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> Patient privacy is a huge concern for us and something we think about all the time. Quite simply, we will never share any of our users' data without explicit
by all2 7y ago
> Patient privacy is a huge concern for us and something we think about all the time. Quite simply, we will never share any of our users' data without explicit consent and we are more than happy to both delete our users' data and destroy their sample if requested.
This should be the default rather than a user-requested option. I would consider auto-deleting user data (ensuring privacy for anyone's data outside some window of time) to be akin to auto-opt-in organ donation: most people don't know or care enough to change the default and will go with whatever is on the form (which is why organ donation is 99ish% of some populations in Europe and drastically lower than that in the United States - we should ignore the moral implications of choosing for people and focus on the outcomes of choosing a 'sane' default action). If you want an iron-clad guarantee sequences will never fall into the hands of bad actors (anyone who has delusions of genocide, for example) deletion/destruction is the way to go; perhaps even two or three passes of bit-by-bit overwrite.
Consider a future where such sequences will allow bad actors to engineer viruses against family units, regions of peoples, and so on.
- astroH 7y agoI think that's a really good point. In fact, for many lab tests where the results are completely "cut-and-dry", this suggestion totally makes sense. For us, one thing we consider is that the diagnostic yield for these types of sequencing tests is only ~40%-50% in the best case. We know from the literature that if we perform a reanalysis 6 months-1 year, the chances that we find something in patients that don't have a result increases quite substantially as does how we interpret known variants. Thus, continual reanalysis is very important to many of the patients that we work with. Unfortunately, it's too expensive to resequence every time we need to run such a reanalysis algorithm.
- est31 7y ago> it's too expensive to resequence every time we need to run such a reanalysis algorithm. You can also send hard disks to customers with the exome on them and ask them to either send them to you for a, idk 20 USD reanalysis that you recommend doing every year, or you can even have it done on the customer's computers themselves with a program that you provide that downloads the latest database of variants from the internet and then performs the analysis completely off-line without sending any info on which disease chances the patient has to you.
- astroH 7y agoBoth good suggestions. The hard-drive idea is totally doable and something we have considered. In terms of the analysis, it's not quite a program that you can run on your own computer. You can rank variants this way but you need a trained bioinformatician to interpret them which is why it has to be done on our side.
- rkagerer 7y agoI'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.
- astroH 7y agoI think this is really well put and something that we haven't considered (letting users download their data and then re-upload later). As long as we could ensure the data hasn't changed it could work. Unfortunately, we can't do anonymous testing because it is physician-ordered. I should say that some of this identifiable information is super important for the analysis.
- astroH 7y agoJust to elaborate on this, by analysis I mean understanding which mutation in the genome is pathogenic.
- est31 7y agoAlso that way the data are safe if the company gets acquired by someone like 23andme or pivots away from this path themselves. The statement that they care about privacy is really great, but it's harder to actually live it. Anyways, wishing them lots of luck in building a company that actually respects privacy and doesn't just claim it.
- astroH 7y agoThanks for the comment and we totally agree. The only way to prove we care about privacy is to live it and be as transparent as possible.