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Why did you send them your DNA? It was pretty obvious from day 1 that sending some random startup on the internet my DNA was a bad move.


No, I don't think that that's obvious. At least in the US, there are already protections for genetic information (including but not limited to GINA [1]).

In the long run, I think keeping your genetic information private will be untenable- the potential benefits will outweigh the drawbacks. Plus, anyone sufficiently motivated could get your DNA somehow, you shed your DNA everywhere you go, no getting around that.

So what's left is to urge your representatives to maintain and strengthen regulations on how that information can be used, and in the long run we'll just have to trust that that will be enough.

[1] https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...


> In the long run, I think keeping your genetic information private will be untenable- the potential benefits will outweigh the drawbacks.

Can you give an example?

> Plus, anyone sufficiently motivated could get your DNA somehow, you shed your DNA everywhere you go, no getting around that.

That assumes there's someone out to get you specifically. That's like saying there's no point in having 2FA or strong passwords, because the FSB, the FBI and Mossad can get in anyway. Having my DNA because you vacuumed it up off the subway floor is significantly less useful to anyone without it being explicitly tied to me.


> Can you give an example?

See my other comment, but in short I essentially mean the true realization of "precision medicine" and gaining a greater understanding of how different genotypes result in disease, information which can be used guide treatment and to develop better treatments.

> That assumes there's someone out to get you specifically.

Not entirely true- the ability to reconstruct genotypes from environmental samples gets better all the time. I'd imagine that even with current technology, a sufficiently motivated organization could sample various locations to reconstruct the genomes of people who often visit there. With enough info, they could start building webs of genetic relation. From there, all they'd need is access to a database of samples from known individuals (which, as we can see, already exists), can chances are they could quickly deanonymize future samples. The only thing that could stop such mass collection is proper regulation.

> That's like saying there's no point in having 2FA or strong passwords, because the FSB, the FBI and Mossad can get in anyway.

Unlike your password, your DNA is unencrypted and gets spread everywhere.


>> That's like saying there's no point in having 2FA or strong passwords, because the FSB, the FBI and Mossad can get in anyway.

> Unlike your password, your DNA is unencrypted and gets spread everywhere.

This doesn't address the point. In both cases, someone sufficiently motivated could get what they want from you. So by your argument, there's no point in maintaining privacy for either piece of information (DNA / passwords).


> So by your argument, there's no point in maintaining privacy for either piece of information (DNA / passwords).

The problem with privacy is that it's fragile. When your info is leaked, you should assume it's out there for good.

I also think that while right now when you do the cost/benefit analysis of having your DNA sequenced, you think the cost outweights the benefit. Clearly my personal calculus is different than yours, and that's ok. But I would caution you that in the future that calculation may be different for you.

So I think people will either lose privacy, or voluntarily give up some privacy for some benefit. In either case, we will need something other than privacy to protect ourselves. I think that well-enforced legislation, legislation that limits the way genetic info can be used and gives the individual more control over their own info, is really the only thing that can help.


> I think that well-enforced legislation, legislation that limits the way genetic info can be used and gives the individual more control over their own info, is really the only thing that can help.

Absolutely, in theory. But when have politicians respected legislation's original intent over their self-interest over time, especially when monied parties are desirous of changes for those party's own ends?


Clearly a bad faith argument. someone with your passwords can do a lot more damage than someone with your DNA.

I think DNA is probably sensitive on the level of someone knowing your name and DOB. Not convinced it's much more dangerous than that.


That's only true now. You don't know that DNA leakage won't be a higher risk in the future (and FWIW, my opinion is the opposite of yours regarding the future risks). Moreover you can change your passwords, but you can't change your DNA.


>Plus, anyone sufficiently motivated could get your DNA somehow, you shed your DNA everywhere you go, no getting around that.

But these people need to get close to you. 23andme made it easy for someone who could have been on the other side of the globe.


And do what with it?


I really don't see how this changes the threat model. If anything, I'm less worried about someone on the other side of the globe.


What benefit will there be? And why do you assume that it won't be accompanied by negatives? The problem with all tech is that people direct its use, and the sole agent of evil in this world is people.


> What benefit will there be?

Knowing your genetic information is currently of limited value for the majority of people, this I admit. I believe that in the future, however, the promise of precision medicine will be realized, and that having one's genetic information readily available will be crucial to receiving the best treatment possible for many diseases.

For example, take Crohn's Disease (and other inflammatory diseases more generally). The current thinking is that it is highly influenced by genetics, and that a number of different genotypes exist that can result in the phenotype we refer to as Crohn's Disease. It's conceivable that having a better understanding of someone's specific genotype could lead to more precise treatment of their condition.

> And why do you assume that it won't be accompanied by negatives?

I explicitly don't assume this, I said that the benefits will outweigh the drawbacks.

> the sole agent of evil in this world is people.

This is a specious argument. By that same measure, the sole agent of good in the world is also people. But that's irrelevant. Tech can be used both to harm and to benefit, and I'm arguing that personal gene sequencing can and will be used to provide more benefit than harm.


Yes, you did reference both, and I lost track in my response.

I expect a few relatively wealthy people to get some benefit, for example when they have real health conditions that can be helped by genetic knowledge. I don't expect benefit for the rest. Across the population, some will have net benefit, some will have net drawback, and it would be very easy for the second group to be an order of magnitude larger than the first.


Not everyone opted in as such. My wife has an identical twin who sent in a test.


Presumably neither you, your kids, or your wife, has grounds to sue them


You could try the old Monsanto/JohnDeere approach: copyright your own DNA then sue them under DMCA.


For a lot of people it is a health decision.

I go to a doctor, they have a ton of info on me. Who knows what might happen with that data ... but I still go to the doctor because it is a good idea for health reasons.


Didn't really feel like a random startup - felt like one of the most innovative startups around, backed by impressive investors including Google, co-founder married to Sergey Brin... So perhaps in hindsight sending DNA to anyone is a bad idea, but if there were a startup one might have trusted, this was it.


It was offered as a subsidized perk during my days as a Google employee.

The social aspect of other people at Google doing it made it feel normal.

In hindsight, I drank the Google kool-aid in more ways then one.

The sentiment of distrust towards tech companies and tech companies being yet-another-corporation is really only obvious in recent years. It wasn't the case a decade ago when we were busy being judgemental of Wall Street. Ironically, now it seems that Wall Street is more trustworthy because, at the very least, they are forthrite about their motive to make profit instead of all these lies about "changing the world".


Fear of the unknown about your own body. Think of how many people would sign up if you sold a service that scoured secret files to "find out what people are saying about you". Forget whether such a service could ever work, just the combination of "unknown" + "about you" is irresistible to a large segment of the population. It's the mother-of-all-clickbait.


Any other way to know the information they are offering? It is hard to own your own sequencing machine.


Spot on!




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