Comment by zaptheimpaler

Comment by zaptheimpaler 9 hours ago

I wanted to try this, but I looked into Nebula a bit more.

Nebula is facing a class action for apparently disclosing detailed genomic data to Meta, Microsoft & Google. The subreddit is also full of reports of people who never received their results years after sending their kits back. There are also concerns about the quality of sequencing and false positives in all DTC genomics testing. Given what happened with 23andme as well and all of this stuff, I'm wary of sending my genetic data to any private company.

mquander 8 hours ago

I was interested to read this because some time ago I had my genome sequenced by Nebula. If you look at the lawsuit you can see that what Nebula did was use off-the-shelf third-party analytics products on their website, including recording analytics pings when users buy a kit, and pings when users use the Nebula website to browse Nebula's high-level analysis of their traits (leaking that the user has those traits to the analytics provider.)

This behavior represents a contemptible lack of respect for users' privacy, but it's important to distinguish it from Nebula selling access to users' genomes.

https://www.classaction.org/media/portillov-nebula-genomics-...

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vintermann 40 minutes ago

Another point is that Wojicki's big idea that all this genetic data would be useful to sell to business, didn't work out so well. For an advertiser, it's a lot more useful to know if you're a smoker, than to know that you have a 40% higher chance of being a smoker.

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zaptheimpaler 8 hours ago

That's a good clarification. I read through some of that link, and it does look relatively benign - Meta & Google pixels might see when you buy a kit but nothing more, but on page 21 they directly leaked genetic information to Microsoft via their Clarity tracker. Not intentionally maybe, questionable if it can be linked to a person specifically instead of just an advertising ID but they did leak that. I think the lawsuit says that even disclosing whether a person has undergone genetic testing is in violation of GIPA, so the information they sent to all 3 is enough to violate that.
I don't have any evidence they're selling anything but that lawsuit shows pretty sloppy behaviour for a company that should be thinking very deeply about privacy. I guess that's about what you said though :)

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busterarm 8 hours ago

The point isn't what they are doing with your data now, but that they retain your data and what might happen in the future. Someone with malicious designs on your DNA might buy Nebula tomorrow and there's nothing you can do about it.

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- mquander 6 hours ago
  
  Actually, the main reason I used Nebula was that they advertised a credible-to-me promise that you could download and permanently delete your data upon request. That was some years ago, so I don't know if I would trust them today. But that was their claim, and I have no reason to believe they didn't delete my data.
  
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  vintermann 17 minutes ago
  
  That's a legal requirement in the EU and many US states. Some of the genetic genealogy companies actually play fast and loose with it though - not the deletion, which I trust, but the data portability and reasons to store PI parts.
  
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Aurornis 9 hours ago

> There are also concerns about the quality of sequencing and false positives in all DTC genomics testing.

Even when the raw results are accurate there is a cottage industry of consultants and snake-oil sellers pushing bad science based on genetic testing results.

Outside of a few rare mutations, most people find their genetic testing results underwhelming or hard to interpret. Many of the SNPs come with mild correlations like “1.3X more likely to get this rare condition” which is extremely alarming to people who don’t understand that 1.3 times a very small number is still a very small number.

The worst are the consultants and websites that take your files and claim to interpret everything about your life or illness based on a couple SNPs. Usually it’s the famous MTHFR variants, most of which have no actual impact on your life because they’re so common. Yet there are numerous Facebook groups and subreddits telling you to spend $100 on some automated website or consultant who will tell you that your MTHFR and COMT SNPs explain everything about you and your ills, along with which supplements you need to take (through their personal branded supplement web shop or affiliate links, of course).

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phyzome 9 hours ago

Yeah, the only way I would ever do DNA sequencing is anonymously...

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jjallen 7 hours ago

Because of public family trees potentially linking a genome to a family, no dna is fully anonymous these days.

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