Thursday, February 23, 2012

The Data Afterlife

I was thinking a bit about the picture I used on my blog post yesterday.  If you don't know what it's of, that's where you go when you die.

I'm not joking.  That was in the morgue of an abandoned hospital.  There were dozens of colossal tissue storage cabinets, each with dozens of drawers, and each drawer again with dozens of tissue samples, one for everyone who ever died at the hospital.  When the hospital closed altogether, this collection of tissue samples--thousands of them in total--was simply left to rot in the morgue of the hospital.  In spite of this time consuming data collection effort, these slides were probably never examined again.  Nothing was done with the data, yet each little slide was someone's life.

I don't believe in an afterlife, and I don't believe in ghosts, but somehow looking at those drawers of slides was a solemn experience, like witnessing an injustice long after the fact.  These people gave of themselves ostensibly hoping that this could be a dying gift to science and humanity, and instead their sample was unceremoniously abandoned in a hospital basement.

Maybe that's a bit extreme.  I feel no emotional attachment to my skin flakes in life or death, but then not all of my skin flakes are meticulously tagged, numbered and stored in a tissue storage cabinet. That said, I had the same solemn feeling from finding those cabinets again lately.  I've been examining data from The Cancer Genome Atlas and realised that each of these data points was someone's life.  Hundreds of factors--clinical data, time until death, even genetic information--all made up someone's life, and they nobly allowed me to have the data so that others might not suffer their fate.  In the case of The Cancer Genome Atlas, their data is not rotting in a basement somewhere and never will be:  anonymous data is placed in a public location where all researchers everywhere have the opportunity to use it to make the world a better place.  That's the way it should be.

Many of my colleagues at Sage have a hard time getting other researchers to share their data.  For the researcher who hordes data, that same data may represent their next paper, their next grant, or their job security.  That data is also a precious gift granted by a patient who cared about none of those things, and really just wanted to do their part to advance science and save lives.

For those who do not make their data easily available to all, or sit on data for years, I hope you'll keep this in mind and do your part to make your data open-access whenever it is ethical to. 


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