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tovli
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Ethics Concern - HealthCare Spending Effects

For some time now, I have worried that my Zika and COVID work packages might be helping the pharmaceutical industry to create expensive new drugs that will end up raising my health care insurance premiums. The recent FDA clearance of a new Alzheimers drug with questionable efficacy, only increased my paranoia of being suckered by the health care industry.

With IBM backing WCG, it seemed plausible that WCG was not a way for IBM to leverage their investment profile for profit. Having one of the United States (Update) "North Ameria's largest health companies" take over WCG, just raises my suspicions even more.

I've been a WCG churner for sixteen years. I'm really questioning if I will make that 17.
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[Edit 1 times, last edit by tovli at Sep 14, 2021 4:13:12 AM]
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Jurisica
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Re: Ethics Concern - HealthCare Spending Effects

First, Krembil Research is not a US-based healthcare company. (Krembil Research )
Second, the goals of open data and open science continue to be valued and supported by WCG.
Third, our ambition is to continue and expand WCG mission - and we will need even more volunteers to help - to ensure citizen science will make a difference.

thank you
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yoerik
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Re: Ethics Concern - HealthCare Spending Effects

tovli - the University Health Network, the parent of Krembil Institute, is a registered non-profit.

They are not a private pharmaceutical company. They are not a drug maker, who will use WCG as a free tool to research extraordinarily expensive drugs. The organization runs several major hospitals in Toronto - all of which are under Canada's medicare system, and are renouned for their research and treatments.

UHN and/or the Krembil Institute, one of UHN's research institutes, has been involved in the Grid since 2007 with Help Conquer Cancer and Mapping Cancer Markers.

If there was anyone you could trust with securing the grid's future, Krembil and UHN are excellent choices.

I understand, under US' healthcare system, the idea of a healthcare organization could raise alarm. That is not the case here. Krembil and UHN are not a shack up in the middle of nowhere, nor are they a corporate stooge who will turn WCG into a project of greed - they are a well known, world renowned organization filled to the brim with scientists, researchers and doctors - among Canada's best.

If a direct comment from Dr. Jurisica, the new leader of WCG, committing to continuing open data and open science doesn't alleviate your concern, I'm lost as to what will.
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[Edit 2 times, last edit by yoerik at Sep 14, 2021 1:16:28 PM]
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Tomahawk4196
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Re: Ethics Concern - HealthCare Spending Effects

I think the original poster tovli is not necessarily concerned that Krembil will take the free research and use it to create a new patented drug - my understanding is that he is concerned that 'open' research can be used that way by any of the for-profit pharma companies.

Is tovli correct?

If so, is there any way to limit the 'open' nature of the results, so that only non-profits can use them (unlikely)? Or, if a for-profit company does use the research to invent an expensive drug, can they be obliged to re-direct a percentage of the resulting profits to help support more of WCG's/Krembil's efforts, for the duration of their patent? "Open" doesn't automatically mean 'free'.

Thank you
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[Edit 1 times, last edit by Tomahawk4196 at Sep 15, 2021 11:45:46 PM]
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yoerik
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Re: Ethics Concern - HealthCare Spending Effects

I think the original poster tovli is not necessarily concerned that Krembil will take the free research and use it to create a new patented drug - my understanding is that he is concerned that 'open' research can be used that way by any of the for-profit pharma companies.

Is tovli correct?

If so, is there any way to limit the 'open' nature of the results, so that only non-profits can use them (unlikely)? Or, if a for-profit company does use the research to invent an expensive drug, can they be obliged to re-direct a percentage of the resulting profits to help support more of WCG's/Krembil's efforts, for the duration of their patent? "Open" doesn't automatically mean 'free'.

Thank you

Given the wording of the original post, I don't believe this interpretation to be accurate.
With IBM backing WCG, it seemed plausible that WCG was not a way for IBM to leverage their investment profile for profit.

I think it's quite clear that OP believed that Krembil was a North American "Healthcare Company" - not a non-profit research institute.
As for your question - I'd have to suggest that you pass it along to the Q&A thread, as it isn't really productive to debate the question without more information on the Grid's feelings on the subject.
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nei1
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Re: Ethics Concern - HealthCare Spending Effects

My hypothesis:

A criticism of the corporate pharmaceutical industry is that they research, create, and patent a new chemical, and then market an expensive drug that no one may recreate, since it's been patented.

Any new chemical discovered by WCG could be used by someone to produce a new drug, and perhaps they will charge an exorbitant price. But the original research -- WCG's discovery of a new efficacious chemical -- is still open source, not protected by patent, and a new product based on the WCG findings are immediately subject to market competition, in stark contrast to the patented scenario. Competition will not allow "exorbitant pricing" to stand very long.
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[Edit 1 times, last edit by nei1 at Sep 16, 2021 8:24:41 AM]
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Falconet
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Re: Ethics Concern - HealthCare Spending Effects

I think the original poster tovli is not necessarily concerned that Krembil will take the free research and use it to create a new patented drug - my understanding is that he is concerned that 'open' research can be used that way by any of the for-profit pharma companies.

Is tovli correct?

If so, is there any way to limit the 'open' nature of the results, so that only non-profits can use them (unlikely)? Or, if a for-profit company does use the research to invent an expensive drug, can they be obliged to re-direct a percentage of the resulting profits to help support more of WCG's/Krembil's efforts, for the duration of their patent? "Open" doesn't automatically mean 'free'.

Thank you


While I also don't think this was tovli's point:


-Limiting the open nature of the results would severely reduce the already low chance of the raw and non-raw data crunched at WCG actually mattering.

-As to your other point, of Krembil/WCG getting some financial support from a pharmaceutical company over a possible drug/diagnostic method/cure/whatever that originated with WCG data, I think the best way of that happening is with a partnership between whatever research institute behind the project and a pharmaceutical company/biotech in order to develop the drug, etc.

The best possible outcome of a WCG medical project is to find a treatment/cure/diagnostic method and getting that into use, which hasn't happened yet. To be honest, a partnership with a pharmaceutical company with the funds and the will to develop that is the best chance.
And even that has a very low chance of happening. Look at SCC - I think it's been 7 years or so since they announced they had 7 good compounds and that they needed and were looking for a pharmaceutical partner to further develop that. It hasn't happened yet.

Rosetta@home/Institute of Protein Design (IPD) - In January 2019, they published a paper on Neoleukin-2/15, now known as NL-201 - a cancer treatment. Rosetta@home didn't design it but it helped validate the design. NL-201 entered a Phase I human clinical trial back in early May 2021. How? A startup pharmaceutical company called Neoleukin Therapeutics was created by some guys including the scientist who led (I assume he led) the Neoleukin-2/15 research at the Institute of Protein Design and raised capital so they could move it forward. Will it be sold as an expensive drug? I have no idea, I hope not, but I want drugs to help people.

Nowadays, the same company is also running a Phase I trial on a COVID-19 vaccine that was also developed at the Institute of Protein Design. The same vaccine is also on Phase III trial run by a South Korean pharmaceutical company. According to the lab at the IPD that originally created the vaccine, it will be distributed via COVAX, assuming it gets approved. In case you are wondering, the IPD licensed the vaccine at a non-exclusive and royalty-free regime to those two companies.
Was Rosetta@home involved in this vaccine? I don't recall anything related to vaccine research during the COVID-19 work but the Rosetta@home twitter account says "The COVID-19 projects on our platform are headed into human clinical trials! Our amazing online volunteers have played a role in the development of a promising new vaccine as well as candidate antiviral treatments. " Of course, they also said that none of the Rosetta@home antivirals designed AT Rosetta@home were on the first paper they wrote and on which subsequent research is based on, so I have no idea. But I guess that since we helped run lots of work, including identifying millions of mini-proteins that didn't work, we contributed in that way so the statement makes sense regarding the antivirals.


Anyway, my point is, if a non-profit institute with the capacity to develop a drug or whatever can get on a partnership with a research team that ran a medical project at WCG and ended up finding something that warrants further study, then great, awesome. But I don't think we should exclude for-profit companies. A partnership either way is the best way to go. I have no problem if for example, SCC announced a partnership to develop their compounds with a for-profit pharma. Or the OpenZika project and their lead "FAM 3" compound or any other project.

Just my opinion.
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[Edit 1 times, last edit by Falconet at Sep 16, 2021 11:31:06 AM]
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Falconet
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Re: Ethics Concern - HealthCare Spending Effects

My hypothesis:

A criticism of the corporate pharmaceutical industry is that they research, create, and patent a new chemical, and then market an expensive drug that no one may recreate, since it's been patented.

Any new chemical discovered by WCG could be used by someone to produce a new drug, and perhaps they will charge an exorbitant price. But the original research -- WCG's discovery of a new efficacious chemical -- is still open source, not protected by patent, and a new product based on the WCG findings are immediately subject to market competition, in stark contrast to the patented scenario. Competition will not allow "exorbitant pricing" to stand very long.



I think that's a good point. It is very likely that the original molecule would be modified by any development process in order to improve molecule stability once subject to the metabolism of the human body (in the liver, mostly, I guess), efficacy, etc. The original molecule and the final molecule would have a different chemical composition.

I'm not a lawyer but if a pharma company used the said original molecule to develop an improved version of it, they could patent that improved version. But if another pharma company develops another drug based on the same original molecule, they could also do so as long as their final improved molecule is different from the one developed by the first company.

Basically, one can't patent the original molecule but they can patent the development process and the final version of the original, open-sourced molecule: A (original molecule found by WCG) is free to use and modify and whatnot, but A1 (developed by pharma 1) and A2 (developed by pharma 2) can be patented. Ultimately, the same basic drug with the same purpose is developed and there is competition between the two. Anyone else would still be able to develop yet another drug based on the original molecule.

I think that makes sense, but again, I'm not a lawyer. Or a scientist.
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Tomahawk4196
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Re: Ethics Concern - HealthCare Spending Effects

A 'partnership' with an individual pharma company would then likely exclude all others, limiting potential development.

Huge money causes huge corruption, so anyone's reliance on 'competition' keeping prices reasonable is a leap of faith at best.

If the data generated by our distributed computing efforts is treated like 'open-source' software, it could be licensed, such that folks in academia could use it free for further research, but if someone makes money from it, they need to compensate the source of the valuable information. A variation of the GNU licensing scheme could be employed.

When something is given away freely, many believe it has no value. Is anyone aware if pharma companies even know about WCG? Or do they silently rely on the negative results, to learn what not to do?

With the change in management being discussed in this forum, now is a good time to reexamine and tweak the 'open' nature of the data we are generating. Adding a clause to ensure fair recompense would not slow down research efforts in any way, it would only serve to help protect the value of our many computer-decades of effort.
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