[deleted] t1_iqo8zu1 wrote on October 1, 2022 at 9:32 PM

[removed]

__neone t1_iqobyqu wrote on October 1, 2022 at 9:54 PM

It’s not just the insurance companies, when you talk to individuals most people are very scared of this knowledge being permanent and public.

I’ve spent the last couple years working on making testing more available through employer benefits, I found many employers are on board with the idea, but many individuals are still scared.

I do think that pharmacogenomics (PGx) has the best chance of being widely available. It’s marker-based, not sequence based, which limits the amount of personally identifiable information that could get mishandled. And provides a lot of the benefits that you’re talking about.

When I’ve talked to employers, who would be on the hook for paying for this (and yes, employers are the one picking up the bill, not the healthcare administrators, most “insurance” in the US is really just paid by employers) they don’t like the idea of sequencing, but PGX makes a lot of sense, and the ROI is very clear.

VitaminPb t1_iqok3es wrote on October 1, 2022 at 10:57 PM

People should be rightly afraid of this data being weaponized. Imagine insurance being denied to you for certain conditions (such as a specific type of cancer) because of your DNA?

(And nationalized medicine would also use this to determine if you should be treated based on other things in your DNA.)

__neone t1_iqon705 wrote on October 1, 2022 at 11:21 PM

GINA provides some protection but I don’t think it’s sufficient.

However, PGx is not sequencing. I think that understanding drug reactions is important enough, and no worse from a privacy perspective than knowing what you’re allergic to, that it should be more widespread.

VitaminPb t1_iqooz71 wrote on October 1, 2022 at 11:35 PM

But I can guarantee you that within a few years of it becoming common, some police group/politician will decide that all those test sequences will be stored in a national database to “solve crimes” or “provide medical information”, just like everybody who is arrested or raped or joins the military has their DNA swabs taken and put into the criminal databases now. (See the recent case in San Francisco of the woman who was raped having her DNA used to arrest her later for crimes.)

__neone t1_iqopvci wrote on October 1, 2022 at 11:42 PM

Yes, I agree.

Again, that’s why doing marker-based gets the value without the sequence. I can tell some of your genotype based on phenotype (eg eye color). Testing for a few very discrete SNPs can save your life through knowing about drug reactions. Same as eye color, very small data point, not enough to do damage.

CardboardJ t1_iqqp8bo wrote on October 2, 2022 at 12:20 PM

I've heard this argument, but it still feels like you would be giving up the only real feasible cure for many cancers out of worry for police abuse.