Comment by Ultimatt | Hacker News Reader

Comment by Ultimatt | Hacker News Reader

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Im curious why do you find that distasteful assuming there was a chain of consent somewhere in there. Data security is super important as are chains of unbroken informed consent, for using someones individual data in a study. But pharmas getting to see patient data is not something I have a problem with. If you want new cures for diseases how could you possibly have an issue with that? There is no law really stopping pharmas directly interacting with health providers, instead they choose these third party intermediaries because everyone has this unrealised "distaste" in their minds. What's distasteful about the institutions that produce cures having a clear view of the disease? Long term genetics is not even private data, once its cheap enough and portable enough there will be companies sequencing all humans from just the environment through metagenomics. What if you have a rare variant and I can see it at the local brothel as well as at a work place and at a home in large copy number. The future is Google/Facebook style of genetics regardless of what you think its going to be like. The sort of super strong blanket regulation required to block that would destroy any positive value of the technology. Your super secret data is only super secret right now because of a limit in technology and scope of the market. In 50 years genetic data will be as valued by people as their home address, especially as high value products become available for presenting companies with their data. I really dont have a problem with this. Smart watches are a larger existential threat to say insurance premiums for all of us.

I think the company disguising what business it is actually in is fraudulent and defeats the informed consent. If the transaction is actually to collect my genetic data for a database that will be sold for millions of dollars and eventually used to make billions of dollars selling drugs, then why am I paying a fee at all? I should be paid several hundred dollars for contributing my sample, with the cheap genetic testing thrown in as a bonus.

There's a company out of MIT working on this and using a blockchain as the medium for sharing your genome and medical information. Basically it would allow you to get paid for your DNA and choose to whom you want to sell it. I think there's another company that wants to treat your genome similarly and allow other companies to write apps that use it (same idea but no blockchain). It is kind of a chicken and egg problem though. You want the test to find out if you have something actionable/drug-able so you agree to give up your sample and related IP rights to get the result. The real issue though is that while the technology is developing and we are gathering a lot of information, there is nothing actionable except in a few limited cases.

> The future is Google/Facebook style of genetics regardless of what you think its going to be like.

I would rather die at 35 of a genetic disease than live my entire life in the dystopia you describe. If we need a Butlerian Jihad, so be it. The fact that so many in this thread take the opposite attitude is terrifying to me. As far as I'm concerned, genetic technology represents an existential threat.

Yes, it would be fantastic if we could take the good without the evil, but it doesn't look like we're capable of doing so. Nevertheless the attitude of many is that technology (and not just genetic tech) will march on, and damn the consequences.

Could you say more about how you expect this outcome would be harmful to people?

There is an ugly medical joke about a doctor castrating his patient to cure his headaches when it could have been cured by a larger pair of undies:

http://jokes4us.com/dirtyjokes/castrationjoke.html

Historically, IQ tests were frequently used to justify racism and anti immigrant sentiment. IQ tests are strongly influenced by things like culture, so outgroups typically perform less well on them.

You need to be very skeptical as to the mental models being applied to something you cannot currently change, like your genes.

I have a genetic disorder. I was diagnosed late in life. So I had been managing my condition a long time without a diagnosis and getting a diagnosis empowered me to get a lot healthier. I have been endlessly crapped on for talking about that online because people are sure it cannot possibly be true. This is where identifying someone's genes gets very dangerous because our current mental models frame genes as inescapable destiny and such widespread belief tends to become self fulfilling prophecy by cutting you off from other options.

One night years ago, I dreamed of someone with chains around their neck that they could not remove from that end. The solution in the dream was to break the chains at the other end in order to get free, though it would not entirely free them of the burden of forever carrying these chains around. They at least we're no longer trapped.

I interpreted this dream to mean that the chains are my DNA, which I cannot escape. But I can change my diet and lifestyle. It isn't a cure, but it beats the hell out of what conventional medicine has to offer me.

It is the equivalent of saying "No, thanks, doc. I will keep my nuts and go get bigger undies." And I live in fear of the possibility that someday I shall be told that getting bigger undies is not a valid choice and I must submit to castration for my own good and the good of the larger community. (metaphorically speaking since I don't actually have any nuts)

There would be new cures if they were available to the whole scientific community rather than locked away for profit.

Flatiron Health was just acquired by Roche for 2 billion dollars. A few years ago Flatiron purchased a company called Altos Systems and as a net result acquired an EMR and patient data for 20%+ of cancer patients in the US. A major part of Flatiron's business was de-identifying patient data and flipping it to pharma companies. They do contribute to some FDA studies and submit papers here-and-there, but the largest sources of income are the EMR and pharma, pharma, pharma.

Are you really comfortable with one company owning so many parts of patient care? I'm not.

> assuming there was a chain of consent somewhere in there

What if a genetic disorder is determined by screening close family (parents, siblings, first cousins)? Could an insurance company reasonably determine that the trait exists within the family, thus block coverage as a "likely" pre-existing condition? Or worse, force a person to be tested if they want coverage?

What are the odds those consent forms will have blanket permissions? Allowing for fishing expeditions.

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