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Can DIY Science Speed Innovation?

Posted By Jonathan Noel, Tuesday, May 13, 2014
I have a problem.  An addiction really.  There is a library bookstore that sells cheap used or donated books.  Most of the books are pretty new or maybe read only a couple of times.  In any case, it is the only place where I just buy as many books as possible (It usually averages $1 per book).  I bring this up because I picked up a book on do-it-yourself science, a movement that wants to bring bench-top science into the community and find ways around the big business approach to healthcare solutions.

Reading through it, I realized that I've actually witnessed the problem with big business science first hand.  I was part of a research collaboration that was developing a cancer vaccine.  Our group was tasked with finding vaccine targets while a second was supposed to supply the vector to deliver the vaccine. (There was a 3rd group too but I have no idea what they were doing.)  It turned out that they vector this other group developed was innovative enough for them to file a patent and receive a patent for their work.  But once they received their patent, big business came calling.

We learned about this group's business relationships when we realized they weren't providing any of the grant deliverables that had been promised.  It turns out they sold the rights to their vector patent to a pharmaceutical company for hundreds of millions of dollars, $300 million if I'm not mistaken.  While they are financially set for life, it set our research back by a year or more.

In the DIY science world, this wouldn't be an issue.  Information would be freely shared.  It would be an open-source science world in the exact same form as open-sourced software (that's how Linux and Firefox were developed).  This part of the movement is very intriguing to me.  If a discovery, a truly groundbreaking discovery, was available to anyone, not just those who can afford it or have really good insurance, it would change health, healthcare and public health as we know it.

But the part of DIY science that makes me hesitate is that it is happy to function outsite of regulatory control.  One chapter talks about a man who has created a personalized pharmaceutical company, whereby treatments are tailored to each individual, and it appears he is proud of the fact that no regulatory agency can shut him down.  In essence, he is running multiple, simultaneous clinical trials, all with n = 1 subjects.  There is no regulatory approvals for the treatments.  There is no informed consent and there certainly isn't approval from an institutional review board.

I would fully support science being more open, less hidden behind the walls created by patents or investors' bank accounts, but there needs to be some regulation.  There needs to be some system in place to protect the safety of people who are sick, want to be healthy, and may be desparate.  DIY science has the potential to push healthcare forward by leaps and bounds, just like open-source software did to the computer industry, but its results will have to be tempered. 

Still, I hope they find something big.  It could be the next transitional moment in health science.

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