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This genetic data will be used by 3rd parties not (only?) altruistically but to maximize profits. Any products developed using this genetic data will likely hav

This genetic data will be used by 3rd parties not (only?) altruistically but to maximize profits. Any products developed using this genetic data will likely have profit as their primary motive. Wanting to accelerate the development of novel drugs and therapies to treat disease is great. But rather than giving a private company carte blanche to share data with third parties trusting (hoping?) that the outcome will benefit humanity, it would be better first to establish a sensible regulatory framework around genetic information and its uses by private companies and the governnment.

alexfromapex 7y ago
Can’t upvote this enough
killjoywashere 7y ago
> it would be better first to establish a sensible regulatory framework The new common rule provides for just such a thing called broad consent, which requires tracking patient consent in a fine-grained and revokable way. Interestingly, about the time it came into effect, I heard about a new start-up supported by George Church, called Nebula, which provides just such a consent service using a blockchain. So, the regulatory framework exists, and a product to implement that is on the market. And this stuff was in discussion for better part of a decade, so it's not like this just snuck up on people. https://blog.nebula.org/anonymous-sequencing/ https://blog.nebula.org/anonymous-sequencing/
travisoneill1 7y ago
Of course their motive is not altruistic, and what does it matter anyway? They won't make money if the outcome of the research isn't beneficial. What use would a bunch of government bureaucracy be?
- gowld 7y ago
  amp.cnn.com/cnn/2019/12/17/us/purdue-pharma-sackler-family-10-billion-withdrawals/index.html
marticode 7y ago
If curing and saving people has the side effect of some company making money, I think I can live with that.
- raven105x 7y ago
  Saving people is extremely profitable - curing, however, is anything but.
  - roenxi 7y ago
    Curing people is still profitable. If you are competing with an incumbent who only treats symptoms you can claim their business by curing patients. Unless somehow it were possible to gain a monopoly on curing people, which is plausible but fundamentally not the responsibility of the researchers.
    - kevingadd 7y ago
      Have you heard of patents? For-profit pharmaceutical companies use them to establish a monopoly on drugs they develop.
      - kungito 7y ago
        Patents last 20 years, humanity existed for thousands. We can wait 100 more years for cures if it's the optimal way
        autoexec 7y ago
        The drug companies have a solution to patent limits called "evergreening" where once a patent is about to expire they make a very slight modification to the formula, pump massive amounts of cash into marketing it as "new and better" even when there are little to no benefits over the old formula. Doctors are easily bribed or mislead into prescribing the expensive new formula over generics and drug companies can continue to make large profits on old drugs instead of innovating.
rawoke083600 7y ago
That's fine ! I'd probably get a better drug if the primary motive was profit rather than just "we care"...
malandrew 7y ago
Only someone who either doesn't have a treatable disease themself or doesn't have a family member who does could think this way. I have a medical issue with no cure and so does my dad. My mother died from cancer a few years ago. I could care less if they make a profit or not so long as it improves my quality of life and that of my father. For much of my mother's treatment, both the first time she got cancer (and beat it) and the second time (when she did not), she was getting treatment that only existed in the US. Why? Because it's profitable here. I myself take an orphan drug only available in the US and only developed because of changes like the Orphan Drug Act of 1983. Altruism is fine and good, but profit-seeking is more effective and expedient.
- vallode 7y ago
  I could similarly say only a person with a treatable illness who can afford said for-profit drugs thinks this way. 'profit-seeking is more effective and expedient' for the people that can afford it...
  - yostrovs 7y ago
    Only one secure and wealthy enough has the time and interest discussing matters like this. The poor and downtrodden don't even participate in these debates. Your privilege is getting ahead of you.
  - malandrew 7y ago
    > 'profit-seeking is more effective and expedient' for the people that can afford it It doesn't matter if you can afford everything in the world if the thing you need is never developed in the first place. Some of the treatments me and my family have had were not available in Europe, Canada and other universal healthcare countries at any price. I would have probably lost almost two decades of time that I got to spend with my mother because she got treatment in the US the first time she got cancer. She was British and at the time the NHS had the 2nd worst success rates for cancer of all OECD countries and the US had the highest success rates.

alexfromapex 7y ago

Can’t upvote this enough

killjoywashere 7y ago

> it would be better first to establish a sensible regulatory framework The new common rule provides for just such a thing called broad consent, which requires tracking patient consent in a fine-grained and revokable way. Interestingly, about the time it came into effect, I heard about a new start-up supported by George Church, called Nebula, which provides just such a consent service using a blockchain. So, the regulatory framework exists, and a product to implement that is on the market. And this stuff was in discussion for better part of a decade, so it's not like this just snuck up on people. https://blog.nebula.org/anonymous-sequencing/ https://blog.nebula.org/anonymous-sequencing/

travisoneill1 7y ago

Of course their motive is not altruistic, and what does it matter anyway? They won't make money if the outcome of the research isn't beneficial. What use would a bunch of government bureaucracy be?

gowld 7y ago
amp.cnn.com/cnn/2019/12/17/us/purdue-pharma-sackler-family-10-billion-withdrawals/index.html

marticode 7y ago

If curing and saving people has the side effect of some company making money, I think I can live with that.

raven105x 7y ago
Saving people is extremely profitable - curing, however, is anything but.
- roenxi 7y ago
  Curing people is still profitable. If you are competing with an incumbent who only treats symptoms you can claim their business by curing patients. Unless somehow it were possible to gain a monopoly on curing people, which is plausible but fundamentally not the responsibility of the researchers.
  - kevingadd 7y ago
    Have you heard of patents? For-profit pharmaceutical companies use them to establish a monopoly on drugs they develop.
    - kungito 7y ago
      Patents last 20 years, humanity existed for thousands. We can wait 100 more years for cures if it's the optimal way
      - autoexec 7y ago
        The drug companies have a solution to patent limits called "evergreening" where once a patent is about to expire they make a very slight modification to the formula, pump massive amounts of cash into marketing it as "new and better" even when there are little to no benefits over the old formula. Doctors are easily bribed or mislead into prescribing the expensive new formula over generics and drug companies can continue to make large profits on old drugs instead of innovating.

rawoke083600 7y ago

That's fine ! I'd probably get a better drug if the primary motive was profit rather than just "we care"...

malandrew 7y ago

Only someone who either doesn't have a treatable disease themself or doesn't have a family member who does could think this way. I have a medical issue with no cure and so does my dad. My mother died from cancer a few years ago. I could care less if they make a profit or not so long as it improves my quality of life and that of my father. For much of my mother's treatment, both the first time she got cancer (and beat it) and the second time (when she did not), she was getting treatment that only existed in the US. Why? Because it's profitable here. I myself take an orphan drug only available in the US and only developed because of changes like the Orphan Drug Act of 1983. Altruism is fine and good, but profit-seeking is more effective and expedient.

vallode 7y ago
I could similarly say only a person with a treatable illness who can afford said for-profit drugs thinks this way. 'profit-seeking is more effective and expedient' for the people that can afford it...
- yostrovs 7y ago
  Only one secure and wealthy enough has the time and interest discussing matters like this. The poor and downtrodden don't even participate in these debates. Your privilege is getting ahead of you.
- malandrew 7y ago
  > 'profit-seeking is more effective and expedient' for the people that can afford it It doesn't matter if you can afford everything in the world if the thing you need is never developed in the first place. Some of the treatments me and my family have had were not available in Europe, Canada and other universal healthcare countries at any price. I would have probably lost almost two decades of time that I got to spend with my mother because she got treatment in the US the first time she got cancer. She was British and at the time the NHS had the 2nd worst success rates for cancer of all OECD countries and the US had the highest success rates.