Taste of Science: Big Human Data

Big tech companies have been in the spotlight with news coverage of how our personal data has been used or abused–and for many people, the lack of privacy is an unavoidable reality. But tech companies aren’t the only ones interested in obtaining our personal information. Health researchers and data scientists are looking to the widespread sharing of personal data as an opportunity to learn more about genetics, diseases, and overall personal health.

Big Human Data,” the first taste of science event of the year, welcomed two experts on the topic: Hannah Bayer, Ph.D., chief scientific officer at Data Cubed, and Wendy Chung, Ph.D., director of clinical research at the Simons Foundation.

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Hannah Bayer, Ph.D. Photo courtesy of taste of science.

Bayer compared her view of big human data to the laborious, weather-dependent approaches early astronomers used to gain a base understanding of the stars. The practice was revolutionized about 25 years ago, she said, when scientists discovered that bolting a telescope to the ground allowed them to create a massive library of images while the earth was turning. A database including all the black holes in our universe made it easier for scientists to “go in, and just pick out all the black holes, and do your research that way,” she said. This is what turned astronomy into a data science.

“What if we could do that for humanity?” she asked the audience. “What if we could understand what makes us ill, what makes us healthy, what makes us successful … What if we could create a catalogue in just the same way?” Continue reading

Falling Down on the Job

At Rockefeller University, the message from a Brain Awareness Week panel of four that focused on how the media communicates neuroscience and psychiatric disorders was loud and clear: vast improvement is badly needed–and there is little reason to think things will change.

Brain awareness often means delving into complex issues, and the media is programmed for sound bites rather than nuance, was the consensus. Maia Szalavitz, an author and contributor to Time‘s Healthland, made the not-so-uplifting point that understaffed magazines and newspapers in a downsizing print industry often assign a single writer to cover several stories a day. This can translate into over simplification, shoddy reporting, and inferior sources when matters of the brain are addressed.

Neuro-oncologist and Dana Alliance for Brain Initiatives member Robert B. Darnell, M.D., Ph.D., is troubled by the media’s need to “dumb down” neuroscience concepts to “a seventh-grade reading level,” which too often translates to inaccuracies or misleading stories. Darnell, who is president and scientific director of the New York Genome Center, believes he and other scientists have an obligation to explain their work, but “science can be extremely complicated, and at times it’s difficult and inappropriate to simplify the science beyond what is a reasonable representation,” he said. Darnell also feels that since we are now capable of detecting the probability of future diseases and disorders through gene sequencing in children, the media needs to better tell the cost/benefits and ethical side of the story. Enormous implications are at stake, he believes.

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