Live data from Hacker News

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

souradip.mookerj.ee

51–60 of 79 posts

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

#51
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.

That's pretty harsh, and makes an ungrounded assumption that turns out to be not just uncharitable, but false.

The OP commented in a different thread around the same time as your rant:

> "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

#52

Earlier quoted context omitted.

Why would they make that a law? Please say there are medical/research exemptions at least?

afaik it was to prevent paternity tests

What???? Why would France not want paternity tests? Did they just watch 'Maury' to much and descide to nope out on this or something?

Because it, naively perhaps, seems to me like paternity test are a good thing on a societal level. Makes it easy to hold deadbeat fathers accountable. Proof of paternity can be used to for single mothers to demand child support. and in cases divorce due to infidelity can be prevent men from having to pay for other mens children.

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

#53
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.

Er, no. OP, in another thread:

"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

#54
post #9

I personally feel that this embodies the hacker spirit perfectly. Has this service been intended to allow the donor access to his sequencing data? No. Can someone use the systems in place to get this info anyway? Yes, as it shows. The other comments mind the burden to the charities. I personally cannot agree here. After all, this is the donors data. One might even think, that proactively sharing data could increase t…

Much appreciated, I'm glad you agree! :)

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

#55
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.

That's pretty harsh, and makes an ungrounded assumption that turns out to be not just uncharitable, but false. The OP commented in a different thread around the same time as your rant: > "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 thinki…

[deleted]

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

#56
It's hard for me to believe that there is still no way to get your genes sequenced anonymously. There has to be a big enough market for a startup to do so without storing and selling "anonymised" data, right? Is it really that expensive with modern tech to sequence a person's genes and compare against an existing database? I'd pay a good deal extra to 23&me if they'd be willing to take my sample without identifying information and return my results via an [throwaway] email address.

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

#58

There'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

Once a genetic condition is found, your insurance company will exclude certain treatments or skyrocket your premiums.

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

#59
post #58

There'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

Once a genetic condition is found, your insurance company will exclude certain treatments or skyrocket your premiums.

In the US. Can't they legislate against that? Are we going to be stuck forever in the year 2000 because of such fears?

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

#60
post #57

Earlier quoted context omitted.

Are people's medical records private?

Yes

Then DNA can be private too

(To be clear here in europe medical records are held by healthcare services, but they are protected. They are not private property tho)

Post reply on HN