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Big Data in Biomedicine panel examines data sharing difficulties

Sharing data to expand knowledge and accelerate the pace of scientific discovery was a big theme at the 2017 Big Data in Biomedicine Conference. But, if data sharing is so beneficial, why aren't more researchers and organizations doing it? A session featuring speakers from the world's largest medical library, the National Library of Medicine, shed some light on the topic.

"Datasets are like children — beautiful to the people who create them," said National Library of Medicine Director Patricia Brennan, PhD (who we featured in a recent Q&A). The audience chuckled, but Brennan had hit on something big: People who work with data (myself included) often dote over the datasets they bring into this world and protect them fiercely.

"I believe in data sharing," said Valerie Florance, PhD, associate director of the National Library of Medicine. "But some don't see it as sharing. To them, data reuse feels parasitic. So, how can data science make data sharing fair?"

Florance drove her point home with a short film (featured above) that examines the stakes of data sharing from the perspective of the person who published a paper on their data, and the person who'd like to use it for their research.

The video may look simplistic, but it's cinematic gold. Here are a few lines:

Researcher: “I read your article on B cell function. I think that I could use the data for my work on pancreatic cancer.”
Author: “I am not an oncologist.”
Researcher: "I know, but I think I could use the data for my work on pancreatic cancer. Do you have the data?”
Author: “Everything you need to know is in the article.”
Researcher: “No. What I need is the data. Will you share your data?”
Author: "I am not sure that will be possible.”
Researcher: “But your work is in PubMed Central and was funded by NIH... and it was published in Science which requires that you share your data…"
Author: "I am not sure where my data is… it is in a box at home... I just moved. There are many boxes. So many boxes! I forgot to label the boxes."

The film is funny and thought provoking, touching on many of the all-too-familiar issues data users encounter on a regular basis. It's well worth a look.

Previously: Countdown to Big Data in Biomedicine: On personal data and sustainabilityCountdown to Big Data in Biomedicine: Genomic data sharing is key, says UCSC’s David Haussler and How the FDA is promoting data sharing and transparency to support innovations in public health
Film by Karen Hanson, Alisa Surkis and Karen Yacobucci, NYU Health Sciences Libraries

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