Rachel Harding is putting it all out there.
Harding, a biomedical researcher in the University of Toronto’s faculty of medicine, is the first to blog and share her data, notes and experiments in real-time. Her motivation is simple — she hopes her approach will lead to faster discoveries in a devastating fatal genetic disorder.
“It’s going to be very honest and very raw, not like a polished documents or presentation at all,” Harding told Global News.
Harding is searching for clues in Huntington’s disease, a neurodegenerative genetic disease, that causes nerve cells in the brain to malfunction and die. There is no cure for Huntington’s disease — just a cruel deterioration.
“It’s pretty much equivalent to having Alzheimer’s and Parkinson’s at the same time,” Harding said, “There’s nothing out there to really help these people.”
Scientific research is a competitive field. Some researchers guard information — pressure for funding, prestige or contractual agreements — can keep research behind closed doors.
“Around the world you have pockets of researchers hungrily and busily working away on the answers but they don’t share their data,” Aled Edwards, a medical biophysics professor at U of T, told Global News. “That is a tremendously bad idea. Especially if one of the discoveries would have led to some treatment or cure.”
“I am opening myself up to critique from researchers all over the world so we are hoping this will inform better experiments, so we can get to these answers more quickly.,” Harding said.
In order for Rachel to be so public, her university and the foundation that funds the research had to agree – which they did. Both believing in open access research.
Edwards is the director of U of T’s Structural Genomic Consortium (SGC) where Harding is a post-doctoral fellow. He calls her move daring and brave.
“If you look at the landscape at how the world’s research works and how we are not discovering medicines quickly enough, this makes business sense, social sense and logical sense.”
The days of research being hidden is changing, in some scientific disciplines there is a recent practice of open access and sharing.
But not everyone is convinced data sharing is the way to go. In an editorial that appeared in the New England Journal of Medicine in January, the authors raise a list of concerns including one that research could be stolen and the data misinterpreted or misunderstood.
“There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as ‘research parasites’,” the authors write.
As for Harding, her approach of posting raw information in real time is reflective of her own desire to learn and the quest to better understand Huntington’s.
“I hope to show people, you can do really good science and you can make it be completely open and you can be successful doing it.”
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