The other way, and where I suspect the bulk of the $300M/4yrs is going, is in recruiting patients for clinical trials. GSK can tell 23andMe that they need 150 patients living near metropolitan centers who have indicated they suffer from X disease, and don't have Y mutation. This could drastically reduce the cost of recruiting for Phase 2 trials (though it may skew the patient populations in ways we haven't really had to deal with before). <edit> If I remember correctly, 23andMe contacts these potential patients to ask if they're interested in the GSK trial, then refers them to contact the GSK clinical trial site. They don't just give your phone number to GSK </edit>
I guess I'm not really sure what the panic is about. First, every step is opt-in. Second, the data provided en masse is blinded to patient identity and industry standard is to disincentivize unblinding the data. Am I too close to and brainwashed by the industry to see what's wrong here?
The goal is to identify targets for new drugs, and it is known that drugs based on specific genes or mutations often have the best chance of success - look up, for example PCSK9 inhibitors. 23andMe, along with having genetic information, have very, very detailed phenotypic information on the people they sequence, which they collect in the form of surveys. This in turn lets them do GWAS-like analyses better than anyone else on earth. These GWAS hits can in turn go through a pipeline to find those genes which might confer protection, or susceptibility, to a particular disease. Then, it's up to GSK to make a molecule to mimic or inhibit that effect.
What should be clear here is that 23andMe is NOT giving GSK access to their data. They are giving them leads.
Source: work in research R&D in biopharma (with a particular interest in genetics)
23andmes database's best advantage is probably studying things like genetic basis of mild to moderate anxiety and depression as those diseases are probably more prevalent in their population than others. Plus those are complex polygenic traits so each individual gene would have a small effect size, so a big database like 23andmes would be useful
However that isn't great for drug discovery because drugs only hit one target. A bunch of genes with small effect sizes won't support much of a drug dev program
I may be wrong as I'm not familiar w 23andmes database but these are my deductions from what I do know
"If at any time you are no longer interested in participating in our Services, you may delete your 23andMe account and personal data, directly within your Account Settings."
I agree sort of, but how interesting is it that many people seem to really care when it’s their immutable genetic information to 23&Me - but when it’s their habitual and social information to Google or Facebook they seem care a lot less.
You should have assumed when you spit in the tube that you waived all rights to protecting your genetic data.
I'm not saying they should be allowed to use it however, including selling, but I'm saying when you spit in a tube and send your DNA to a company... you should kinda assume the worst.
"Blinded to patient identity" is true, but it can be relatively easy to re-identify these individuals using this data. So this data has your identity intertwined with potentially very private information. Some people intuitively desire to be as cautious as possible with their genetic information, and there is good reason for caution. Worst case it somehow ends up on the black market. You can't change your DNA, so if it gets out, there is no turning back.
As mentioned, 23andme uses genotyping not sequencing so it's unclear whether there data is that valuable for target discovery. and while it's not unprecedented for pharma to spend $300M for a target id deal, it is quite rare
I think your point still stands though, your genotype is still identifying information and should be safeguarded.
Their prices are low for the "consumer" (product). The $300 million GSK deal is an example of how they can make real money.
There's probably already some mad biohacker out there doing this as we speak and being called a loon by everyone who knows them.
Sequencing studies really don't show this.
Sequencing finds rare variants. GWAS finds loci with common variants. We know that for many common diseases, the population-level variability due to rare variants is small. If you want to find drug targets, there is plenty of reason to use both approaches.
23andMe ask you during sign up if you wish to take part of anonymized research. They ask you again for each person whose sample you submit. You can also opt out at any time.
The article author even knows this, since when they asked Ancestry (23AndMe's owner) that was exactly what they were told. So why does the article have such a hyperbolic tone and misleading information?
I don't have high expectations for Business Insider but this article still disappoints me. This is tabloid level "journalism."
I'm not sure I'd call them competitors. Yes they both take your spit and process it, yes they both allow you to see potential extended family but that's about the only similarities.
Ancestry added it as an extension of their genealogical services while 23andme was originally for personal medical discovery before the FDA came down on them and they had to change tactics.
While there are legitimate concerns, 23&Me is pretty good in terms of privacy practices and their founders/employees are working in good faith to improve the health of humans. It's kind of sad that gets twisted into "compabnies are profiting from your personal data", because while that is true, it's not nearly as invasive or gattaca as people seem to think.
But we all understand that technology is only going to make more information available from those samples over time. The board has a fiduciary responsibility to its shareholders, and it doesn't take a great imagination to see that if the information becomes valuable in new ways then there will be pressure to use it however they can.
What we have here is a baby step.
Ancestry is not 23andme’s owner. They are competitors.
You can submit a sample for someone else?
(I’m thinking about how police caught that serial killer recently because some of his relatives had used one of these sites)
The alleged killer was the DJ at my wedding. The trial's in May.
But also consider that ethnicity is relatively easy to get from genetic data. So individuals with unique ethnic combinations can be trivial to identify by their genetic data. Now consider that genetic data can also be used to predict traits such as height, hair color, eye color, etc .
Reliable triangulation is already possible, and becomes increasingly more accurate as more data becomes available.
0: E.g.this company- https://snapshot.parabon-nanolabs.com/
But you're underestimating that one of the big draws of 23andMe is their detailed ancestry analysis - which isn't going to be replicated overnight by a competitor - and their related social networking/genealogy aspects, which definitely isn't replicable overnight. I have zero interest in that but I still get contacted every couple of months on 23andMe by genealogy hobbyists looking for more information. (And they also have FDA-compliance on some of their health reports, which isn't easy either.)
Am I being too optimistic?
Also, at the time you could download an export of your genetic data and that is probably still the case.
It basically takes your genetic information and maps it to what is in SNPedia: https://snpedia.com/.
The problem with this approach is that what you are getting isn't really analysis, and you will get lots of conflicting data and information that is not possible to interpret without specialized knowledge. Still, it can be both fun and interesting.
It’s kind of labor intensive without automation. But, I’m sure someone has written a script to compare raw SNP data to SNP databases.
Things to keep in mind: 1) raw SNP data contains errors. 2) A particular SNP may be associated with condition X, but many other SNPs could be also be associated with X. And, rarely is it understood how they work together (since they’re often located in different genes). 3) a lot of SNP research is done using small samples, i.e. not much confidence. (A GWAS will produce more confidence, but also identify fewer SNPs of interest.)
So you can read the raw DNA sequence yourself but it is the link into thousands of pieces of academic research that is the real value delivered here. Without that it is just a bunch of letters that mean nothing.
I just don't know how well it can be enforced with businesses that don't have an office in EU land.
In the film, discrimination by genetics is, strictly speaking, against the law, but a matter of course because of how easy it is to get a sample and sequence someone. Humans are judged based on what's in their genes, not who they are.
The synthetic, designed humans are classified as "valid", while those born naturally are "invalids" or "de-gene-erates".
It would be quite easy for people of all walks of life to become second-class citizens due to information in their genomes if things do not change quickly.
Having the information collected into a central location (the insurance companies) would make it easier for a large number of these requests to be filed, rather than needing to track down individual services for each investigation.
Similarly the blood pressure data in my withings app or activity data in my Fitbit app is not covered by HIPAA.
Fool me once.
This is how it works in other areas, like car insurance; with an absence of data, your policy is roughly based on the average individual, but as you gain more years of driving experience (good or bad), they factor that in. Bad drivers who get in more accidents pay more because their behavior is riskier and costs more. (the big difference being, in this case, genetic risk is predetermined and not something you can easily change through behaviur modification).
It really needs to be covered by the government, like police and fire. Universal health coverage makes sense as a public good. It doesn't really make sense as an insurance product.
Regarding the statement in the article about anonymization, you are correct. These data are not anonymized, your name is just removed from the file. This does not truly anonymize the data, for reasons you outlined.
Interesting quote from Linda Avey, the co-founder of 23andMe: “It’s a fallacy to think that genomic data can be fully anonymized”. I disagree, and think that eventually we will be able to anonymize your genome in a test-tube, so that the data is secure before it ever touches a computer.
So now, tomorrow, or into the far future the two piece of information cannot be re-associated because there's nothing to map them. The information about the link is lost.
It is like asking "Can a lossy MP3 be restored to the lossless version if technology improves enough?" Nope. The information is simply gone. Same is true here, the associated link is just gone.
The entire discussion is predicated on 23AndMe or Ancestry
* not pivoting their business model and selling the unanonymized data to the highest bidder.
* not being forced to reveal the unanonymized data to the authorities.
* not revealing unanonymized data to hackers
DNA can be used to uncover your last name and ethnicity, estimate your height, hair color, eye color and more, so anonymization is not as simple as removing a name.
It cannot be used to uncover your last name without sampling from several generational family members (and for them to be de-anonymised). Simply having a range of heights, hair color, eye color, is not enough to identify a unique individual.
The mechanism you're claiming could exist seems to be based on already having de-anonymised sequenced DNA for most of the population. But if you had that you could infer someone's DNA profile without having to actually sequence (or more to the point, de-anonymised it) making the entire activity pointless.
Essentially your entire argument is: If we already have your sequenced DNA (or could easily infer it) then de-anonymising you is easy. Which is both true but completely pointless.
While your gut feeling is likely correct, they could implement a system has reduced benefits for people deemed to costly to support. Or prioritize treatment of critical problems and not count preexisting conditions as critical.
It is much more likely that everyone would be covered in the same exact way in my opinion though.
Best that people can do in the future will be to make the tools as cheap and accessible as possible so we wont have major genetic data monopolies acting as a walled garden that they can reap the benifts from the most... though they’ll be the head honchos in town for awhile until then.
The second is long term exposure to the unknown. Even if you knowingly choose to opt-in, what if that data is used against said persons at some point in the future for something they failed to consider, maybe because they couldn't know because it's not been identified as of yet?
Profit isn't always the detractor. I get that these organizations need to make money. But without proper explanation (there should be a better legal framework in place for services like this that offer equal protections to both sides) and a potentially biased legal agreement, informed users will likely question the unknown of giving up information to a company who will continually be realizing ways to use your DNA for the foreseeable future. And, oh by the way, you paid them to do that.
Sure these are extremes but if this information is available, eventually it will be used and most likely first for for profit.
Government is 1 of the largest buyers of marketing data as well. They cant do the spying legally but nothing stops them from purchasing what corporations do.
Why are people surprised they would abuse your data for profit?
Which is the funny bit given GSKs takeover.