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Comment by loughnane | Hacker News Reader

This is why I’ve been putting off getting my genome sequenced. One breach and it’s out there forever.

I’ve heard good things about nebula[0] as a way to get an anonymous genome but have yet to be motivated enough to take the plunge

[0] https://nebula.org/whole-genome-sequencing/

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Nebula is definitely an interesting entry into the market. There's also Dante Labs[0], which often offers 30x whole genome in the 200-300USD range. You can download all your raw data (including FASTQs, h37-aligned BAMs, and VCFs) from AWS. There are some quality concerns (and they use BGI instead of Illumina sequencers), but at that price it's tempting to do Dante and Nebula as a check on each other.

Dante also has what seems like a pretty good privacy policy, including an option to destroy your saliva sample and delete all your data[1]. Obviously you still have to trust them, but it's a step in the right direction.

There's a good Facebook group for customers of both Dante and Nebula[2].

[0]: https://www.dantelabs.com/

[1]: https://us.dantelabs.com/pages/privacy-policy

[2]: https://www.facebook.com/groups/373644229897409/

> including an option to destroy your saliva sample

Until I read that sentence, it honestly never occurred to me they would keep that around. The data, sure. Biological samples? I just assumed they would be disposed of after use.

Collect it all.

No reason to discard it, better sequencers are always around the corner

Ever heard of HeLa cells?

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

RadioLab did a great episode on Henrietta's story

https://www.wnycstudios.org/podcasts/radiolab/segments/91716...

A sample can be used for multiple analyses. For instance, a customer might pay for autosomal DNA analysis and later want to pay extra for mitochondrial DNA analysis. If the sample has been destroyed, no problem just send in a new sample - unless the subject has died in the meantime.

Is it strange to suggest discussing anything on Facebook, given how little privacy is afforded to users?

I find it just a bit weird that products that customers recognize require privacy as a core tenant would also just head on over to Facebook to add new, targeted meta to their verified Facebook profile.

agreed w your observation; yes it's strange / weird, almost unfathomable.

also, in a genuinely non-pedantic, "aiming to help and educate, not nitpick" way, may I offer this tidbit:

tenant: legal inhabitant / renter / occupant

tenet: principle or belief

Pseudononymously getting yourself sequenced is the way to go, but if enough relatives have their genes leaked under their real names, piecing together family trees isn't difficult.

One half-hearted option is to order a kit "as a gift" from one of the major sites and register it under a pseudonym. You're taking a risk that they're not keeping track of which kit serial number is shipped to which shipping address, and hoping the timing of the order can't be too easily correlated with the serial number.

Regardless of their policies, they still want to store it themselves and put it on the Internet.

I am hoping that someday there will be a sequencing company that will mail me a drive containing the only copy and destroy the sample.

I'm not worried about a sophisticated attack on my individual sequence but I suspect most of these services are or will be targeted by advanced and persistent attackers.

Call me paranoid but I don't want my genome in an internet connected database (though I am very curious to see it).

And you should trust that company or government based on what?

I have no argument against more paranoia, but my curiosity is such that I'm willing to take some risk.

This is not meant to be confrontational in any way: what are the risks of having your genome exposed?

Primarily my concern is what it will be possible to infer about a person (or what some people think they can infer) from the genome not just now but in 40 years.

The history of science and politics are filled with ugly chapters of people committing bad acts based on the ancestry of other people.

I wonder if there's some way to do testing on a walk-in basis, in a way that would allow transparency re the lack of sample and data retention.

So a customer walks in, provides a sample, and walks out with data on a thumb drive. And perhaps also with the module that was used for the analysis.

That would obviously more expensive than the $100 sequencing a lot of people are looking for, but for very privacy conscious people this could be available right now with a MinION[0] that's already in the $1000-2000 range, if you really want to take the whole device with you.

[0]: https://nanoporetech.com/products/minion

Wow, that's better than I expected! So maybe a resale market could develop on Craigslist or whatever. Buy one, get your data, clean and wipe it thoroughly, and then resell it. Maybe the refurbished price would stabilize at $500 or whatever.

There are some caveats with that though (some of which I just found out after some digging):

- You'll probably need more than one flow cell (which is used up during sequencing) for a human genome

- The flow cells make up the bulk of the price, costing ~$800 in single unit quantities

- You have to send in used flow cells for refurbishing (which is how they can make them as cheap)

So the $1000 is more or less already the refurbished price.

I wonder how fast the flow cell price will drop. But even at $1000 I might be tempted, except that I'm so damn old, and never (as far as I know) had any kids.

While it mostly comes out to the same, I doubt the price will drop much, but rather they will release a newer iteration of flow cells with slower degradation or more redundancy.

There also doesn't seem to be any significant competition, as Oxford Nanopore has a very broad patent portfolio surrounding their tech.

Is there any law/rule stopping me from getting your DNA and getting it sequenced? Other than most people wouldn't want to pay to get that done? Collecting your DNA would be the hardest part of that, I guess.

From an ethics standpoint their's something to talk about here...

From an individual standpoint I really don't care about someone out in the public knowing my genome. It's not like I store my passwords on my genome, how is this information going to be used against me?

One example might be the BRCA gene mutation. It gives you a higher chance of breast cancer and is typically associated with Ashkenazi Jews.

I'm sure your insurer would be interested to know if you have it, and that potentially your children are at an elevated risk.

Unfortunately there might be people interested in the ethnic association as well.

You got a point, but from a different angle is it ethical to hide your medical data from a company that may end up paying all your medical bills? It's almost like how people hide finances, you hide it because you want to do something unethical.

If I was jewish, I feel that right now I would just be slightly worried for myself. In general I wouldn't be too worried at all. I would, however, be more worried for my jewish kids, they may have to deal with that stuff in the future.

Although I would worry, I would question whether my worry is based on ethical grounds as that part is not clear.

I'm the founder and CEO of Nebula. I think in the not too distant future, everyone will get whole genome sequencing as standard of care. We think it's important to set up the privacy frameworks today around storing and sharing access to DNA. It's interesting because all of the risks of having your DNA data out there are not fully understood yet. And, as a consequence, legislation hasn't caught up to the technology. Should life insurance companies be able to use your DNA? Should schools be able to use it as an admittance criteria? Well, right now the law isn't stopping them from doing so. This hasn't been a huge problem today because, if you're really concerned about DNA privacy, you just won't buy a DNA test. But, sooner than later, you'll need genetic testing to get the right medicines, optimal treatments, best diagnostics, etc. Once whole genome sequencing makes the transition from consumer use cases to clinical ones, many users will be faced with choosing between their health and their privacy. We don't think that's a fair choice and think we need to start working on mitigating the privacy risks today.

It's kinda sad that the genome sequencing machines need to be fed loads of genomes in order to offer cheap prices for customers. You can't just buy one for home then use it a couple of times to sequence your family. That'd be most privacy preserving, but the fabled 1k whole genome prices are (currently) only available in high throghput machines. OTOH it's also better because that reduces the nonconsensual sequencing.

The federal government could maintain a central database containing the DNA of every citizen. Submitting a sample might be incentivized by barring people from, say, receiving social security, disability, government backed mortgages and student loans, food stamps, tax refunds, and other federal benefits if someone doesn't comply.

The National Institutes of Health, the Centers for Disease Control, the Central Intelligence Agency, the National Security Agency, the FBI, DEA (Drug Enforcement Agency), ATF (Alcohol, Tobacco, and Firearms), ICE, CBP, and DHS (Department of Homeland Security) could then mine the database for insights into disease, epidemics, crime, intelligence, and so many other purposes. Just imagine the possibilities.

In a perfect world, sure, but in the real world this would obviously be ripe for misuse. Hard to tell if you're being serious or not.

Why would DNA have anything to do with crime?

I am not an expect, but it seems like DNA is responsible for around 50% of the personality variance between individuals. Note that the variance within groups is an order of magnitude bigger than the variance across groups, so there aren't super strong ties to race.

I would imagine personality and/or propensity to mental illness or addiction are decent predictors of likelihood to commit crime.

See this podcast for an actual experts take https://samharris.org/podcasts/211-the-nature-of-human-natur...

That sounds like "predictive policing". The problem is that the institution that wants to predict crime might be inclined to use attributes of people who were previously arrested/convicted as the basis for the predictive model.

They won't be watching out for you based on personality disorders, addiction, or any other reasonable indicator. They'll watch out for you because you have attributes that match the type of people in jail right now. It's not going to be indicative of criminal behavior.

If they put moderate resources into it I'm sure they could come up with something fairly predictive. For example this paper [1] finds a significant, but weak correlation between height and violent criminality. Genetic influences on height are well known. However, point taken that all models are subject to abuse.

The morality is still fairly grey though, and I think the reward vs intrusion ratio would have to be pretty high before it gets widespread buy-in. Personally, I prefer the state being disinterested in my genes.

[1] https://academic.oup.com/ije/article/43/3/835/760664

If you were putting off 23andme in 2009 you would miss out on their health reports (they have banned since).

If you were putting off whole genome sequencing last year, it will be banned by next year.

I m afraid it works the opposite: early adopters take risks and reap some rewards , late adopters are being played by regulators, spying govts and scammers.

About a decade ago I thought about volunteering for one of the public genome projects but then realized that (1) the legal protections didn’t exist yet and (2) the privacy question should be considered not only by me but also by my family.

One of the biggest of those: https://www.joinallofus.org/

I've considered joining it.

What is the impact of having your DNA known? As far as I can tell the worst case scenarios are finding out you have to pay child support or getting placed at the scene of a crime.

If those risks don't apply to you, who cares?

If you’ve got nothing to hide... then make it all public. Let’s start with your finances.

Finances are different right? People tend to hide their finances because of taxes and other illegal shit, and also to prevent jealousy.

As for genetics, most of your genetics are on display every time you walk out the door. People look at you and they can have a good guess about a huge portion of your genes. For example if you have a beard and a penis you probably have a Y chromosome, though this is more challenging to figure out nowadays.

Thus mostly their's really nothing left to hide in terms of genetics. In terms of finances... while I specifically have nothing to hide, more people have things to hide in this area.

I openly talk about my finances with anyone who wants to talk personal finance. What threat are you imagining this could pose?

let's start with your bank account and routing numbers.

I share that information when it benefits me. That's the basis of ACH. Next?

Specific pornographic preferences and fetishes? Nothing illegal there, no reason to hide.

What is the advantage of sharing that information?

That argument is so bad and is so inefficient that it does more harm than good. People sacrifice their privacy as a trade-off to get something. What do they get by simply releasing all their finances?

Every time I've used it they just laugh it off with "why would I do that?" and think I'm ridiculous.

This is a variant of “the honest have nothing to hide” argument, which is just wrong.

No, it is not. That argument is about what should be legal. We are discussing what is personally risky. These are completely different concepts.

What are the benefits of you knowing? Seems like the only reason is mild curiosity.

The benefits of personal DNA tests are learning about your health and your genealogy.

Getting placed at the scene of a crime applies to everyone.

Remember that once you do it, it’s out there forever. So you can’t just rely on “I haven’t and won’t break any laws that exist in my country right now”.

Having certain characteristics that show up in your test could be illegal in 20 years time. You don’t know.

That's an interesting point, but if your government becomes blatantly oppressive they don't need DNA to do it.

No but the DNA database helps them track you down.

Sure. They might outlaw brown hair, too. They might outlaw last names with vowels. That hypothetical, imaginary risk doesn't make it sensible to dye your hair and change your name.

Tell the 6 million Jews, hundreds of thousands to million+ Romanis, and hundreds of thousands of disabled who were systematically exterminated by gassing, shootings, starvation and various other means that being outlawed is a "hypothetical risk". Even beyond WW2 to say what you said is so incredibly against any form of historical understanding that one must start to wonder what your motive with it is.

Your motive appears to be to troll from a position of ignorance. No, DNA tests do not cause holocausts.

The resistance movement in Norway, during WWii, targeted and blew up the citizen registry, because it was used for evil. Any database we build now could be used like that. Now they are easily copied, so we won't be able to blow them up when it's already too late--we must avoid building them.

Do you think it was a mistake for countries to continue compiling databases of citizens after WWII? Census? Phone books? These are all mistakes?

More to the point, the government can just collect your DNA itself if it wants to.

I was just wondering if this one leak would spur a hike in organ thefts. Or a spike in abusive husbands and fathers, pedophiles and rapists tracking down the victims that escaped them.

Even if this doesn't happen, the future is a devious thing; I think we will eventually get to a stage of gene oppression; We have went through periods of oppressing and persecuting religion and ethnicity. DNA seems even more vulnerable to this kind of prejudice. And even if we can secure some legal protection, to the million peoples families, that won't matter now.

I don't know what will happen in the future, but i can imagine how much smoother the holocaust would have went if DNA were public.

Organ theft and the holocaust? If that's what you're worried about your problems are already much much much more severe than what we're discussing here.

What problems would you rate as more severe than being gassed alive or having your organs stolen?

we should always try to minimize future catastrophes by enshrining rights and regulation around issues that could contribute to them.

We should not be tricked into ignoring these issues because catastrophes are rare, as this would logically make them less rare.

> If those risks don't apply to you, who cares?

Others have mentioned that that's a bad argument, so I won't rehash that.

> getting placed at the scene of a crime

That's a pretty damn bad "worst case scenario", but here's a few I'm going to toss out without too much thought:

1. Health insurance companies can deny you coverage. In America, that can be a literal death sentence. (Yes, GINA 2008 was passed, no, I don't want to bet my future health care coverage on it not being repealed, mangled, or bypassed in some other way.)

2. International risks. A lot of discussion here is largely focused on American law. But many of us aren't American, or aren't just American. Look at my username; I have ties to another country, and I frankly have no idea what sort of risk I might get exposed to there. Getting placed at the scene of a crime in some jurisdictions is much more serious than you make it out to be; being identified as being a relative of someone else could also have dire consequences.

3. You know those scams where Grandpa Joe gets a frantic call from his distraught granddaughter Jane, and she's in Mexico being held up on a bogus charge, but if he wires their police department $500 ($5000?) the whole thing goes away? This becomes much easier if you can look up family histories.

4. You cannot predict the future. You have no idea what's coming down the pipeline.

I'm not seeing anything compelling in any of your 5 points.

0. You are arguing that people who aren't subject to a specific risk should be worrying about being subject to that risk. That is a bad argument. So bad it feels absurd to have to type it out to you.

1. The law could change in the future? OK... Laws could change in an infinite number of ways. I can't mitigate an infinite number of risks.

2. If you visit a country where this is a risk to you, then avoid the risk. Nobody said otherwise. It is dishonest to argue with strawmen.

3. There are many easy ways to find someone's relatives. DNA does not change this situation in a material way.

4. Yes, I agree that you cannot predict the future. But much of your argument is based on the assumption that you can do so.

According to their own FAQ, Nebula uses a lab in HK. In current times, that may be of concern.

surely enough of your cousins did that it doesn't matter

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