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Comment by thenerdhead | Hacker News Reader

For those who have/had long covid, the big question seems like whether it is worth doing a genetic test to find out.

On one hand you'll know and be able to blame your genetics while working with your healthcare providers on any developing treatments. On the other hand, that data could potentially be used against you in the future for life insurance, disability insurance, or long term care insurance.

Seems like a damned if you do, damned if you don't type of situation. Make sure you read the privacy policies of any provider you go through. DNA is the most personal, private, and detailed part of you. Is it really worth it?

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Until there are strong privacy guarantees around the sharing of this data in one's jurisdiction, which are both 1. enforceable and 2. likely to actually be enforced in practice, it seems that the downside of conducting a genetic test: dozens of companies using that data to make "decisions" about you, exceeds any potential upside.

For many people, like myself and many friends and family, we've already been fully sequenced, so usually when one of these new studies comes out, it's just a matter of going to https://you.23andme.com/tools/data/ and looking up the SNP in question, which I guess is rs9367106. It would be nice if more articles like this would just give the marker and what the variants mean for the study, but I guess we're not quite there yet.

If you only did the normal 23 and me test, you weren't fully sequenced. Just a tiny subset. Since most phenotypes are in fact caused by large numbers of mutations, each acting in a non-linear (non-additive) way, just knowing this SNP doesn't really provide that much information (except if the specific allele is highly penetrant, which seems unlikely in this case).

You can always use a false name and a prepaid card to get the test done. They can probably link it back to you through your relatives if they really want to but in most cases they’re not going to look that hard.

> … but in most cases they’re not going to look that hard.

Depends on the meaning of “they”.

They may not be looking hard today, but I doubt they're just going to delete the information. The information will stick around into the future, and we don't know who will be interested in the data in the future.

A bit like getting a dashcam installed in your car...

(I wonder if there any recorded instances of people swallowing microSD cards from their dashcams after car crashes...)

What you fear is illegal in the US under the affordable care act iirc.

That can change. One of the two major political parties made getting rid of that law a core campaign promise for nearly a decade.

Not exactly. You are probably referring to the Genetic Information Nondiscrimination Act of 2008 (GINA). It protects US persons against employment and medical insurance discrimination based on genetics but doesn't apply to other types of insurance such as life insurance.

https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...

Also a law that could change at any minute.

I mean, any law could change any minute, but this one passed nearly unanimously in both House and Senate. There was only 1 vote against it in the House: https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...

Maybe back that up with a source because the three insurances I referenced in my post are not protected by any means. Those are also key insurances for anyone with a debilitating illness such as the topic of discussion.