Live data from Hacker News

A new era of personalised medicine: or how I got myself sequenced for free

souradip.mookerj.ee

11–20 of 79 posts

Re: A new era of personalised medicine: or how I got myself sequenced for free

#11

I'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 team.

One day, I want to put together a list of good nonprofits.

I once heard St. Jude Children's hospital has enough funding to last for 20 years, including costs of new technology; if donations were cut off today.

My point is be savvy with donations. There are very good charities out there.

(True story. National parks have one spot in the park available for first admendment speech. In Muir Woods National Monument it was a couple of parking spots. For years this guy used to hand out flyers to tourists who just got off buses.

He had some nonprofit that proposed to save Redwood trees. I looked up the nonprofit, and couldn't find it. Every night he would show up to the local watering hole with a 3" stack of money he woukd count out. I imagine he was making 2-3k a day. Why am I enclosing this? Because I'm tired of charities taking advantage of certain people.)

Re: A new era of personalised medicine: or how I got myself sequenced for free

#12
post #8

"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…

Ahh that's what's going on, the first sentence conflates the two and the second sentence doesn't specify PBSC.

Re: A new era of personalised medicine: or how I got myself sequenced for free

#13

"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…

Easy mistake to make since the first part lists two different things. However, the listed orgs are both blood stem cell donation charities.

Re: A new era of personalised medicine: or how I got myself sequenced for free

#14
post #8

Earlier quoted context omitted.

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…

Ahh that's what's going on, the first sentence conflates the two and the second sentence doesn't specify PBSC.

[deleted]

Re: A new era of personalised medicine: or how I got myself sequenced for free

#15
post #4

Let 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.

Re: A new era of personalised medicine: or how I got myself sequenced for free

#16
post #5

I feel like GDPR-ing a bone marrow registry to obtain one's data is rude. I got my HLA data from the registry by asking politely.

GDPR SARs are just a standardized form for a data subject to have access to data on herself.

It is, in my opinion, far politer to use a form letter Subject Access Request that can be dealt with using a standard process rather than a custom interaction.

I see it as just picking things off a menu. Far less trouble than describing to your waitress that you’re looking for a ground beef patty, grilled with cheese, with onions, tomatoes, and lettuce added and placed between two buns.

Just say cheeseburger. You know cheeseburger. They know cheeseburger. Everyone is better off.

Re: A new era of personalised medicine: or how I got myself sequenced for free

#17
post #4

Let 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.

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.

Re: A new era of personalised medicine: or how I got myself sequenced for free

#18
post #4

Let 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!

Re: A new era of personalised medicine: or how I got myself sequenced for free

#19
dont 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.

Re: A new era of personalised medicine: or how I got myself sequenced for free

#20

dont 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!
Post reply on HN