The Genomic Open: Then and Today

Start Time: 
Wednesday, November 18, 2015 - 10:30
End Time: 
Wednesday, November 18, 2015 - 17:00
Location: 
200 Biomedical Science Building

Regisration Required - Reserve your seat.

The story of the Bermuda Principles and their codification of genome scientists’ commitment to save the human genome from private enclosure is thedominant story of the Human Genome Project. 

Twenty years after the first historic Bermuda meeting, this seminar will gather together at UC Santa Cruz key players in the creation of an ‘open’ approach to genomics with historians of genomics and allied fields to critically reprise this iconic story.  UC Santa Cruz played an important role in ensuring that genomic data remained in the public domain.  Today it continues this commitment, but the times have changed.  

First, genomics is no longer primarily funded by public funds, and a line between public and private efforts can no longer easily be drawn.  

Second, human genomics is marked by a desire to gain data from private persons who have privacy rights that do not easily articulate to an ethos of open access.   

Third, genomics is a global science that requires working across nations that have diverse approaches to questions of privacy and private/public 'partnerships.’  

Finally, the number of people producing genomic data and the amount of data itself has grown exponentially, creating new challenges for creating data sharing rules and norms. Participants in this workshop will return to the forging of the Bermuda Principles in 1996 both to generate new insights about the emergence of the genomic open in the 1990s, and to understand what a richer understanding of this history might offer to contemporary efforts to enact public genomics.

 

Agenda

10:30-10:45 Welcome by Jenny Reardon and Introductions

 

Historical perspectives

10:45 - 11:10 AM       Bob Waterston

11:10 - 11:40 AM       Rachel Ankeny and Kathryn Maxson

11:40 - 11:55 AM       Jenny Bangham

11:55 - 12:10 PM        Steve Hilgartner

12:10 - 12:45 PM        Discussion

12:45 - 01:45 PM        Lunch  

 

Genomic Open meets the Biomedical Enclosure

01:45 - 02:00 PM        David Haussler

02:00 - 02:15 PM        Jenny Reardon

02:15 - 03:00 PM        Discussion

03:00 - 03:30 PM        Coffee Break

 

Where are we now?  Emerging Problems and Innovations

03:30 - 03:45 PM        Scott Edmunds

03:45 - 04:00 PM        Beth Shapiro

04:00 - 04:15 PM        Hallam Stevens

04:15 - 05:00 PM        Discussion

 

Biographies 

Rachel Ankeny

Rachel Ankeny is an interdisciplinary teacher and scholar at the University of Adelaide whose areas of expertise cross three fields: history/philosophy of science, bioethics and science policy, and food studies. She is an honorary senior fellow at the University of Exeter and a visiting faculty member at Arizona State University. In the history and philosophy of science, her research focuses on the roles of models and case-based reasoning in science, model organisms, the philosophy of medicine, and the history of contemporary life sciences including the use of databases and norms of science. She also has expertise and ongoing research on health and science policy, particularly regarding public engagement.

Jenny Bangham

Jenny Bangham is a historian of twentieth-century science and technology at the Max Planck Institute for the History of Science in Berlin and at the Department of History and Philosophy of Science in Cambridge. Her research deals with the practices, technologies and institutions through which medical and research communities produce knowledge about human life. Her current book project describes how in the mid-twentieth century the field of human genetics was shaped by blood group research and, by extension, bureaucratic technologies of public health, colonial and Cold War politics, and changing standards in anthropology. Her new project is about the history of the database ‘FlyBase’, and traces the politics, infrastructures, expertise and communication practices of the Drosophila genetics community between 1970 and 2000. Before pursuing her doctorate in the history of science, she obtained a doctorate in biology at University College London and worked as a Drosophila geneticist in the University of Edinburgh on the evolution of host–parasite dynamics.

 David Haussler

David Haussler, Scientific Director of the UC Santa Cruz Genomics Institute, is the geneticist and computer scientist whose team, in collaboration with the international Human Genome Project, posted the first human genome sequence on the Internet on July 7, 2000 and subsequently developed the UCSC Genome Browser, a web-based tool that receives more than 1 million information requests per day from biomedical researchers around the world. He is the co-founder the Genome 10K project aimed at sequencing the genomes of other mammals, birds, reptiles, amphibians and fish; the Treehouse Childhood Cancer Project to enable international comparison of childhood cancer genomes; and the Global Alliance for Genomics and Health, a coalition of the top research, health care, and disease advocacy organizations that have taken the first steps to standardize and enable secure sharing of genomic and clinical data.

Scott Edmunds 

Scott Edmunds is the Executive Editor of GigaScience, which aims to revolutionize data dissemination, organization, understanding, and use. An online open-access open-data journal, GigaScience publishes 'big-data' studies from the entire spectrum of life and biomedical sciences. To achieve their goals, the journal has a novel publication format: one that links standard manuscript publication with an extensive database that hosts all associated data, code, and provides data analysis tools and computing resources. He is also Open Science lead for Open Data Hong Kong.

Stephen Hilgartner 

Stephen Hilgartner is a Professor in the Department of Science & Technology Studies at Cornell University. His research examines the social dimensions and politics of contemporary and emerging science and technology, especially in the biosciences. He has authored numerous articles and several books, including Science on Stage: Expert Advice as Public Drama, which won the Carson Prize from the Society for Social Studies of Science and was translated into Chinese this year. Recent publications include papers in BioSocieties, British Journal for History of Science, Chicago-Kent Law Review, and Sociology of Sciences Yearbook, and a co-edited volume Science & Democracy: Making Knowledge and Making Power in the Biosciences and Beyond. Hilgartner is a Fellow of the American Association for the Advancement of Science.


Kathryn Maxson 

Kathryn Maxson (B.S., M.A.) is a third-year Ph.D. candidate in the Program in History of Science, Department of History, at Princeton Univeristy. She completed her undergraduate degree at Duke University in Biology, concentrating on biochemistry, molecular biology, and the philosophy of biology before deciding to pursue a career in the history of the biomedical sciences. Her research and teaching has thus far focused on the history of genomics, and particularly on the data sharing policies—the Bermuda Principles—underpinning the Human Genome Project. In addition to this work, Kathryn is currently conceptualizing a dissertation project that will explore the deep connections between marine biology, molecular biology, and neuroscience across the twentieth century.


 Jenny Reardon

Jenny Reardon is Professor of Sociology and Faculty Affiliate in the Center for Biomolecular Science and Engineering at UC Santa Cruz. She founded and directs the Science and Justice Research Center at UCSC. She is the author of Race to the Finish: Identity and Governance in an Age of Genomics (Princeton University Press, 2005) and is currently working on a second book manuscript entitled The Postgenomic Condition: Ethics, Justice, Knowledge After the Genome.


Beth Shapiro 

Beth Shapiro is an evolutionary molecular biologist. She is an Associate Professor in the Department of Ecology & Evolutionary Biology at the University of California, Santa Cruz. Shapiro's work has centered on the analysis of ancient DNA. She was awarded a MacArthur Fellowship in 2009.


Hallam Stevens 

Hallam Stevens is an assistant professor of history at Nanyang Technological University in Singapore where he teaches classes on the history of biology and the history of information technology. He is the author of Life Out of Sequence: A Data-Driven History of Bioinformatics (University of Chicago Press, 2013) and the co-editor of Postgenomics: Approaches to Biology After the Genome (Duke University Press, 2015).


Robert Waterson 
Robert H. Waterston is an American biologist recognised for his very important part in sequencing the human, mouse and chimpanzee genomes and for his work alongside John Sulston on sequencing the genome of the nematode worm C. elegans.

 

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