I am for one glad my data is in there. Disease and aging should be our number 1 priority. If your governement and insurance systems are shitty and spy and exclude people, you should fix that instead of putting barriers to science opportunity.
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).
And it 's not like they lock-in your data, you can export them to contribute to other studies if possible.
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.
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?
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.
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?
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.
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.
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.
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.
Also, in 10-20 years, what if new threats arise?
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).
[0] https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
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.
Don’t I leave a trail of DNA everywhere I go anyway, from shedding dead skin cells?
There are very serious reasons to keep your genetic information private [0]. Unlike a photo, genetic data reveals sensitive medical information and more...
(+): 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.
Why not fix both of those things first before feeding our personal data into a fundamentally broken system?
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.