reference it with findings in SNPedia. Kind of fun :-)

I really hope all of you who got your DNA sequenced did not give your real names; insurance companies will eventually get a hold of this data and use it against you.

In the US, that would be illegal under GINA[1].

1: https://www.genome.gov/10002328/genetic-discrimination-fact-...

While I appreciate you pointing this out, there's nothing to re-assure this will remain in place with a few more years of administrations like the current one.

As a 45yo man who recently discovered via 23andMe that my dad wasn't my biological father, let me state that the ready availability of cheap DNA testing that has suddenly happened over the past few years is going to have some interesting effects on our social structure. I shudder to think about its impact in countries where familial lineage is a really big deal.

Just 10 years ago, it took a real effort to do this sort of thing, but now you can have your entire DNA history - and potential familial connections - within weeks. And, as with anything that relies on network effects, each additional 'node' in the graph increases it's value in proportion to the square of the number of connected users of the system: Meaning that finding lost/unknown relatives will become easier and easier.

What's amusing is how the major services - 23andMe, Ancestry.com, MyHeritage.com - avoid suggesting that you are 'half' related to anyone. After discovering my history, I joined the other sites and was confused when MyHeritage discovered someone that it had a 'high confidence' was my first cousin, because we shared a relatively high 11.6% DNA. It turns out she was my half-niece. This possibility wasn't listed anywhere on their site.

Have you joined 23andMe? You know that person that shares some of your DNA and is potentially your 2nd-4th cousin? They might actually be a half-relative instead, but these services are avoiding that designation for obvious commercial reasons. The problem, I think, is that this is actually a lot more common than it seems, and they are really misleading their customers.

Anyways, if you have a suspicion (as I had) that you might be the 'black sheep' in your family for reasons other than the genetic lottery, it's easier than ever to confirm your suspicions, and that will definitely affect lives for real.

> I shudder to think about its impact in countries where familial lineage is a really big deal.

I empathize with individuals who experience hardship from this, but I find it difficult to oppose the inevitable long-term effect, which is to make familial lineage less of a big deal. To me, that seems like a really good thing.

If anyone's wondering what you can use 23andMe data for longer term day-day you might want to sign up for news from the company I work for ;) https://www.genetrainer.com/

23andMe is pretty useful. It flagged my maximum-possible risk for Celiac, which after a few months weaving through the Canadian medical system was confirmed by diagnoses. Best $200 I ever spent. That said, the other data on ancestry and obvious things like my eye colour wasn't very useful. For more useful speculative genetics, try plugging your 23andMe data into this: https://promethease.com/

Are they still using microarrays? Curious how far those can get you these days. Enough to detect common SNPs, but there's such a wide variety of other important genomic regulators that require whole genome sequencing to detect.

I guess they know what they are doing though, I was just curious if they have extended their technology. Good that the FDA at least prevented those pseudoscientific predictions and they focus on research now.

If they aren't offering Whole Exome Sequencing at this point, they're no longer a leader; they are far behind the industry.

What companies offer this, and what is the cost?

You can get your 23andme data imputed by DNA.land to approximate the results

Full Genomes Corporation will do a 30x coverage full genome for $1150; I'm a customer and purchased mine back when it was $1850. They sequence through Novogene in China. They also gave me my BAM files and raw FASTQ reads (~300gb of data). I have not found anyone else who will do that.

https://www.fullgenomes.com/

Interesting! Can you recommend this company? Do they also provide kits to sample the DNA?

Yes, I do recommend them, and yes, they provide you the sampling kit. In my interactions with them they went beyond what I expected of them every time.

https://genos.co/sequencing.html

Presents such an interesting case for privacy. Down the rode if we can make changes to our genetic code will it really matter?

How come can't they raise more than this with all the precious information that they collect?

I've heard that this company copyrights your DNA in case it has some useful attribute.

    [citation needed]

All of that money and work just so people can say "yep, I might die in a few years because I have X". Wouldn't it be better to put $200mil into curing the illnesses rather than putting a product on the market to scare people into treatment they may or may not need?

Well planning appropriately for genetic issues would seem to have some value attached wouldn't it? Unexpected medical costs can have a huge impact on a person's finances.

This sounds like it runs contrary to the commonly held belief that it would be much cheaper on a macro level for people to consume more expensive, less shitty (i.e., all starch, salt, and sugar) food than for us to exist in our current global heart disease and diabetes epidemic.

Preventative measures are supposed to be the way to go, from what I've heard. Spending money on telling people how to eat correctly obviously goes against corporate interest, so it doesn't usually happen.

$200M usually isn't enough for even one drug - $500M is on the low end, and not all drug development works out. So it's plausible that the money is better allocated here than in treatments.

But also, from the article: "Based on some of 23andMe’s newer hires, we wouldn’t be shocked to see the company dive into drug development, either."

The real goal is to build a database of genotypic and phenotypic data and use that to identify drug targets. In other words, curing the illnesses.

Prevention, or early intervention, is often less expensive and less painful than curing. Cures are also not always 100% and can be in the form of recurring treatments.

Simple example is heart disease -- the cost of prevention is far lower than the cost of treatment.

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