EventJanuary 19 2017

Privacy in the Era of Personal Genomics

6:00 pm
Data & Society

Genomics, the collection and interpretation of DNA sequences, has long promised to change the way doctors practice medicine, scientists research disease and the environment, and ultimately the way we understand ourselves. In the past, reading DNA was slow, laborious, and expensive. Reading the first human genome cost $3 billion and took 13 years to complete in 2003. Today, that same genome could be read for roughly $1,000 in a few hours. And a gene sequencer, once a lumbering machine, can now fit into the palm of a hand.

In less than a decade, the practice of genomics has become ubiquitous, and the data sets enormous. Its wide adoption comes barbed with ethical challenges, tensions between scientific progress and individual privacy, and a heritage based in racial discrimination. Join Data + Society and Genspace for a panel discussion exploring the promises, challenges, and perils as genomics becomes a common part of everyday life.


The Biotech Futures Talk + Lab Series explores the implications of and ways in which biology is becoming a data science. Each talk is paired with a 3-4 hour lab workshop at Genspace for Data & Society and Genspace community members to demonstrate how these themes become realized in the lab. Lab details to follow.



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.



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.



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.



Genspace is a nonprofit organization dedicated to promoting science literacy through citizen access to biotechnology. It provides educational outreach, cultural events, and a platform for science innovation at the grassroots level. Genspace values cross-disciplinary practices and the significance of creating an environment in which designers, artists, and scientists can exchange new methodologies and practices, and provide a platform for collaborations, innovations, and critical dialogue.


Data & Society is a research institute in New York City that is focused on social, cultural, and ethical issues arising from data-centric technological development. To advance public understanding of the issues, Data & Society brings together diverse constituencies, hosts events, does directed research, creates policy frameworks, and builds demonstration projects that grapple with the challenges and opportunities of a data-soaked world. Data & Society weaves together researchers, entrepreneurs, activists, policy creators, journalists, geeks, and public intellectuals to debate and engage one another on the key issues.