I'm annoyed at the presumption that I, as a customer, was not aware or on-board with what 23andMe is doing. I did. I'm happy to be part of this. I don't care that someone is making money because of it. I'm just glad that biomedical research to save lives is happening. Why is it a bad thing?
And as a side benefit, through this system I got to meet my second cousin and tell her what my mother remembers about her now-passed-on grandmother (that literally happened last night and I'm still excited about it).
I am a bit nervous about some of the 'we found the criminal by searching the company's DNA database' stuff. I think some regulation around that is needed. And perhaps 23andMe needs to make it more obvious to customers that they will do this research using the DNA.
But as an informed consumer, I was happy to become a customer and participant in this fascinating system.
What we haven't figured out, is how consent should work with the rest of your family, who share most of your DNA. Obviously your body is yours to give consent for, but you effectively dox your whole bloodline in doing so.
I don't think there are easy answers here, but it's a conversation we should be having.
How come this is a complete non-concern in other areas?
If you give anyone (say, PayPal) your address, you’ve given then your roommates’ address as well - since you share the same IP. Nobody cares, even though the third party can immediately begin identifying your roommates without harvesting their DNA, like they would in the case of 23andme.
If we call that doxxing, isn't that the same as an identical twin who commits a crime being held liable for defamation of the twin who shares their face?
Edit:
Or, by the same token: a parent is liable for diluting the value of their siblings DNA because they passed that DNA on to children. I don't see this going anywhere.
Not exactly, no. These are weak analogies. The second one doesn't make any sense to me at all. Maybe I'm missing something.
It's like sharing your private key, knowing that others also use that private key.
You immediately make a large portion of your family tree discoverable.
It's the same underlying reason that we (most of us lol) treat revenge porn as a bad thing. You take someone else's blanket of privacy away without their consent.
We also routinely take photos and post them. Caption them even. It’s not just on Facebook. And you routinely consent to your image being used when you attend events. Which can identify you were at a place at a specific time.
people are very quick to try to say things are really bad and describe it as doxing, but let's be clear: you drop your DNA everywhere all the time, there's no way you can prevent that. Your DNA is not private in any sense of the word.
The trouble I see with this is that you may have exposed your relatives to T&C's they didn't agree to. Perhaps some future situation where a sibling gets to pay higher insurance rates or similar.
Cool, I'm glad that brought you joy. I wish they gave both of us a check box at the bottom of my spit test to opt in and everyone's happy. But they know at least half of their population would've opted out...
23andMe provides checkboxes for everything you could want to change. Even better than checkboxes on a paper form, these are consents you can give / retract at any time:
You can go to the settings and opt out of their Research consent document now, which also explains how the data is used. I think they 've been pretty clear about how they plan to use the data of existing customers.
There is also the danger of people having a false sense of privacy by opting out of 1 or 2 genetic tests. This is shared information between relatives and the population at large, not exactly top secret data. The degrees of separation between you and me are 2-3 , so it s very easy to identify people indirectly , hence why it was possible to solve decades-old crimes.
I think our genetic information is less private than the contents of our brains, in general.
Would you like to have your DNA being used to manufacture a virus that only kills you/your family, based off DNA structure some 23andMe customer bought from them? Right now 23andMe might be the "good guys" like what Google used to be, but for how long?
There are cheaper ways to kill a whole family as any organised crime boss will be happy to tell. Also, I don't like google either, but jumping from google used to be good too to your DNA will aid bioterrorism is kind of a far jump. People wanting to manufacture a virus, and who have the means to do so, don't need 23andMe database.
But what if that person is constructing the virus to kill everyone else but spare the ones with the submitted DNA? would that be OK? How far should we take this?
It's strange how Anne Wojcicki's company has done more for science than Theranos ever did yet most have never heard of her. Even when you exclude the scandal Elizabeth Holmes got herself into, she was more well known.
>It's strange how Anne Wojcicki's [...] yet most have never heard of her.
It's not strange if you consider that Elizabeth Holmes proactively pursued the media appearances circuit. E.g. talk shows, award ceremonies, etc. Other female CEOs do more actual work and don't have the time for those distractions.
Also, Forbes' calculation of Holmes being worth ~4 billion based on 50% ownership of Theranos drew more media attention. The public fascination with (so-called) "billionaires" feeds the self-reinforcing cycle of more interviews.
The press is lazy and incurious. They don't pursue stories, they reprint press releases. And the even sadder part is they believe the press releases and report accordingly.
The press assures us they'd be better if we gave them a bunch of money (even begging for government money), but the truth is that it has always been like this.
I upvoted this, but it's not quite true. It's not wrong to say that the press has always incuriously reprinted the press releases of the powerful, but in days of yore there also used to be a thing called "investigative journalism", largely snuffed out now, thanks to the consolidation of media ownership. What that's done to the structure of newsrooms, the compensation offered therein, and hell, the whole mission of print media, is only obvious to those old enough to remember what local papers used to look like.
I am constantly baffled at the sweeping statements that get made about modern journalism.
In the "days of yore" the quality of journalism was higher? Journalists regularly omitted things from reporting that was widely known to support popular political narratives or their own ideas of what good outcomes would be, "for the good of the country".
Investigative journalism is alive and probably better than ever before despite being less profitable than wildly irresponsible opinion masquerading as journalism.
Look at the Pulizer Won by the Boston Globe for 2021, lifesaving investigative journalism that is expensive and difficult- and exactly the sort of thing that the Golden Age would have never dug up.
>Journalists regularly omitted things from reporting that was widely known to support popular political narratives or their own ideas of what good outcomes would be, "for the good of the country".
To paraphrase Mitch Hedburg, sure, they used to. They still do, but they used to, too. But now there are fewer of them.
>Investigative journalism is alive and probably better than ever before despite being less profitable than wildly irresponsible opinion masquerading as journalism.
This strikes me as kind of a crazy claim, but in the grandparent I was bemoaning the decline of functional local journalism. The rot hasn't really, truly hit big newspapers in big cities; the parent's citation of the continued existence of the Pulitzer Prize for Investigative Reporting kinda doesn't change the realities of the local news, the decline of which is evident, well-studied, and heralds corruption of both democracy and mere finance.[0][1][2]
I've linked blog-level readings, but feel free to scrutinize the links in the Global Anti-Corruption Blog article [0] for more academic analysis on the topic.
Look to groups like Alden Capital [3], which buy up and destroy small-town American news sources. You'll find that those disappearing local papers used to pen most of the original reporting in the US. It's so fucking evident that mainstream institutions like PBS and NPR and even Netflix recognize it -- namely, "The Patriot Act with Hasan Minhaj" [4] on exactly what I'm talking about.
I thank you for the reply and I don't dispute the deterioration of of local journalism and its negative effects. I thank you for the links and I will read them. (Some of this research I am familiar with is pretty iffy, the civic engagement -> local journalism link feels very compelling but the actual research is pretty thin, but it is a very hard area to study!)
I do dispute the notion expressed by the parent to my reply that there "used to be a thing called "investigative journalism", largely snuffed out now" which I stand by my position is a baffling statement. You can look at the homepage of ProPublica every day and read things that would never have any hope of seeing the light of day 15 or more years ago and are important stories.
And I really do think the fact remains that the ethical standards of the "days of yore" were garbage, modern reporters would break the shit out of news that the good ole boys would let go from the 50's all the way well into the 80's.
Outside NYC and Washington, DC, I'd argue that the rot has hit major cities, unless you can name a good US large-city daily outside the NYT, WaPo, and possibly WSJ.
LA Times might possibly qualify. Other than that, I'm stumped.
"News" and large facets of "journalism" have now, unfortunately, become nothing more than propoganda platforms filled with opinionated narratives to paint stories. Even when they're not, they often use selection bias to choose what they do and don't report on to tote some agenda.
Part of it is due to monetary incentives of businesses that now own the media outlets. Part of it is due to what the general public has interest in and will pay for.
Like pretty much all professions, it's also become far more demanding to be a good journalist or investigative journalist due to how many stories reported on require more specialized knowledge to understand and portray correctly. The bar used to be lower and a journalist could better grasp a situation or understanding. Now, with a lot of technology and science, you pretty much need a pretty deep and well rounded background to properly understand and address issues. The general bar of education has risen, including that of deceitful people, which places even higher demands on journalists to put them in check.
Could dig further into the point but the moral of the story is that the bar is raising to a point where misinformation and disinformation have an edge due to the sheer volume of information, lack of ability for any one person to have enough understanding, and incentives to be deceitful. That means the barrier to entry cost to dig out deceit has often become too high. I'm surprised we see much of any interesting investigative journalism anymore aside from uncovering some of the more obvious and massive schemes. Forget catching clever and sophisticated deceit, you need whistle-blowers for this.
I disagree. There is still investigative journalism and plenty of good news sources. They are imperfect but you get to know where they excel and where they don’t, plus perfect news sources have never existed in the history of history.
What happened instead is that the bottom fell out. There are so many newer sources of information today but most of them are very poor so the average quality of news has precipitously dropped. But as it always goes, the good stay good.
I currently pay about $40/month in news and magazines (but borrow Netflix/Hulu/HBO/etc. from friends, lol) and I enjoy the news I get. It’s a range of current events to policy analysis.
I think a bigger change is that previously what people thought of events didn’t honestly matter as much in day to day policy dealings either. People weren’t any more informed back then — they just didn’t even know what was going on, for better and worse.
> I'm surprised we see much of any interesting investigative journalism anymore aside from uncovering some of the more obvious and massive schemes. Forget catching clever and sophisticated deceit, you need whistle-blowers for this.
the problem is that folks like yourself want to sit back and have news come to you as a consumptive activity, and you expect it for free. you have to actively go out and seek valid sources of information -- you can't have your worldview shaped for you.
> Part of it is due to monetary incentives of businesses that now own the media outlets. Part of it is due to what the general public has interest in and will pay for.
This should be an entire discussion thread. Even scrupulous journalistic outlets have to stay competitive on the business side. And people don’t want facts, they want a story; something to spawn feeling instead of thought.
It was John Carreyrou at the WSJ who did so. The rest of the press printed all of Holmes' lies verbatim (and some retracted after the scandal came to light).
I feel like most technical people knew Theranos' claims were not real, similar to any fusion-type startup claims. Sure they may sound good but it takes extraordinary evidence to really prove. I can't figure out how most commercial partners and especially a major pharmacy chain fell for the fraud. Do they not have ongoing QA via statistics etc.? If they didn't monitor Theranos do they not monitor other providers either?
Theranos' big claim was they could do tests on a much smaller amount of blood. Perhaps they didn't end up doing that for Walgreens since they used externally sourced hardware, in which case they were just another test provider and if they tested out OK in ongoing QA, I don't see a problem with that from partner POV, but just from the investor POV who expected a new technology to get an edge over the competition.
IIRC they were using smaller than usual blood samples and feeding them into external testing hardware by watering down to required size. This sounds bad; but if it doesn't show up in QA - then maybe it's a legitimate advancement. If it makes testing less reliable and it doesn't show up in QA - then QA needs to be fixed. If it does show up in QA - Walgreens never should have agreed. If it does show up in QA but Walgreens never noticed - that is a problem to address.
I guess the initial deal was done on salesmanship and promises, so maybe they would have found out sooner or later.
I was already pretty suspcious of Theranos and then I talked to the VC I was advising. They said their alarms were tripped when Theranos didn't agree to sign any NDAs when talking about their tech, so the VC sent a junior partner to a walgreens to get the test. While being tested, they noticed it was a blood draw (the whole point of the test was that it didn't need to be a blood draw) and realized theranos was just farming out the tests to conventional equipment.
RThey were already "found out" well before the articles were published, it's just that most VC aren't going to go out of their way to tank you, they just decline to invest
And it’s not just because they don’t want to tank someone. It’s one thing to be deeply suspicious that something smells way off. It’s another to accuse a person or company of fraud with no hard evidence.
The podcasts "Bad Blood" (by Carreyrou) and "The Dropout" (about the currently ongoing trial against Holmes) cover these questions and more. I can highly recommend them.
But that’s why you need to pick the news sources that you consume, just like how you don’t eat at every restaurant that you see.
You could make a blanket statement like restaurant food isn’t very good, and on average that might be true, but anyone that knows what they’re doing would just laugh at that statement.
Only once there was blood in the water. If it hadn't been for one journalist in particular (Carryrou), the scam would probably still be a going concern.
> The press is lazy and incurious. They don't pursue stories, they reprint press releases. And the even sadder part is they believe the press releases and report accordingly.
Mostly true, and sad part if enough do that, then the rest follow.
Kinda also gets down to how many likes a press release gets upon social media and we all know how that is a rose-glassed slant of the full public opinion.
GP is saying that it's surprising for Elizabeth Holmes to be more famous than Anne Wojcicki. The fact that Anne Wojcicki is the younger sister of YouTube CEO Susan Wojcicki makes Anne's lack of fame even more surprising.
The fact that Anne Wojcicki is the younger sister of YouTube CEO Susan Wojcicki makes Anne's lack of fame even more surprising.
Close family member of Rich And Successful CEO founds successful company is not an interesting story. In fact it is how most people assume it works, if you come from a rich family of course your company is a success. 'Poor' kid pulls themselves up by their own bootstraps and builds company with nothing but grit and brilliance, now that is a story you can sell. Especially if it's a company doing something the 'experts' said couldn't be done.
Plenty of poor people people who pull themselves up don’t make the news like Holmes.
Undoubtedly Holmes was also good at marketing. That alone is a skill, one that alone admittedly doesn’t make a viable product, but that’s the real explanation for her success.
Anne Wojicicki was on prime time TV for a while (she had several appearances on Shark Tank). Although Elizabeth Holmes may be more famous now, pre-trial there was definitely a period of time when Wojcikcki was more famous. Keep in mind that Holmes was famous in SV/VC circles, not American popular mindshare.
it's funny how everybody thinks 23andme has some sort of grand plan. they had a grand plan. it didn't work out. now they provide a service that tells you who your relatives are and where you came from (genetically), which works well. But the health side of their product continues to be useless. Genomics continues to be one of the most oversold fields.
I totally agree that genomics has been oversold, and that companies like 23andMe did a lot of the over hyping, but I would also argue that most in the field knew it was being overhyped, and they didn't speak out or they were ignored. The public and scientific fascination and fixation with DNA in and of itself prevents a lot of people from looking critical at it and how it's actually useful. We attribute too much magic to it.
We are not at Gattaca levels of DNA predictions, not merely because of lack of tech development, but because the DNA doesn't actually tell us that. Given the weak clues that DNA actually gives about the individual, Gattaca is a cautionary tale about what happens when people believe too much in bad predictions, and enshrine bad models as a metric of social worth. Any society could fall prey to this, but today it seems more likely the bad models will be based on predictive modellijg from monitoring social media than from DNA.
Federal research programs also bit too hard on the promises as well, and invested heavily in genome-wide-association-studies (GWAS) to very little effect. I chose my HN username as these were getting deployed, much out of frustration with that direction of research. The clues, even early on into a massive spend, we're that GWAS wouldn't be terribly productive.
I think the biggest risk of being oversold right now are the "polygenic risk scores" being used for various quantitative traits, which fail to generalize very well. As more advanced machine learning techniques are used, we are likely to get even worse models. The curse of dimensionality makes the problem much more difficult than with traditional machine learning fields. Each case with a single label has millions of features, but we only get a very small number of cases relative to the number of features. And we are unlikely to be able to transform our feature space in ways that have worked well for, say, images by using spatial data. My personal hypothesis, by no means unique to me, is that we need to use the network of gene interactions as the feature transformation, but we don't yet have that network explored fully.
> I think the biggest risk of being oversold right now are the "polygenic risk scores" being used for various quantitative traits, which fail to generalize very well.
How do the hits from large scale GWAS fail to generalize within a population? Why would you get worse models with more advanced techniques, presumably the more advanced techniques would only be used instead of the simple ones if they are proven to work.
> How do the hits from large scale GWAS fail to generalize within a population?
Great question! I haven't revisited the question in quite some time, but one possible explanation is sometimes called the "winner's curse." There's a "measurement error" for each site in that genetics is never deterministic, and when you have millions of sites, and only thousands of cases split into yes/no categories. If a particular site explains only 10% of the "yes" cases, it could be that random sampling makes it look like 15% or 7% or whatever. And when you have a handful of sites, each with measurement error of this sort, when you sort the handful of sites, the genomic sites with the biggest effect are likely to come from random chance.
More advanced models have a greater ability to find spurious signals, to overfit the data, and to mispredict. Training with more parameters, correctly, often requires more data, and the biggest limitation to GWAS is the amount of data. For some rare conditions, there may not be bough humans alive to provide the data fully needed, if we are going only by GWAS. Because GWAS doesn't have any model for how cells work, and the naturally occurring variation in the human population is unlikely to provide enough data to reconstruct the relationships that are necessary to rebuild the parts of that physical model in order to make predictions from DNA alone.
There are also potentially different prevalence of causal variants in different populations, depending on the interactions between different genes. In the San Francisco East Bay, there's a mixing of many many previously geographically different human populations. Rare diseases that are most prevalent in one population are starting to present differently when there's admixture with more distantly related humans. The whole combination of minor differences can cause changes to what we think was a well-defined disease.
I don't know much about the services 23andme offers, but genetic testing is used extenstively and effectually by functional medicine practictioners every day, to do things like checking a patient's predisposition to certain illnesses, or to see if their body requires an unusually high or low amount of certain foods / nutrients, etc.
There are certainly quacks out there, but there are also folks with piles of credentials who describe what they do as functional medicine, who operate strictly according to the latest science, and who have massive beneficial impacts on the patients they see, many of which who have been failed by the mainstream medical establishment.
Descriptions like the above which seek to attack and discredit any form of alternative medicine will always exist because mainstream medical practice first seeks to enrich corporations and only secondarily tries to help patients. (Not on an individual level, but structurally.)
I'd invite you to check out the YouTube channels or any of the books written by Dr. Mark Hyman or Dr. Gundry; the content they put out is incredible and has had a huge positive impact on my life.
I don't think many medical scientists support any functional medicine practice. I have no doubt much of the medical industry is extremely corrupt, but I have a hard time believing nearly all medical scientists are working against peoples best interests.
The two people you mentioned seem to be regarded negatively by the scientific community.
Dr. Mark Hyman
> He was the editor-in-chief of, and is a contributing editor to, Alternative Therapies in Health and Medicine.
Looking at that journal it's definitely filled with crank nonsense.
And Dr. Gundry I assume is Steven Gundry, who is best known for false claims about lectins.
If you think those two are cranks, with their piles of credentials and active practices with tens of thousands of satisfied patients, who would you recommend I follow for health-related content instead?
yes, some genetic testing is useful. very little of it makes an actual impact on human health, compared to far larger contributions from other fields. It's just oversold.
Note: I have 25+ years experience in this field, I'm not just spewing out random beliefs.
You probably have much more knowledge than me then, but based on the reading I've done, we now basically know of certain genes that make people far more likely to get diseases like alzheimers or even to get a diagnosis of autism (genes which make the body unable to detoxify heavy metals) - it seems to me like that sort of information is probably instrumental in being able to fully understand and eventually cure or prevent these diseases, no?
It didnt work out or wasn't allowed to work out? I can upload my data to promethease to get health reports. I bet these would be a lot more useful if we had been freely allowed to exchange this data with each other.
Can you tell us more abuot your health reports? My full genome sequence (superior to any exome panel or SNP marker test) more or less said "you don't have any risk factors that we know of". WHich is about as non-actionable as it gets.
Apart from higher chance of "restless legs syndrome" and allergies to some drugs there was not a lot that was actionable indeed. Still i would like to have them and i dont see something wrong with having scientifically backed, objective information. This is from my 23andme data.
I have also got a full 30x sequencing from a bargain offer, but i haven't analyzed those. Never got to it, apart from downloading some app to browse them. Which stresses my point why the analysis that these services could provide is useful.
I feel the value in genomics is in the raw difficult science several levels of experimentation below the data. I fear that the biggest value for the present in much of the population scale genomics is in forensics rather than science.
Oversold as in "a genetic test will tell you how and when you will die"? True. But what we are doing today: telling people if they should take drug A, B or C, based on their mutations. Telling people if the fetus is affected by any of a pool of diseases. Pointing clinicians towards diagnostics (i.e. adding info, removing hypothesis...). Tracing diseases in genealogic trees and counselling future parents. Lots and lots of other goodies that were not available 10 years ago. And the best part is that there are much to come.
I think 23andme will truly have an impact once it starts doing full genome sequencing, because as of right now it just tests a very small subset of the whole genome.
You can tell a surprising amount about the genome from a subset of SNPs. Most germline variants occur in groups, so you only need to measure one position to know the values for that group. The variants that are chosen for the array based tests are carefully chosen to give you the most amount of information possible. If you’re interested in this, look up “genome imputation”.
For most of the tests that 23andme would want to run on a population, like risk assessment, you don’t get much more information from whole genome vs arrays. And the extra data (and noise) you get from whole genome can make association studies significantly more difficult.
Also with whole genomes, the extra cost in sequencing, storage, and processing time (all of which are significantly higher) wouldn’t be worth it from a cost/benefit point of view. Remember, most of the data is redundant or common between people, so full sequencing is really only beneficial in specific scenarios.
The issue with SNPs is that they are generally common in the population, and a variant that is common will rarely have a big effect. If we look at GWAS studies, most of them do not explain much of the variance of a phenotype. It either is due to environment/epigenetics or we are not using the right data. Part of it is of course the former, but I'm betting on the latter. I'm not a researcher, so I could of course be very wrong.
There is a difference in scale. For the research 23andme wants to do, they need to identify variants that occur in a significant part of the population (~1% or so). They need to do this because any potential drug/treatment would have to be developed for a big enough patient pool. Large population level genome studies like 1000 genomes and NIH All of Us studies are all aimed at finding those ~1% variants.
But if you’re looking for what is going on in an individual, then yes… SNP chip data isn’t as informative as whole genome (or exome) sequencing.
It still costs a lot to process and until it’s all aligned, you don’t know which parts are common. So, even if you have smaller long term storage, whole genome data still has significantly more costs to work with (at least an order of magnitude, if not two).
And you store more information than just the raw sequence (quality scores, multiple reads, etc).
Correct me if I'm wrong. The issue with SNPs is that they are common in the population, and hence they tend to have small effects, because if a variant is common and gives the carrier a big advantage, the variant will over time get absorbed by most of the population, and the same applies the opposite way. So the interesting variants are those that rare, because they are the ones that often cause genes to malfunction.
You second paragraph is wrong. SNPs are interesting because they exist in a significant part of the population.
But a new mutation never reported before can as dangerous as you want. A case we found: a woman already developed an illness in her adult life, lets supose it was renal failure. We suspected a genetic root, so we sequenced her exome, founding a never reported mutation that frameshifted a gene previously associated with renal failures. We quickly panel-sequenced her parents and children to check if they had the mutation, which none of them had. So the woman had a de novo mutation in heterozygosis that their little kids were lucky enough to avoid. Imagine the relief. Not useful? I disagree.
"The act bars the use of genetic information in health insurance and employment: it prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future, and it bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions."
How abstracted-away does it have to be? Say one of the credit agencies bought 23andme, and your genetic predispositions became just one factor in a new "life score".
Do we honestly believe the law would consider the whole score tainted and unusable for all the named purposes? Would it have teeth to do anything about it?
Furthermore, it's easy to end-run around it like they've done with car insurance. Instead of raising the rates of privacy-conscious drivers, we'll raise everyone's rates and then offer "discounts" to people willing to submit to tracking. There, perfectly legal!
Gain of function? You realize that mother nature is far more sophisticated than us humans. She has manufactured many plagues over the eons. we will likely never come up with viruses that have the kind of crazy cascading systemic building block chaos causing destruction in the human body. Radiation doesn't count because we just figured out we could harness it, but we have very little control over that. Viruses make ionic radiation look like child's play as just like ionizing radiation, studying the thing could kill you within days/weeks/months. You have a voodoo science belief that Dr Evil might create the next real zombie, only @9pm on Fox.
It's really funny how media coverage, combined with all the conspiracy-inducing effects of a global pandemic, have made the concept of "gain of function research" into something that is somehow combinable with 23andMe's database.
I haven't been following much of the media coverage of things like this, or the social media rumor mills, but a comment like that makes it clear that public perception is going way off kilter. And that mismatch between public perception and reality is exactly what fuels bad policy in governments.
Your lack of concern for gain-of-function research is not shared by experts in the field. They almost uniformly appreciate that that there is a risk of creating a pandemic that would be unlikely to arise naturally, and they take strong (but, imo, not nearly strong enough) safety steps to prevent it.
Nature generally didn't develop wheels or nukes either, but humans did and use them to great effect.
You don't have to halt science to decide that the benefits of gain-of-function research is not worth the risk. We don't test nuclear weapons anymore either.
Our knowledge of pathogens is not good enough. See the current pandemic. The question is whether the net benefit of this sort of research, once the risk are properly accounted for, is larger than the benefit we could get with alternative research methods.
The fact that someone else is taking huge risks of unleashing another pandemic is not a good reason for us to do so.
> If I have the world's health information, what could I do? And people were like, "Well, you could cure, you could save, you'd know a lot." The idea really was, well, we should do that.
> The idea really was, well, we should do that. Instead of relying on Stanford or Harvard or Pfizer to go and solve a disease or how to be healthy, we the people, we can do it.
When you use language like "we the people", users assume they'll be part of it. Not that Anne will be monetizing their data years later.
I also doubt many consumer read this interview or had any idea their data would be used this way. Maybe it's their fault for not reading the ToS carefully enough, but it's pretty hard for most people to really understand a ToS and also think about how the data could be used in the future.
Do you think most people would have an issue with their data being used in this way? I think only a very small minority of folks would -- and they're exactly the kind of person who would avoid this service from the get go.
In 2018 itself, 23andMe had a partnership with GSK
> As part of the collaboration, GSK can also change the way we invite patients into clinical trials. The genetic and disease information 23andMe customers share will allow us to identify the kind of patients who are most likely to respond well to new treatments so that 23andMe can invite customers who have consented to be contacted to participate in studies that are relevant to them. This could significantly shorten recruitment and reduce clinical development timelines, allowing some medicines to be delivered to patients faster.
They're probably in the news because quarterly results are released in two days. Their core product is facing a retracting market (partially) because of privacy concerns.
How do you know it's because of privacy concerns and not because they've exhausted the market of people who want to know about this kind of info? This is very much a one and done type of product -- in fact, the reason I myself haven't gone ahead and done it is because my parents and grandparents have already gotten it done, and I've looked over their results, so I'm assuming there's very little I could learn about myself from it.
So this isn't directly resultant from 23andMe but it's hard to overstate just what a revolution has happened in genetics in the last decade.
The specific subfield I'm talking about is genetic genealogy.
In the late 20th century, genetic testing was a revolution but it was a simple test. Given two samples X and Y it produced a boolean function:
f(x, y) -> { 1 if they match, 0 if they don't
This led to a number of convictions and exonerations. it has been a huge boon for both criminal prosecution and justice.
So what happened in the last decade is the development of a more sophisticated function:
f(x, y) -> [0, 1] showing how related they are
This most famously led to the identification of the Golden State Killer [1] and also helped identify victims of the Bear Brook murders [2].
In the space of 10 years this went from not existing to being a massive labour-intensive process to a trivial process. The use of this is now almost routine thanks to the likes of GEDmatch [3]
Beyond this, there's a whole bunch of ethical implications. Privacy covers things like what a DNA testing site can do with your data. This may potentially impact health insurance access in the like, particularly in the US (sadly).
But the really interesting part of this is that a person may be identified criminally or for insurance purposes without ever having uploaded a DNA sample through relatives who have. For example, if two cousins on both sides of your family have the recessive gene for Cystic Fibrosis, it increases the probability you do too (though simple Bayesian reasoning).
It's going to be interesting to see what comes of this because it's still early days.
That's what i signed up to many years ago. I liked their health reports. What's the reasoning for no longer allowing them to give us updated health reports? I don't personally care about my 6th cousins, i can barely keep up with the 2nd ones.
23andMe was insanely inaccurate for 100% of the predictions related to myself. I'm also concerned about what is known or suspected about my family. Especially, with how inaccurate the predictions are.
It's kind of weird to have this experience over and over again of being told I'm supposed to care about something that I find trivial.
Yeah, I assumed 23andMe would do stuff like this. I don't care. I'm not outraged. It doesn't bother me when people make money. And this doesn't strike me as a particularly surprising outcome.
I didn't know what this company does, so I've checked website, after usual banners galore, trying to cancel them all I am there.
The answer is short:
"Find out what your DNA says about you and your family." Then:
"- See how your DNA breaks out across 2000+ regions worldwide
- Discover DNA relatives from around the world
- Share reports with family and friends
- Learn how your DNA influences your facial features, taste, smell and other traits"
What is actual usage of this data? Education? Curiosity? To have something to be shared on Instagram? They don't mention predicting cancer risks, etc. at best this looks like some kind of hobby stuff, like building ones genealogy tree.
Or maybe the way to figure out if one is a true kids's father. Could have some interesting consequences.
Besides "Share reports with family and friends". Really, is this inevitable, does everything has to be shared with friends, even ones genome details? What next? Proctologist visit outcomes?
I don't even mention embarrassment of the "Customer Stories" section. "I feel very much at peace with my identity and who I am as a woman. I feel complete". I don't even want to guess if this is some marketing bullshit or someone really felt "complete" by checking genome...
People just don't realize that having their DNA hand over is a risk. A big risk. But I have to admit that company is at least very honest about this risk, which is good and rare, so that's a credit for them:
"In the event of a data breach it is possible that your data could be associated with your identity, which could be used against your interests."
That's nice way to say, if we are breached, well, we've told you.
They also admit that will give ones data to law enforcement. Something good to know too. Genetic material taken from crime scene is often polluted, incomplete, so one can go to prison on behalf of the real criminal.
Even if I was Dr Evil, with an evil medical degree from Evil University, I would think twice about starting my plan to capture the DNA of the public (mwahaha) by picking deliberately biohazardous samples.
why is that an issue? aren't villains known for their lack of care for their henchmen[1]? Also, apparently covid isn't really transmitted via physical contact[2], so operating such a lab probably isn't too dangerous. Finally, presumably there's PPE to protect against this sort of stuff, if you're not the type of villain that mistreats their henchmen.
Especially when you could just operate a chain of labs that run blood tests, and covertly sequence them on the side. Easier to scale, not reliant on something temporary like a pandemic, and probably has a more representative sample of the population than PCR tests.
And as a side benefit, through this system I got to meet my second cousin and tell her what my mother remembers about her now-passed-on grandmother (that literally happened last night and I'm still excited about it).
I am a bit nervous about some of the 'we found the criminal by searching the company's DNA database' stuff. I think some regulation around that is needed. And perhaps 23andMe needs to make it more obvious to customers that they will do this research using the DNA.
But as an informed consumer, I was happy to become a customer and participant in this fascinating system.