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.
A new era of personalised medicine: or how I got myself sequenced for free
21–30 of 79 posts
Re: A new era of personalised medicine: or how I got myself sequenced for free
#22Earlier 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.
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).
Re: A new era of personalised medicine: or how I got myself sequenced for free
#23An 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 the HLA locus is fairly widely researched in its associations with infection and (auto)immunity!
Re: A new era of personalised medicine: or how I got myself sequenced for free
#24dont 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!
shouldn't you be able to match yourself (at least partially) by uploading your data somewhere?
Re: A new era of personalised medicine: or how I got myself sequenced for free
#25Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.
Hiya, author here! I wrote the article to mostly encourage others to sign up to these charities to help accomplish their mission, the data generated as a by-product is just a cool side-effect!
It’d be fine if the charity made it an option to donate an additional amount if you wanted your sequence provided to you, to cover their cost to fulfill the request (negating the need to fulfill a GDPR request). Otherwise, it’s just poor form and not to be emulated.
Because one can does not necessarily mean one should.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#26Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.
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 :)
Re: A new era of personalised medicine: or how I got myself sequenced for free
#27Earlier quoted context omitted.
Hiya, author here! I wrote the article to mostly encourage others to sign up to these charities to help accomplish their mission, the data generated as a by-product is just a cool side-effect!
It’d be fine if the charity made it an option to donate an additional amount if you wanted your sequence provided to you, to cover their cost to fulfill the request (negating the need to fulfill a GDPR request). Otherwise, it’s just poor form and not to be emulated. Because one can does not necessarily mean one should.
I do, and I donate to these charities because it's a cause quite close to my heart.
At present it's clearly not scalable to be sending GDPR requests one person at a time. I think perhaps if this kind of incentive brings more people to sign up than traditional donor recruitment drives (which is often much more than handling a request for data!) then these charities will provide easier, more scalable ways to access this data :)
Re: A new era of personalised medicine: or how I got myself sequenced for free
#28Earlier quoted context omitted.
It’d be fine if the charity made it an option to donate an additional amount if you wanted your sequence provided to you, to cover their cost to fulfill the request (negating the need to fulfill a GDPR request). Otherwise, it’s just poor form and not to be emulated. Because one can does not necessarily mean one should.
I do, and I donate to these charities because it's a cause quite close to my heart. At present it's clearly not scalable to be sending GDPR requests one person at a time. I think perhaps if this kind of incentive brings more people to sign up than traditional donor recruitment drives (which is often much more than handling a request for data!) then these charities will provide easier, more scalable ways to access thi…
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Re: A new era of personalised medicine: or how I got myself sequenced for free
#29I'm all in favour of signing up as a marrow donor (I'm registered with DKNS myself) but burdening charities with administrative tasks to save yourself money feels a bit... cheap, and you get a lot more for paying for a full genome sequencing or even a 23andme report.
I should probably say that my primary reason for signing up to a stem cell donor registry is to actually be a donor! This data is generated as a byproduct of signing up and is also quite interesting on a personal level.
I was thinking that framing it in a way to also find out interesting things about yourself might be a good way to encourage people who might not have thought about it to sign up for the first time, and this would be far more cost-effective than a traditional in-person donor recruitment drive, but let me know what you think!
Re: A new era of personalised medicine: or how I got myself sequenced for free
#30Earlier 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).
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