I wouldn’t get sequenced in America with the fascists so close to control.
I had my genome sequenced and it's uploaded to the web with my name attached. Can you articulate a specific concern?
A new era of personalised medicine: or how I got myself sequenced for free
41–50 of 79 posts
Re: A new era of personalised medicine: or how I got myself sequenced for free
#42I'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 don't know anything about those two charities. In the USA, 501c3's are in many cases just businesses. Meaning--they aren't sacred benevolent entities. Waystar used to off a free look at a nonprofits 1040's. I believe their are other that offer a free look at this public information. So many nonprofits are ridiculously overfunded. So many only pay a livable salary to the key founders, usually an husband and wife tea…
GiveWell and Charity Navigator are well-known and trusted organizations that provide this service.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#43Fun 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.
You mean DTC DNA tests are illegal. DNA sequencing of humans is not. https://www.fiercebiotech.com/it/france-plans-745m-investmen... and I didn't have to look hard to find papers published by French authors in French journals that show they are sequencing humans in France.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#44There's no reason why we don't have sequencing for everyone at this point. Just imagining the opportunities we are missing here because of a) the US inane insurance system and b) the irrational technophobia of EU. It's 2021 and we 're not allowed to use our SNPs to prevent illness
Re: A new era of personalised medicine: or how I got myself sequenced for free
#45Fun 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?
afaik it was to prevent paternity tests
Re: A new era of personalised medicine: or how I got myself sequenced for free
#46Fun 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?
The ban is apparently to prevent access to paternity testing. Medical/scientific/judicial purposes are exempted.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#47There's no reason why we don't have sequencing for everyone at this point. Just imagining the opportunities we are missing here because of a) the US inane insurance system and b) the irrational technophobia of EU. It's 2021 and we 're not allowed to use our SNPs to prevent illness
Is data privacy not a valid reason?
Re: A new era of personalised medicine: or how I got myself sequenced for free
#48There's no reason why we don't have sequencing for everyone at this point. Just imagining the opportunities we are missing here because of a) the US inane insurance system and b) the irrational technophobia of EU. It's 2021 and we 're not allowed to use our SNPs to prevent illness
Is data privacy not a valid reason?
A lot of people would be willing for sequences to exist if they were treated like the medical records they are, and not as a startup's fungible data asset.
Re: A new era of personalised medicine: or how I got myself sequenced for free
#49Earlier quoted context omitted.
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.
The person you're replying to is the author of the article
Re: A new era of personalised medicine: or how I got myself sequenced for free
#50There's no reason why we don't have sequencing for everyone at this point. Just imagining the opportunities we are missing here because of a) the US inane insurance system and b) the irrational technophobia of EU. It's 2021 and we 're not allowed to use our SNPs to prevent illness
Is data privacy not a valid reason?
Are people's medical records private?