Non-scientists researching diseases

Since I prematurely reentered grant writing hell, there’s been a bit of delay with the last segment of my blog series on our Gene Wiki renewal proposal.

But in the mean time, I did want to share one interesting vignette that is highly relevant to our last aim on patient-aligned crowdsourcing. In trying to assess whether patients and their loved ones might be willing to participate in a scientific crowdsourcing project, I posed the following question on Twitter:

“Need examples where non-scientists become immersed in science due to personal connection to disease. Pointers?”

The number of responses and the depth of their efforts was really eye opening. Dig into a few of the stories below, which I’ve put into a Storify. There many examples that put a very human face on disease, and truthfully it’s a view that I think we don’t see often enough as basic biomedical researchers.

In any case, it reaffirmed our belief that patient-aligned individuals are very willing and able to contribute to science. More on that in the next post…


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  1. Aim 4: Patient-aligned crowdsourcing | The Su Lab - [...] welcome that opportunity to contribute. This point was made especially clearly by our recent Twitter interactions that showed how…