Data & Society Privacy in the Era of Personal Genomics
PANELISTS:
Jason Bobe is Associate Professor and Director of the Sharing Lab at Icahn Institute at Mount Sinai. For the past 10 years, Jason has been at the forefront of innovative data sharing practices in health research. His work on the Personal Genome Project at Harvard, and now three other countries, pioneered new approaches for creating well-consented public data, cell lines and other open resources. These efforts led to important changes in the governance of identifiable health data and also led to the development of valuable new products, such as NIST’s standardized human genome reference materials (e.g. NIST RM 8392), now used for calibrating clinical laboratory equipment worldwide.
More recently, he co-founded Open Humans, a platform that facilitates participant-centered data sharing between individuals and the health research community. At the Sharing Lab, he attempts to produce health research studies that people actually want to join and works on improving our understanding of how to make great, impactful studies capable of engaging the general public and achieving social good. He is alsothe leader of the Resilience Project, an effort leveraging open science approaches to identify and learn how some people are able avoid disease despite having serious risk factors. Last year, he was selected to be in the inaugural class of Mozilla Open Science Fellows. He is also co-founder of two nonprofits: Open Humans Foundation and DIYbio.org.
Dr. Sophie Zaaijer is a Postdoctoral Researcher in the Erlich’s lab at the New York Genome Center and Columbia University. Sophie is from the Netherlands, where she did her undergraduate in Music (viola) and Food Technology. For her Masters, she studied Medical Biotechnology at Wageningen University and went to Harvard Medical School to finish her thesis work in Monica Colaiacovo’s lab. She next went on to do a PhD in Molecular Biology and Genetics in Julie Cooper’s lab at Cancer Research UK, London (now the Crick Institute) and at the National Institutes of Health, Bethesda. Sophie focuses on genome technology and the growing impact of genomics on our daily lives.
MODERATOR:
Heather Dewey-Hagborg is a transdisciplinary artist and educator who is interested in art as research and critical practice. Her controversial biopolitical art practice includes Stranger Visions in which she created portrait sculptures from analyses of genetic material (hair, cigarette butts, chewed up gum) collected in public places.
Heather has shown work internationally at events and venues including the World Economic Forum, Shenzhen Urbanism and Architecture Biennale, the New Museum, and PS1 MOMA. Her work has been widely discussed in the media, from the New York Times and the BBC to TED and Wired.
She is an Assistant Professor of Art and Technology Studies at the School of the Art Institute of Chicago and a 2016 Creative Capital award grantee in the area of Emerging Fields.
INTRODUCTION:
Daniel Grushkin is founder of the Biodesign Challenge, an international university competition that asks students to envision future applications of biotech. He is co-founder and Cultural Programs Director of Genspace, a nonprofit community laboratory dedicated to promoting citizen science and access to biotechnology. Fast Company ranked Genspace fourth among the top 10 most innovative education companies in the world.
Daniel is a Fellow at Data & Society. From 2013-2014, he was a fellow at the Woodrow Wilson International Center for Scholars where he researched synthetic biology. He was an Emerging Leader in Biosecurity at the UPMC Center of Health Security in 2014. As a journalist, he has reported on the intersection of biotechnology, culture, and business for publications including Bloomberg Businessweek, Fast Company, Scientific American and Popular Science.