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

souradip.mookerj.ee

71–79 of 79 posts

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

#71
post #70

Earlier quoted context omitted.

There's no reason why we don't have sequencing for everyone at this point. There are at least two reasons: it's still expensive, and we still don't really know what to do with it. The "$1000 genome" is a bit of a myth, or rather PR hype from Illumina. Sure, they proved it could be done if you juke the numbers the right way. But I believe a clinical-grade whole-genome sequence still costs several times that much (see…

Not quite, that paper is pretty misleading if you're using it as a rock solid rejection of the $1000 genome. First, context: These are small scale clinical/experimental settings which clearly do not take advantage of economies of scale. Labor costs are thus greatly magnified. This effect is also obscured by their costing breakdown, which often does not separate reagent cost from labor. Unless I'm misreading this, the…

You make good points, but I think my overall point stands: Even a $1000 genome does not provide $1000 worth of value to a healthy individual today. So there is no point in trying to make WGS broadly available, nor is there any justification for insurance companies to cover it. It would be nothing more than a form of luxury "scientific entertainment" a la 23andMe.

Also, I would challenge your suggestion that "The expansive definition of 'sequencing cost' to envelope downstream analysis and storage here is also a mistake." I would argue that it's the opposite: delivering valid and useful sequencing results to a broad population would require even more resources directed toward analyzing the results and also interpreting them for the patients.

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

#72

Earlier quoted context omitted.

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…

I think it's a backwards logic of how paternity tests mean you "don't believe women" and thus are oppressing them. Completely ignoring the plight of men paying for children which aren't even their own.

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

#73
post #58

Earlier quoted context omitted.

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?

They can, but they won't. It's always about maximizing profit while reducing the costs. Everything they have can be used against you.

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

#74
post #43
post #21

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.

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.

Can the average person do it? Usually that is a sufficient bar for illegal in common parlance.

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

#75

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 i…

You can provide fake info to 23andme.

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

#76
post #43
post #21

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.

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.

You're right, that's what I meant. I didn't know the term "DTC" and should have explained the situation better.

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

#77
post #74
post #43

Earlier quoted context omitted.

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.

Can the average person do it? Usually that is a sufficient bar for illegal in common parlance.

I don't see any reason why an individual couldn't purchase their own whole genome sequence in France if only DTC is illegal.

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

#78
post #77
post #74

Earlier quoted context omitted.

Can the average person do it? Usually that is a sufficient bar for illegal in common parlance.

I don't see any reason why an individual couldn't purchase their own whole genome sequence in France if only DTC is illegal.

What does DTC mean in this context? I had assumed it meant "direct to consumer".

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

#79
post #41
post #35

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?

That’s easy. A government decides to collude with healthcare-for-profit. So they allow any provider to demand your genetic sequence. As things are discovered, they price your healthcare accordingly, economically disadvantaging you based on your genes.
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