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

A Lot on the Mind: Autism

In the second event hosted by Caveat NYC of a three-part series dedicated to explaining the most misunderstood neurological disorders, the focus was on autism, or autism spectrum disorder (ASD).

Of the many neurological disorders that affect the world, autism is one of the most familiar. Affecting 1 out of every 59 people, there are characteristics associated with the disorder that seem to be fairly consistent. However, a running theme at last week’s event, “A Lot on the Mind – Understanding Autism with braiNY and Spectrum Magazine,” was that if you know one person with autism, you know one person with autism. There is a huge range of behaviors that define the disorder and individuals with autism have their own unique strengths and weaknesses.

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Lisa Shulman, M.D., gives the audience background on autism spectrum disorder (ASD)

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Neuroscience and Society: Autism

When we’re trying to help people who have troubles due to autism spectrum disorders, one of the first challenges is definition: What does “autism” mean?

“Autism was and is still currently defined by behaviors,” Dana Alliance member Barry Gordon said, as researchers haven’t yet found solid biomarkers or other internal signals to identify it. “Whenever you read about autism, you might want to dig into what definitions they go into,” he said during a recent discussion at the American Academy for the Advancement of Sciences (AAAS) in Washington, DC.

Autism -Dawson - Oct2018Even definitions by behavior vary. For example, fellow presenter Daniel Geschwind said, problems with language used to be part of the diagnosis, but now doctors and other caregivers usually only count differences in social behavior and the presence of “repetitive-restrictive” behavior (like hand-flapping or always needing to do activities in the same order).

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Free Public Event on Autism

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Autism is a mysterious and puzzling disorder. In 1943, American child psychiatrist Leo Kanner first published a paper describing 11 children who were highly intelligent but displayed “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.” He called this condition “early infantile autism.” Prior to that time, people with autism were simply called insane. Autism is now officially known as autism spectrum disorder (ASD) and, while there is a wide variation in the nature and severity of its signs, people with ASD typically have difficulty with social communication and interaction, restricted interests, and repetitive behaviors. Continue reading

The Science of Autism is the Story of Real People

Guest post by Ted Altschuler, Ph.D.

Ruth had stopped doubting herself the morning she saw Joe do a jigsaw puzzle upside down. For some time, she had been nagged by a feeling that he was not like her other children in some crucial way. Six months earlier, Joe had stopped speaking, even though, up to that point, he had seemed to be developing normally…

And then there were these puzzles. He was working on one just then, a map of the United States whose parts were sprawled, like him, all over the kitchen floor and through the doorway into the living room. He was getting it done: New Hampshire met Maine, and New Mexico snapped in next to Arizona. But he was getting it done fast, almost too fast, Ruth felt, for a two-year-old. On a hunch, she knelt down to Joe’s level and pulled the map apart, scattering the pieces. She also, deliberately, turned each piece upside down, so that only the gray-brown backing was showing. Then she watched what Joe did with them.

He seemed not even to notice. Pausing only for a moment, Joe peered into the pile of pieces, then reached for two of them. They were a match. He immediately snapped them together, backside-up, between his knees on the floor. It was his new starting point. From there he kept going, building, in lifeless monochrome, out of fifty pieces, a picture of nothing.

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