Fun fact: getting a DNA sequencing is illegal in France and is punishable by a 3750€ fine. I find this frustrating that I can't legally access my own DNA.
Why would they make that a law? Please say there are medical/research exemptions at least?
A new era of personalised medicine: or how I got myself sequenced for free
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Re: A new era of personalised medicine: or how I got myself sequenced for free
#32dont do this. you can sequence yourself from Dante labs (an italian company IIRC) which will give you all the data of 30x sequencing including the raw reads for like $200. The problem is -- i don't know what to do with the data as i havent had the time to do anything.
You can sequence yourself properly (and it's more information that way), but this way you can get called upon to donate if you're a match for someone somewhere in the world!
> you can get called upon to donate
Dude, calm down.
Donating bone marrow is probably ok, but note that before donating a kidney, understand that can affect your health and life expectancy. That was not told to past donors, but it's a thing. (As you get older, your organ function decreases from 100% (or 200%) to less than 100%, so losing a kidney affects older people.
In China, people in banned religions are "volunteered" for double-lung and heart transplants, so it also matters what country you're in. Their transplant science is based on 28 year-olds, so if you're several years younger or older, you should be good unless you have a rare typing.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#33Earlier quoted context omitted.
You can sequence yourself properly (and it's more information that way), but this way you can get called upon to donate if you're a match for someone somewhere in the world!
shouldn't you be able to match yourself (at least partially) by uploading your data somewhere?
Ideally, non profit organizations around tissue sourcing provide a mechanism to ingest raw genotyping data [1] from providers through an auth flow for those who have previously been sequenced or don’t want to burden the charity (if a donor can afford it) with the sequencing cost.
If one could “one click” share their genotyping from from a sequencing provider, I imagine you’d see an uptick in coverage for donor sourcing across the populace. The data is already out there.
[1] https://customercare.23andme.com/hc/en-us/articles/212196868...
Re: A new era of personalised medicine: or how I got myself sequenced for free
#34Earlier quoted context omitted.
I'm assuming the charities get a better rate, but typical home kits cost about $200... Not cheap to give out for free even if they get a 75% bulk discount. They're also not likely to get money from people like this who were deliberately working the system to avoid paying. Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
Sure, though here in the US I would bet most insurers would require a physician to order the test for it to be covered? Which presumably would happen only if they thought it'd be useful for diagnosing something, rather than that you were curious (esp. if your curiosity was about your heritage and not something clearly medical).
Yep, a physician has to order the test, but considering they are extremely useful in preventative medicine most people I know that have had it done didn't have any issue getting a doctor to order one.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#35I wouldn’t get sequenced in America with the fascists so close to control.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#36Earlier quoted context omitted.
Yeah, kind of like "how I got my food for free" and the punchline is you went to a local food bank. If you're really that interested it getting it done for the sake of curiosity the you can pay a variety of services about $200 for it.
I like to think that using this analogy, here you're going to the food bank and donating food (or your stem cells) while getting data on how many people liked it in return. I've seen too many kids with blood cancer who couldn't get a match, so please do consider signing up to your local charity :)
That assumes this person is willing to donate-- from their statement on the organization I think they probably are, but the tone of the article beside their description of the organization seems to be "Yeah DKMS is good but look here's a cool loophole to get free stuff!".
That's not exactly a message that will attract those interested more in helping people than free medical data about themselves.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#37An importing distinction: The author did not get himself sequenced. He had genotyping. Genotyping basically picks out a few specific data points. Sequencing reads an entire piece or entire genome completely. From a health perspective, genotyping pulls data points that we already know can be markers for something significant. Sequencing gets a lot more data, and would sort of be "future proof" against the need to do f…
This is very true, and genotyping just the HLA/KIR loci won't tell you much about all the other genes that are important for health. However, the HLA typing is at least a start (and a free byproduct of signing up to donate stem cells) to introduce you to the rabbit hole of personal genomics! :) This is also slightly different to the (linkage-disequilibrium-based) SNP arraying done by other genotyping places, since th…
Oh absolutely... It's a lot more expensive for sequencing, so there's no reason not to take a cheap option that at least gets you checked against known issues.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#38"You may be aware of bone marrow, or stem cell transplants. These are life-saving for the people who need them, especially after a blood cancer. You can sign up for free at charities such as Anthony Nolan or DKMS in the UK." "And it was a win-win scenario - they get to call upon me if someone needs my stem cells (a painless procedure that's no more complicated than donating blood)!" Maybe I'm confused but this person…
The there are two procedures, the stem cell procedure is acurately described according to the link you posted. > How are bone marrow and peripheral blood stem cell (PBSC) donation different? > Donating bone marrow is a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone. > PBSC don…
As someone who's donated via PBSC it's a whole lot more than a regular blood donation. Two batteries of tests, the drugs are no joke, and the donation session is more or less a whole day affair - or two days if you're unlucky and they don't harvest enough cells the first day (I was unlucky).
I don't have any regrets doing it - the impost on me was fairly trivial compared to the difference it can make for the recipient, but it's not a thing to be taken lightly.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#39I wouldn’t get sequenced in America with the fascists so close to control.
I actually regretted donating because of this very reason. If I’d thought about it I wouldn’t have. But the bethematch.org marketing material really tugged at the heartstrings. Never again, though.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#40Earlier quoted context omitted.
I wonder if charities couldn't offer it as an incentive to attract more potential donors? Agree to participate, and we'll give you your sequence upfront, no data-release-requests needed? Obviously some people are trying hard not to be sequenced for any reason (because of privacy concerns apparently) but plenty of other people are interested in heredity, or health implications.
I'm assuming the charities get a better rate, but typical home kits cost about $200... Not cheap to give out for free even if they get a 75% bulk discount. They're also not likely to get money from people like this who were deliberately working the system to avoid paying. Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
If you don’t ask them for the info, they still pay the same rate. You’re only asking them for data they already have on you. And you’re still on the donor list.
The difference between you and someone who doesn’t request is minuscule. An automated process sends someone a PDF. The world isn’t going to collapse under that weight.