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Is there a way I can get this kind of analysis done and retain control of all the data that gets created? I have been interested in learning details about my ge
by thrtythreeforty 3y ago
Is there a way I can get this kind of analysis done and retain control of all the data that gets created? I have been interested in learning details about my genotype for a while, but not at the expense of having 23andMe keep a copy for whatever purpose they desire now or in the future.
- akiselev 3y agoTalk to your doctor. Genetic tests ordered via your physician may be covered by patient privacy laws in ways that 23andme customers aren’t. Read the fine print though because you get what you pay for.
- hackernewds 3y agoyou will not get the richness of detail that 23andme provides though, since the results are mostly based off training data from other submissions to 23andme. Which is why it gets better over time; I was shown to be 20% Chinese, but now 4 years later my profile there reads that I'm completely Korean
- brigandish 3y agoKnowing your geographical ancestry - which, to me, seems slightly ridiculous, versus knowing some genetic predisposition for disease or problems like the one discussed above with caffeine or, say, ibuprofen, don't seem to be comparable in the slightest.
- mtlmtlmtlmtl 3y agoTheir ancestry data is known to be quite dubious. They're really just guessing for the most part.
- alfiedotwtf 3y ago> I was shown to be 20% Chinese, but now 4 years later my profile there reads that I'm completely Korean > you will not get the richness of detail that 23andme provides though That richness you describe almost seems to be fabricated "vanity metrics" rather than anything useful
- carbocation 3y agoI work in human genetics and largely wonder the same thing. Short of sequencing your own genome, I'm not enthusiastic about most privacy policies. To add context, I also am involved in public large-scale genetic studies (as a participant who has provided genetic data) such as All Of Us. There, I have no misapprehension that people will be studying my data. I'm just saying that on the commercial side of things, I haven't found a satisfying consumer-facing way to pay for sequencing as a service (where I'm not trying to sequence at scale) without any strings attached.
- kqr 3y agoThe easiest test I can think of given GPs description is to take your blood pressure, abstain from coffee for a week (?) and then take a new blood pressure. It's not an RCT so it won't be definitive, but it may suggest to you whether further investigation is likely to pay off. (Unless, of course, other confounders affect blood pressure unrelated to this effect. But for me personally, my blood pressure is usually fairly constant, at least compared to a 20 mmHg drop.
- caskstrength 3y ago> The easiest test I can think of given GPs description is to take your blood pressure, abstain from coffee for a week (?) and then take a new blood pressure. That entirely depends on how strong the caffeine dependency of OP is. For someone like me it would be anything but "easy" for first 2-3 days at least due to withdrawal symptoms (headache, poor concentration, tiredness).
- DennisP 3y agoSeveral months ago I saw a study claiming that decaf coffee prevents withdrawal symptoms, even if you know it's decaf. I was getting headaches pre-coffee in the morning, and tried it, and it worked so well I quit caffeinated coffee without any trouble. Just felt a little slow and sleepy the first week. https://www.sydney.edu.au/news-opinion/news/2023/02/14/decaf-kills-coffee-withdrawal-symptoms.html https://www.sydney.edu.au/news-opinion/news/2023/02/14/decaf...
- caskstrength 3y agoThe article you linked says it _reduced_, not _prevented_ the symptoms in people who knew it was a decaf.
- DennisP 3y agoSorry, I misspoke, and that's my experience. I still had slight symptoms, but they were reduced by at least 90%. I'd found it pretty difficult to quit coffee before, but switching to decaf was effortless.
- Gatsky 3y agoYes, find a local sequencing provider and arrange to do a SNP chip or whole genome sequencing. In the contract ask that they delete your data after delivering it to you. This will be: 1. Expensive - probably at least 2 - 3 thousand dollars. 2. Require you to do your own analysis. Obviously you can't be 100% sure they will delete your genomic data, but they have no incentive to keep it.
- Gud 3y agoDon’t they have every incentive to keep it?
- Gatsky 3y agoSuch as? I’ve worked in genomics labs, they would be quite happy to delete stuff.
- eimrine 3y agoWhy to delete anything sellable? I always do all kinds of illegal copies of somebody's PD on all places I ever worked as employee. Typically by stealing some papers from garbage because photographing takes too much time per one 'drop'. With enough wit of choosing workplaces I use to have some incomes from my strategy.
- snapcaster 3y agoJesus christ dude don't admit to crimes on a public forum
- DANmode 3y agoAny chance you're making a joke/point about someone else?
- Gud 3y agostudy it, sell it? Sadly, it seems privacy has gone out of fashion. I am happy to hear the genomics labs you've worked in would be happy to delete it.
- mfld 3y agoRelated question: I have my genome but I find that the reports on polygenetic scores that you receive from [popular consumer WGS sequencing provider] are lacking accuracy. Is there a platform/ community of personal genetics enthusiast that crowdsources such analysis?
- sathackr 3y agoI haven't done a DNA test before, but I assume the identity verification is lax at best. Would it be practical to just generate a "burner" persona to attach your test to? Yes your data technically will exist, but will be effectively anonymized
- aantix 3y agoI think Nebula makes the promise of anonymizing your data and permanently deleting it once the retention period has expired. https://nebula.org/whole-genome-sequencing-dna-test/ https://nebula.org/whole-genome-sequencing-dna-test/