So obviously we’re all on Lemmy for a complicated combination of reasons, but we all likely share some common ground, namely…
- need for privacy
- need to own/control/access the data we produce
- healthy skepticism about the trustworthiness of for-profit corporations, in general
So if we don’t want meta to know even innocuous things; like how many times/when we message our grandma, and we don’t google to know when we’re searching for remedies to a rash, and we don’t want reddit to… Well we just don’t want reddit - we don’t want them to profit from or weaponize that data against us in a myriad ways.
We also don’t want them artificially removing features and creating tiered layers of service/value hidden behind a paywall (I understand this is very present in the some of the commercially available DNA services).
So that brings me to DNA testing services. Since they started to emerge in the mainstream they were immediately an interesting, exciting novelty and I also knew it was data I wouldn’t feel safe trusting with a for-profit org - with broken systems like law enforcement and health insurers on speed dial and just salivating for the goodies they collect.
So all that considered, any groups that provide this type of service that you do trust/use, and why?
None. As long as it’s “commercially available”, their interest is no longer aligned with yours.
Also, unless you are running your own Lemmy instance, I question your assumptions that using Lemmy is actually an upgrade to privacy and data ownership. I heard this point a lot and I don’t see the basis for this. Can you explain?
Unless you have a super compelling reason to get sequenced, do not use direct to consumer sequencing services or offerings. In general it’s not so much the tech or whatnot that is bad, but rather without being in a position to determine if you have some genetic, prospective genetic screening isn’t ideal.
If you feel you have a good reason to be sequenced (eg family history of a kind of cancer, particularly breast and colon), seek out a genetics consult with a genetic counsellor or geneticist at a major hospital or academic center.
This comment isn’t to constitute any kind of medical advice. Rather, you are much better served getting sequenced done well.
Do you know, are there typically any scenarios where work with a geneticist at a hospital may be covered by insurance?
I do not as this is not my expertise. In general though, reaching out to specialty academic/medical units are usually a great first step for pursuing something particularly esoteric.
I just want to cosign on this. I found out that I have Lynch syndrome, which carries an 80% chance of colon cancer and 60% likelihood of endometrial cancer. I thought I was prepared to hear that I had it, but I wasn’t. When I heard my test was positive, I freaked out. I was really glad to have a licensed genetics counselor deliver the news and talk with me in the following weeks and months as I adjusted.
No. They have that data forever. You can’t take it back.
Who knows what’s going to happen to it in 20-50 years, people never seem to consider those timescales when handing over their data to companies.
Worst part is, there is a solid chance they already have all your data from a sibling or close relative.
Ai machine learning decentralized blockchain Eugenism 3.0 babyyy
Wouldn’t trust any of them. Who knows where that data will end up. Especially when they suffer an inevitable breach
Your DNA mostly isn’t yours anyway. Your siblings are largely the same. I did a 23 and me years ago. No regrets yet. I’m eventually going to die probably in 40-50 years. I just don’t see how it can be used against me.
!Remindme in 10 years
That’s because you’re looking for direct, immediate, tangible impact to yourself personally - respectfully, that’s a rather shallow, self-focused view.
Tell me, in detail, how your health/life insurance premiums are calculated? Do you know that data from these companies, even in aggregate, isn’t being taken into consideration when they set process for your geographical location?
Certain data used to be off limits to governments, new law gets passed around major events that can change that. With the type of people that have gotten close to our have held power recently, do you want that data collected and in easy reach?
If you have the markers in your genes that predispose you to say alcoholism or drug addiction, would you want vodka companies to be able to ad target you?
Musk showed that billionaires can buy massive corporations at will and use them for their own agendas, do you want all that data accessible for musk or the next musk when one of those hipster-eugenics peddling natalist fascists decides they want a new project to “improve humanity” in their image?
Gotcha! I’ll remind you at Tuesday, September 28, 2032, 9:45:07 PM UTC.
Good bot
But everything you said would happen anyway if a close relative took the test.
If you do use one use fake data at least. Temp phone number and throwaway email. Fake name and address if needed. You can rent a P.O box if you need to receive a package.
All they need is the DNA to sequence. The account details won’t make a difference as long as you can access it. You can ask a friend to pay for you and pay them cash or use privacy.com or one of those prepaid debit cards.
sequencing.com seems to say the right things about privacy. Including the possibility to delete your data (can’t be compelled to turn over data that doesn’t exist). And this post claims you can create an anonymous account.
