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Opening science for patients

Ben Stecher on why researchers have a moral obligation to share data

Since being diagnosed with Parkinson鈥檚 disease (PD) six years ago at the age of 29, Ben Stecher has learned a lot about not just PD, but medical science in general. One thing in particular he鈥檚 learned is just how long it can take to develop effective therapies. In the case of PD, there hasn鈥檛 been a major breakthrough since L-DOPA was discovered in the 1960s.

Stecher has become a patient advocate in a field where the complexity of the science often shuts out anyone who doesn鈥檛 have a PhD. He travels the globe, meeting lead researchers, visiting labs and giving presentations on what it鈥檚 like waiting for new therapies that never seem to materialize.

One thing he finds particularly frustrating is overspecialization and insular thinking. Neuroscience is a complex field and researchers must have an in-depth understanding of specialized topics, but collaboration amongst different specialists can lead to important discoveries.

鈥淲hat happens often is that they become entrenched in a certain way of thinking because of that expertise. While it's a great thing and while it helps them take that expertise to its fullest extent, it also kind of creates blinders, like saying 鈥榯his is what we're good at, so let鈥檚 do this,鈥欌 he says.

鈥淲e need to start integrating various fields together and start integrating all the knowledge that we built up over time so we can have more comprehensive picture of the disease and the research landscape.鈥

Stecher blames insular thinking in research on a combination of factors. It鈥檚 a competitive field and sometimes professional priorities get in the way. There are many incentives to guarding data and hoarding as much credit as possible.

鈥淐ollaboration requires not only people putting aside their personal interest but their own personalities and their own egos to some extent to try to work towards the greater good. It鈥檚 almost antagonistic to human nature to some degree. I mean we鈥檙e very much self-interested creatures, and we've gotten to where we are because of our desire to kind of promote our own selfish needs and there's nothing inherently wrong with that. But if we really want to develop as a society, it's going to require going to that next stage, which is really each person working towards the interest of the greater good.鈥

Institutes can incentivize data sharing and collaboration, Stecher says. He points to The Neuro鈥檚 open science initiative as an example of a step in the right direction.

鈥淚'm grateful The Neuro has taken it upon itself to step in and make this a priority,鈥 he says. 鈥淥pen science for me comes down to putting the interests of society, and in this case patients, above the interests of individual careers. I mean a lot of science gets done for either self-interested reasons or also just to accelerate the development of new knowledge, and while the mandate of science is to progress our understanding of nature and who we are, there are also more pressing issues and better ways to integrate all of the information that's being produced.鈥

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The Neuro (Montreal Neurological Institute-Hospital)听is a bilingual academic healthcare institution. We are a听黑料不打烊 research and teaching institute; delivering high-quality patient care, as part of the Neuroscience Mission of the 黑料不打烊 University Health Centre.听We are听proud to be a Killam Institution, supported by the Killam Trusts.

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