I see the ANALYSIS you provide does not use my DNA but I'm unclear- are you collecting my DNA? Are you saving it or storing it, in any form, in either physical or digital form? What assurances do I have that any of the labs or other partners you use won't do this either?
I'm interested in more detail on your privacy policy, and reading any contractual language on this subject in your Terms of Use (or whatever other fine print forms the agreement between you and your customers).
I stay far away from services like 23andMe because of their user-hostile terms (at least that's the impression I got when I last scrutinized them a few years ago).
To me the ideal DNA test would be one I process myself at home, without sending anything to the cloud. I recognize that's not viable since most of us lack home laboratories.
Next best option would be one where the sample is submitted anonymously and results accessible under a system-generated ID code. That would alleviate some of the risk if you or your partners screw up in terms of privacy and security (it's naive to ignore that possibility - look at how many Fortune 500's have been breached or suffered human error).
A user could "opt in" to share identifying information (ideally only to the extent they're comfortable - e.g. I might be willing to submit coarse data like racial background, age, etc. while withholding my name and address).
In all cases I would still expect to see very strong, binding language in both your agreements with me, and those with the labs you subcontract out to, assuring that my data will be kept confidential and all traces deleted (including from all backups!) when I request.
Regarding re-sequencing and long-term storage for privacy concerned users: give me the option to download the raw data (compressed and encrypted?) and delete it from your platform. I can re-submit to you in a few years for an updated analysis. That avoids the cost of re-sequencing while, for privacy-conscious users like me, minimizes the window in which you storing my data could cause me harm.
We do not sell your DNA and do not have future plans to do so, in fact we don't currently store your personal genome information, and would inform you if this were to change. We will ask for consent before doing any analysis on your personal DNA, if we were to expand studies to include human genomic markers.
So many tin foil hats. Just don't give them your real details when signing up and sending the sample?
I did mine because it was a cheap way to get my DNA in a file. You can then run it against https://promethease.com/ or http://dna.land or whatever other tool you like.
I would really like to get my DNA analised. Mostly to see what deseases I might be prone to get. Obviously 23andMe cannot be trusted. Is there a more privacy focused provider? Ideally who just gives me the result and then deletes my data?
I try not to use offensive language on HN, but are you fucking kidding me? You actually expect a single company out there to not keep your personal information? The type of system you are looking for will never exist. Ever. The only reason a company wants your DNA to begin with is either to profit from its data, or to perform crowd-sourced research that requires keeping your information indefinitely. Your comment goes far and beyond a fantasy. There will never be anything positive to gain from having your DNA analyzed. Corporate, hospital, "non-profit"... there is no such thing as a secure outlet from whom to obtain your DNA profile. There will always be a record, even if it's "erased" but still recoverable from the raw disk. Either you don't understand how corporations and modern government work, or you are insanely naive about the possible benefits from DNA analysis compared to the politicians and corporate psychopaths who will find a way to benefit from it.
If you're willing to hand over your biological fingerprints to anybody, you may as well walk into your local police station and admit to a murder you haven't committed. Even if 99.99% of people submitting their DNA for analysis never see any negative consequences, the other 0.01% are going to have their lives ruined because of some supposed family association to a criminal. These days, suspicion is equal to guilt beyond a doubt. If one out a million people are falsely chased down based on something like DNA, that is one person too many.
The possibility that you have some horrible abnormality that can be detected via DNA testing is so astronomically low. Stop thinking about the interesting science behind what you can learn about your body. Instead, be very concerned about the fact that there are people out there interested in nothing other than having power over others. Nobody should be submitting themselves to this horrendous risk.
I cannot imagine how someone would even consider submitting themselves to such a process. I took a season pass to my local amusement park; they strongly suggest you provide your thumbprint instead of taking a photo for your ID. It's insane. Obviously the police or state government can force this park with hundreds of thousands of fingerprints to submit to database searches. Who the hell offers to provide their fingerprints to an amusement park, in order to save the 5 minutes of inconvenience required to go have your photo taken? "Stupid sheep" is the only phrase that comes to mind.
Granted, it's not much, but I did this under an assumed name and declined to allow them to keep the sample. I think it's good that the DNA is being used for science, I just hope I can keep some privacy from it.
"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent."
And...
"Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliva samples and DNA are destroyed after the laboratory completes its work, unless the laboratory's legal and regulatory requirements require it to maintain physical samples."
I will be waiting until I can analyze my DNA myself, without handing it over to a company that is going to do whatever it wants to with it. We are not yet able to fully appreciate how valuable DNA is, and yet everyone seems delighted to pay companies to take it from them.
Perhaps they will be less delighted when they are convicted of a crime based off of a false positive, have their DNA shared with Facebook to Improve Their User Experience ™, or have their DNA made public after yet another security breach where it is left on an unsecured server.
Remember that your DNA is very valuable, literally. Those who have noticed recent progress in genomics should realize how valuable it would be to a competent advertising company, allowing them to profile and predict users with significantly higher personal accuracy, even if all they are doing is performing basic GWASs (https://en.wikipedia.org/wiki/Genome-wide_association_study).
I suppose I'd be more interested if you could buy the kit from a supermarket, and each kit had a unique code and password you could enter online to check for your results. So once the sample is posted, the only thing that connects it to me (without a probably unfeasible amount of detective work) would be my IP address. (And my DNA, obviously...)
I want to sequence my DNA and get the results. But i do not want a company to keep a copy of it. Even if it assures me it will not share it, sell it or it will keep the data "anonymized". I want them to sequence it, give it and delete it. After all I'm paying for it.
Extra points if i can be sure of it, like doing it at home, which I suspect we are still far away from that.
In a far off future, where enough DNA data is publicly (!) available, that may be the case. Until then, to which data set should any company compare my DNA to find out who I am?
Consider that there are a significant number of people who don't know they have more relatives than the ones they know and love. If the information is public, it becomes an avenue for blackmailing.
Scams about relatives already happen without DNA [1].
Depending on what state in which you live your insurance coverage or cost might change too. [2]
There's also significant risk that your DNA will be sequenced in one jurisdiction but, because of The Cloud, it gets analyzed and stored in another jurisdiction. For example, the EU and US have very different privacy laws.
Some DNA analysis software employ stochastic algorithms. That means that the answer they provide can be different if run more than once, especially if run with different parameters (such as sample pool). [3] [4] Some customers know this and will ask for their data to be reanalyzed.
Some companies make the DNA available to be downloaded by the customer. That file can then be used for your own analysis or research. It could also be uploaded to other companies for different analyses or conclusions.
I don't think it's unreasonable to assume that your grandmother, who uploaded her DNA to a foreign company for a new or different analysis, has given a foreign adversary private information about you and your potential medical hazards or secret relationships.
In general, you don't upload your DNA to provide it to everyone else to match with; you upload it to a broker who seeks to connect you with other relevant people who have provided their DNA according to site policy. And you certainly don't upload it for other users to download it willy-nilly after a match.
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