Comment by dayvid | Hacker News Reader

Comment by dayvid | Hacker News Reader

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I asked 23andMe if there was any way to delete my genetic data from their site after the Equifax hack news. From their response:

"23andMe and our third party genotyping laboratory will retain Genetic Information, date of birth, and sex as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional Code Section 1265, and College of American Pathologists (CAP) accreditation requirements.

23andMe will also retain limited information related to your account and data deletion request, including but not limited to, your email address, account deletion request identifier, and record of legal agreements for a limited period of time as required by contractual obligations, and/or as necessary for the establishment, exercise or defense of legal claims and for audit and compliance purposes.

We recommend that you review our full Privacy Statement for more information about deleting your data before submitting your request."

So basically, once your in their system, you can't get out.

And you're paying them money for this.

Any way to do self-DNA testing?

I believe there are services that will do whole genome seq for you for under $10k(and I assume won’t keep your data). You could then use Promethease for analysis.

I’m unaware of any way you could do self-DNA testing at home unless you wanted to spend $100k+ on equipment, reagents, etc. The Nanopore might be relevant but I haven’t looked into it much.

Full Genomes Corporation[1] will do WGS at 30x for $1295, WGS at 20x for $900, and Long Read WGS (newer technology) for $2900.

For Prime Day, Dante Labs[2] had a sale on a 30x WGS for $349; it's still on sale for $499.

Once you have a WGS you might consider donating it to the Harvard Personal Genomes Project[3], Open Humans[4], or putting it on GitHub[5].

[1]: https://www.fullgenomes.com/whole-genome-sequencing/

[2]: https://us.dantelabs.com/products/whole-genome-sequencing-wg...

[3]: https://pgp.med.harvard.edu/

[4]: https://www.openhumans.org/

[5]: https://github.com/beaugunderson/genome

I've purchased a handful of Dante Labs 30x WGS kits on Amazon over the last couple of days. You didn't hear it from me, but the kits are still on sale on Amazon for $349...

... And an additional secret $100 discount during checkout.

This is $250 WGS at 30x coverage. It should be front-page news.

Are the results of WGS + analysis with promethease more insightful than the results of 23andMe?

23andme measures presence / absence of ~1M specific single-nucleotide polymorphism mutations (a SNP is a change in one "letter" of DNA), out of 10M+ total mutations known SNP mutations. Whole genome sequencing reads basically your entire genome, which consists of approximately 3 billion base pairs

so 23andme is like a unit test, and WGS is like the source code for the whole system

that said, we don't really know how to interpret most of the source code, so for a lot of cases (esp those that don't relate to medical treatment or research), 23andme is probably fine

Not for me. You obviously have more data, but like 23andme,I found very little of it to be actionable or useful. YMMV

What'd you use to analyze your genome, promethease?

I think that increased risks of x,y,z would be good to be aware of.

Yes, promethease. Have you done 23andme? It also gives you increased risks, but usually none that are helpful. For example, if it says that you have some Snaps that increase your risks of prostate cancer from 1 in 100 to 2in 100, what do you do with that? 2 in 100 is still so low (even though double baseline population risk), that it's not going to effect my decisions. That's also assuming it's accurate -- other SNPs may lower your risk.

I haven't done it because of privacy concerns, but I am considering WGS through a lab then promethease instead.

I don't think understanding risk would affect my decisions much either, but I'd probably get familiar with the symptoms of things I have a higher chance of to be able to recognize issues earlier. If there are screenings available, maybe I'd start doing them a little earlier or more frequently than prescribed.

Can you provide a link or more info? I’m not seeing it. It seems to be at $499.

It looks like this listing ended about the same time that I posted about it, or at least in the time between my posting about it and six hours ago. Now there are only $499 kits by third-party sellers. But when there was still FBA inventory (fulfilled by Amazon), it was $349 plus the secret $100 "promotion" discount during checkout.

Link? I'm seeing $499 in checkout on Amazon.

It looks like this listing ended about the same time that I posted about it, or at least in the time between my posting about it and six hours ago. Now there are only $499 kits by third-party sellers. But when there was still FBA inventory (fulfilled by Amazon), it was $349 plus the secret $100 "promotion" discount during checkout.

What's in it for these companies? Seems like there must be a catch

Why is Dante much cheaper than Full Genomes?

What's the benefit of "Long Read WGS"?

$1000 for the Minion and 2 flow cells. $900 per flow cell after that[0]. For 30x coverage (standard) takes about 15 flow cells[1]. So looking at $12700 to DIY.

[0] https://store.nanoporetech.com/flowcells.html

[1] https://nanoporetech.com/about-us/news/human-genome-minion

I asked myself the same question some weeks ago, and I did a bit of basic research. I didn't keep the sources, but I found there are 2 types of sequencing : "draft" and "full". From what I found, prices are quickly dropping over the past years, and the "draft" sequencing is becoming more complete.

Most likely, 23andMe does a "draft" sequencing.

Also I also read the value of $1000 for a draft sequencing.

I wonder, given there are about 3 millions deaths each year in USA, why isn't there some kind of government sponsored research to collect death people's genomes?

Every year, there would be 3 millions more genomes in database. People already dead don't need to have data protection or insurances risk, and there would be a full health historic and cause of death available for each genomes.

You’ll see 3 things in general:

Genotyping: this is what 23andMe does. Here they’re looking at a few million locations on your genome to see what specific letter you have. These are the locations which are most typically different in humans

Whole Exome Sequenckng (WES): full sequencing of your Exome. this is an oversimplification but the Exome has historically been viewed as where the “useful” DNA

Whole Genome Sequencing (WGS): what the name implies. Can be quite useful in cancer and rare disease research, and were increasingly realizing how much of an oversimplification my explanation of WES is

Almost all commercial “sequencing” that you see advertised is genotyping. And in the real sequencing world WES dominates WGS. In both cases it is due to cost. There are also a ton of options on all of these, such as how many SNPs are on the SNP chip in the genotyping case, or depth of coverage for WES/WGS

It’s also extremely easy to introduce human error into this process unless you’ve had a lot of practice.

You could do it at Stanford or Iowa State for like $3k ? You would still have to prep the samples.

This may be true, but I don't see how it applies to this story. You need to explicitly opt in for your data to be used for research. So if you have asked for your data to be deleted it would obviously not be used for this kind of work.

For now.

Other than your DOB and sex, can you just provide a fake name/email and go from there? Only people I want to share my genetic info with is my family, and they know how to contact me.

Problem is that it’s easy to correlate dna data against each other and infer who you are (assuming some small number of relatives have also used the service). In fact, a find your relatives service is built in.

It still certainly seems like it would limit your exposure to practical consequences. If a health insurance company decides to use DNA databases when calculating premiums, it would certainly be more difficult to use your DNA data if your identity is merely inferred by genetic analysis rather than voluntarily self-implicating yourself.

If they don't find your data, they will likely use your relative's data to infer the risk. I doubt your cousins, uncles and aunts would think twice before signing up with their real names to one of the "find where your ancestors came from for $69.99!" adverts.

This industry should be heavily regulated and have engineered security layers making sure you always know where your data is, who has or had access to it and how it can be used.

Even if you don't give out your peers information, they only need a few data points from your relatives (who may not even know they have given it their information) to figure out who you are.

You could use a EU-based competitor and then force them to delete the data through a GDPR request. Should work in theory, although I haven't tried it.

You should be able to force a deletion through GDPR in any case, if you're European; 23andme have a European office as well.

Using the EU office of a US corporation and assuming they will actually act in your best interest without them having been forced to in the past (and even then...) is very unwise, as multiple examples have already show us in the past. Please just use an EU lab (they exist, and they already removed your data before the GDPR if you asked) and accept that it's maybe a hundred euros more expensive. At least you can be a lot more certain you will not be invasively data mined later on.

[serious] But wouldn't they get deleted after being sold to the highest bidder?

No need to use a competitor : GDPR applies to all EU-based customers, regardless of where the service provider is.

I just fudged most of my data when I signed up. Things like gender and race I put in correctly since I assume it could affect the results, but birthday slightly off, and any contact information completely off (throwaway email address, fake name, etc).

No way in hell I trust any company in the US with my genetic data if it can be tied to me. Only reason I did the kit in the first place was at my girlfriend’s insistence.

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