I partially agree with your angle, however I don't understand the jump from how understanding disease and giving my DNA to a for profit company that may not fully be researching, but showcasing disease, removes "barriers to science". Care to expand?

If not for 23andme, who would have created a comparably big database of SNPs? I dont understand what showcasing disease means.

I know we are all good people, but most of novel science happened with methods that we would find totally unacceptable today, from lobotomizing people, to deafferenting cats, to sending dogs to space. If 23andme didnt have established a large user base, it would be impossible to get a comparably big database given today's regulations (and climate).

> I dont understand what showcasing disease means.

What I mean is you pay 23andme money, they showcase your genetics which, as I understand it, include lineage, risk of disease, etc. 23andme isn't akin to a blood panel in my mind. At least not at this point since they sell on other marketing aspects that are far more consumer oriented.

> I know we are all good people, but most of novel science happened with methods that we would find totally unacceptable today, from lobotomizing people, to deafferenting cats, to sending dogs to space. If 23andme didnt have established a large user base, it would be impossible to get a comparably big database given today's regulations (and climate).

I don't agree with this. You're conflating lobotomy and, again, a for profit company that is collecting a massive database of DNA as we speak and all of the use cases are not yet defined. There is a significant difference between scientific research and running a for profit company. If we can't agree the motives between those two things are different then that is the clear disconnect. Swap out your analogy with Google or Facebook. Are we all glad they have established a large user base? I'm not. And just like those companies it may be that you may think 23andme having your data today is a good thing but that could change quickly when your data is sold for different intentions later on. Do you agree you may not always hold that perspective? What if 23andme starts to sell data to insurance companies after they lobby away having to cover preexisting conditions and then buy your user data to deny you coverage?

I actually view 23andme as a way to extract a bunch of SNPs cheaply. Nowadays it is commonplace and cheap but back then it was difficult. They let you download your data, they provide lineage reports, and can help you find distant relatives. Their health reports (risk associated with specific locations) are not allowed in most of europe. The good thing about 23andme is that there are millions of people genotyped now who can contribute their dna to open research databases. Some related companies have sprung up based on these data like GEDmatch , and promethease (which offers health reports even to europeans).

As for the privacy concerns i have a bit different views. I think it s debateable whether DNA is intellectual property of its owner and whether it could be protected as such. Very few humans can claim that their DNA information is the output of their labor, and it is very highly shared among humans, so there should be a discussion to what extent genetic information should be subject to fair use. Having widely available open datasets would reduce the value of these big centralized databases.

You've gone down Conflation Rd. again. DNA being "intellectual property" has nothing to do with privacy in this case. But having access to someone's DNA means their privacy can be more easily compromised. As others have pointed out your DNA also associates your relatives. While I can grasp the good, a DNA treasure trove like 23andme has will be used illegitimately at some point. We've been to this dance before and we know what it looks like when the music stops.

You do realise that there are plenty of others working on this for research? A good example is the UK Biobank, http://www.ukbiobank.ac.uk/about-biobank-uk/

Surely there are but the span seems to be much smaller (500.000 vs 23andme's 10M)

And it 's not like they lock-in your data, you can export them to contribute to other studies if possible.

UK Biobank has a smaller cohort but deeper and more reliable data.

All UK Biobank participants were tested for blood pressure, bone mineral density, grip strength, BMI, etc. The last 200,000 participants underwent detailed tests of cognitive function [1].

23andMe asks customers for health information, but self-reports are not usually as reliable as the clinician-administered tests done in UK Biobank.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6451771/

I guess it's analogous to the pros/cons of allowing software to send crash reports... Withholding your data protects your privacy and prevents abuse, but it also causes your problems to be underrepresented in a public data set, which makes it less likely they will be addressed.

> Disease and aging should be our number 1 priority

Humans are ballooning as a species and hurting the planet and causing other species to go extinct... and you want to eliminate disease and aging from said species?

Of course agent Smith. What better way to exterminate the wretched human species than to make it die of overpopulation?

Second derivative of population is negative.

I understand the point of view that preserving species is a moral good, but it is just one of many possibilities and could very well be wrong.

Only specific sub groups are doing that:

https://www.populationpyramid.net/static/population-projecti...

Or to be specific, Africa and West Asia, due to a lack of access to contraception. That can be solved by redirecting 100% of aid towards education, contraception and abortion for women, and away from food aid.

Your proposed solution may sound unorthodox, but it's an interesting view on how to solve the problem in the long term. Although I don't think it will be viable politically nor socially accepted.

I, for one, am glad my data is not in there.

Our government and insurance systems are shitty, and until they are fixed, disease and aging won't be our number 1 priority.

Even individually, our DNA is probably worth a bundle to many companies. To me, my DNA is as near priceless as something can get. I'm glad I didn't pay someone to take it.

The profitable, yet dystopian uses of this information are potentially limitless (see the most recent thread about how the Nazis used IBM technology), but the regulations are negligible to non-existent. I'm more than happy to not be one of the victims of these uses for whom laws and regulations are made after-the-fact, if they're made at all.

This definitely underscores the point that government is not too big. If government regulation we’re keeping the markets free and efficient then DNA and personal data would be considered a good or service owned by the individual.

Needing better regulation in this area doesn't seem to me to conflict with making government smaller. If the government is wasting resources (and it is), then it can do both.

I truly only care about the non-renewable resources it over uses. The economy alone will never ensure everyone has enough to live on its own. If that were the case then the US government wouldn’t be the number one, singular employer in the world. (Or whatever the qualification is.)

If this data was hacked, and your genetic information became public, would you feel the same way?

My genetic and biometric information is already in some government's databases, sometimes with more actionable information than "elevated risk of restless legs syndrome". Associating a list of 500K SNPs with my name would bother me but not that much really. It would take a lot of work to make use of it anyway and i cant think of a reason this would harm me gravely(+). Anonymized information of my DNA would bother me even less, as i m not more exceptional genetically than most people. Tbh, this is not my information, i share DNA with most of the species on earth and i didn't really create that information (unlike, say my google searches), nor did my parents. Thats why i oppose to genetic patents too, and think that DNA should be public domain.

(+): Well if someone wants to engineer a deadly virus that targets specifically me, then what can i say , that's at least a memorable way to die. But they can do that from a piece of my hair too.

Honest question - why does it matter? Can they get access to my bank account with that info? My email? Can they impersonate me? How is it different than someone taking my picture?

Don’t I leave a trail of DNA everywhere I go anyway, from shedding dead skin cells?

Yes, an adversary could target you and illegally collect your DNA. But does that mean you should make it easy for them and publicize the data?

There are very serious reasons to keep your genetic information private [0]. Unlike a photo, genetic data reveals sensitive medical information and more...

[0] https://youtube.com/watch?v=HKQDSgBHPfY

Not GP, but personally I do not mind. I have voluntarily shared my DNA information with a number of people.

Health insurance is not important here (UK), and life insurance is much less of an important concern to me as I will not have children. But I can see why if that is not the case, you would be more concerned.

I do have some concerns about it being used by the police, though public availability is unlikely to make a difference there. I've never committed any crimes, but the police are known for using scientifically and statistically invalid methods to prosecute.

And if an employer decides to use your genetic information to discriminate against you, how would you know?

Also, in 10-20 years, what if new threats arise?

I am sorry, but I do not understand this.

If it's valid trait that employer (or insurance) finds actually having negative impact - is it really a discrimination (other than you can't really say whether it's expressed).

In the US, it is illegal for an employer or health insurance company to discriminate based on genetics [0]. But if you fail to receive a promotion because your employer found out about your genetic disease, how would you know?

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

> how would you know

Same way you get to know your KPI's and other assessments?

I guess that act is good after all. No one can tell you've got an actual disease from these tests, even if on big scale the correlation most obviously is there.

Nice fantasy world to live in, where disease an aging are our number one priority and the insurance system is fixable.

Why not fix both of those things first before feeding our personal data into a fundamentally broken system?

I fully agree, but I think that is easier said than done.

It is conceivable that this would require massive amounts of money to lobby politicians and inform the public of an issues that most people don't give a shit about (Hell, people are so scientifically averse that vaccination is still a significant issues in 2019).

What makes this even more challenging is that there are parties whose interest is to exploit that information for their personal gain rather than helping the individuals with that DNA (e.g. insurance companies, government agencies, etc.). Those parties likely have access to more money and are more capable of lobbying and propagandizing for their interests.

No great advancement comes without dangers. But at the moment we seem to be stifling the benefits while allowing government surveillance to go through "for the good of society".

I agree. I wasn't implying that we should make DNA sequencing and storage illegal.

How about we fix it before putting people at massive risk of harm, and risk poisoning the well on genetic research forever?

right, i dont see anyone arguing for that in here though