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Category: Completed Research Forum: OpenZika Thread: Question the ethics and legitimacy of this project for BOINC |
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Aegeon
Cruncher Joined: Oct 9, 2011 Post Count: 10 Status: Offline Project Badges: |
I shall wait a short while to see further comments. If they go to show that the ZIKA science project is being sponsored by a for profit organisation then I will deselect this science. I donate my computer time for altruist reasons, so only completely open and non profit sciences. By that apparent criteria you should basically never support a medical project period because someone could ultimately develop a drug based on the discoveries published and then make money off it. The same would be true of the Harvard Clean Energy Project since a private company could develop and start selling solar cells using information created by the distributed computing project. (In either case there would be allot of wet lab work/clinical trials or practical testing and development before the drug or solar cells would hit the market.) A key detail here is that it doesn't seem plausible all the other university researchers involved here would agree to a situation where Collaborations Pharmaceuticals gets to hold onto results for a truly extended to period of time which would potentially delay development of the drugs to further the company's own commercial interests. For that matter, it makes zero sense that IBM would agree to support such a situation given the negative PR that could be generated from their involvement and the reality that they are not a company producing medical drugs so the idea they could somehow make enough money to compensate for the bad pr with a stake in the drug revenues is not plausible. One other key detail is that in the case of Zika, if a company tried to jack up the price too much, countries such as Brazil simply would refuse to pay it and would basically declare the patent invalid and produce the drug on their own. (With confidence that public opinion including in the US among other countries would be on their side.) Fundamentally you may not like the commercial role of companies in taking early medical research and establishing drugs as viable and safe through clinical trials and the like, but this is simply the reality of how things currently ordinarily work, although there is nothing actually preventing some sort of non-profit or the like ultimately developing the Zika drug treatment in this particular case. [Edit 2 times, last edit by Aegeon at May 23, 2016 2:27:25 AM] |
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hiimebm
Senior Cruncher United States Joined: Oct 19, 2014 Post Count: 305 Status: Offline Project Badges: |
Glad to see legitimate debate going on here.
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
OK I hope the following can at least clarify a few things raised in these posts and give you a better idea of where I come from and why I am involved.
Yes I am CEO of Collaborations Pharmaceuticals. I am also CEO Of Phoenix Nest, Inc (a rare disease company - look that up http://www.phoenixnestbiotech.com/ - I started that with a parent of a child with a fatal disease that affects only a handful of children), I am also CSO of the Hereditary Neuropathy Foundation ( A rare debilitating disease that cripples and ultimately shortens the life of thousands of people and for which there is no treatment http://www.hnf-cure.org/ ), also CSO of Collaborative Drug Discovery Inc. (https://www.collaborativedrug.com/ a software company focused on developing software for academics and companies to collaborate - my work has focused on Tuberculosis (TB) Chagas and other neglected diseases). All of these things mean a lot to me, they are diseases that impact my friends or their children. If I had one ounce of financial motivation I would be working on large diseases or be in a different career altogether. Frankly I would not change what I do if you offered me that opportunity :) Like my collaborators on this and other projects we work hard, we are fortunate to have jobs but are passionate about science 24/7. I barely see my kids, but we are also v. fortunate that we are not having to face terminal or chronic illness for which there is no treatment. Currently Collaborations Pharmaceuticals as a company is just me, I founded it, I funded, (no VC, no grants, my only income is from from all the other jobs / consulting I do). Yes I have lots of collaborations, many of them with academics because thats what I have been doing for a very long time. That's what I do, I collaborate, I publish with them, very rarely do we find something to patent, and in some of the most recent cases I have waived my patent rights to projects. I started working on Zika because as I have explained in several blog posts (www.collabchem.com), I felt challenged in Jan to do something after discussing with a close friend Antony Williams (a big open science advocate, long time collaborator and EPA employee). I have several friends/collaborators in Carolina and Jair (who are Brazilian) and I really wanted to do something to contribute to drug discovery for the disease as all the discussion was on vaccines. (BTW I also have not done any work on vaccines , yet). Modern collaborative research works through companies collaborating with academia (how many drugs came from academia, were developed completely by them and commercialized by them?? - probably none since the 1940s). The NIH and US govt actively promotes such collaboration (e.g STTR funding requires companies and academics to collaborate in order to be eligible for such grants) - so there is nothing wrong or illicit with such collaborations. That is also the goal of public-private partnerships which I have published on and participated in. For example I have been a member of a consortia on TB called MM4TB which had many academics, small companies and big pharma involved. The goal being to find cures for the disease. I have therefore been working on Zika since before this WCG project, already openly published on it with Carolina (http://f1000research.com/articles/5-150/v1 http://f1000research.com/articles/5-275/v1) and submitted compounds to NIAID based on previous Ebola work to see how their testing works and finally, I already submitted grants to NIH on Zika (who knows how they will be scored). None of this work was derived from WCG or supported by them. The odds of any of this leading to anything commercially viable is slim. Carolina is leading the WCG project (PI) and I am not PI. I see my role as helping as needed in selecting compounds for testing at other collaborators and assisting as I can and raising awareness. We will make data open very quickly when generated - I do not anticipate this group will sit on the data as there is really no reason too (ultimately that is Carolina's group's decision). IP will be derived led by groups that do testing (if they find something), then it's upto their tech transfer groups to license.. I do not think I have any advantage there as I am a v. small company and I have no lab or way to test compounds myself. In fact I am at a distinct disadvantage. I personally don't think the fact that I come from a company should stop me or anyone from having an idea (like OpenZika) or volunteering my time and effort to do something for the public good. My motivation is purely see if we can use the WCG to help find drugs. Getting someone to take a molecule for Zika to the clinic and commercialize is a whole different challenge. If needed I will do it but do you see any big pharmas going after Zika drugs ? No .. vaccines yes, but they may take years.. There has been research on HIV vaccines, TB (bacteria) and Malaria (parasite) vaccines are still far from approved after decades too. The financial incentives to go after neglected diseases like Zika are therefore tiny and that is a problem if you want companies to work on a disease in the 21st century. Yes, we no longer live in the good old days when companies basically did everything and drugs were affordable. That unfortunately is currently way out of my control. I see the only way anyone else can make any money out of Zika is by getting grants (a small % of the money just made available in the US) and that's just paying for our time and resources needed to pay others to do testing. This is not a money making exercise. I am very fortunate that Carolina and Alex have agreed to volunteer their time as well to get this off the ground - without them this would not have happened because as a company I could not have done this WCG project. That was clear from the outset. I had the idea and the motivation but Carolina and Alex have the facilities and expertise to make this happen. Please support us as we and our collaborators try to identify drugs active against Zika ASAP. We need YOU! |
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toss
Senior Cruncher New Zealand Joined: Jan 3, 2007 Post Count: 220 Status: Offline Project Badges: |
Please support us as we and our collaborators try to identify drugs active against Zika ASAP. We need YOU! As you will notice the critics are very few. Certainly the amount of work getting done indicates there is no significant or wide spread mistrust. You have my support and I believe that of the vast majority. |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Thank you I am also happy to answer any questions raised. We hope to do a Reddit AMA at some point too..I can also be contacted on Twitter, LinkedIn or by email..
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Please support us as we and our collaborators try to identify drugs active against Zika ASAP. We need YOU! As you will notice the critics are very few. Certainly the amount of work getting done indicates there is no significant or wide spread mistrust. You have my support and I believe that of the vast majority. Thank you for the comments, I am grateful that there has been debate (mainly in favour of continuing) this includes the statement from ekinssean setting my mind on more informed solution to my original query. I am glad to carry on donating time to ZIKA science, here's to finding a solution sooner. |
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KLiK
Master Cruncher Croatia Joined: Nov 13, 2006 Post Count: 3108 Status: Offline Project Badges: |
Thank you I am also happy to answer any questions raised. We hope to do a Reddit AMA at some point too..I can also be contacted on Twitter, LinkedIn or by email.. thank you for taking a time out to answer our questions...even though in some other previous topics some of us (myself included) asked some hard questions, we didn't find so many answers to those! that lead us to abandoning donation of time & resources to that project...but those are the consequences of doing something "shady" & not being accountable for their actions! you have persuaded me to keep crunching on OpenZika projects, at it's going to be an "open source" project...looking forward to see the results soon! |
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
Please support us as we and our collaborators try to identify drugs active against Zika ASAP. We need YOU! As you will notice the critics are very few. Certainly the amount of work getting done indicates there is no significant or wide spread mistrust. You have my support and I believe that of the vast majority. Voicing legitimate concerns and asking for clarification isn't criticism it's asking for clarification - even though on certain key areas nothing was forthcoming. If you're content then good for you, personally I'm out. |
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nanoprobe
Master Cruncher Classified Joined: Aug 29, 2008 Post Count: 2998 Status: Offline Project Badges: |
Voicing legitimate concerns and asking for clarification isn't criticism it's asking for clarification - even though on certain key areas nothing was forthcoming. If you're content then good for you, personally I'm out. I think it's safe to say that any project run here looking for disease cures/treatments will eventually have some kind of commercial application if one is found from our efforts. Pharmaceutical companies don't manufacture/distribute for free. If you're against Zika for that reason why are you not also against MCM, UGM, FAHV etc. etc?
In 1969 I took an oath to defend and protect the U S Constitution against all enemies, both foreign and Domestic. There was no expiration date.
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Former Member
Cruncher Joined: May 22, 2018 Post Count: 0 Status: Offline |
If there are any points I missed responding too please let me know. I am new to this kind of forum
I tried to focus on my background etc..I have plenty of information about what I do on the web as well if you need more info on my research/ collaborations etc. Most of the companies I have worked for have Collaboration in the title. Drug discovery in this day and age is impossible to do any other way and it still costs money. If the WCG efforts could identify a drug for Zika or any other disease I think it could fundamentally shift how we do drug discovery. Over the last decade or so there has definitely been a shift to more open research, but even this will not result in free drugs. Someone has to make, market and insure them. I hope this provides more detail. |
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