UCSC hosts 'Genomics Gets Personal: Property, Persons, Privacy' Sept. 27

World-class panel to discuss the fundamental ethical, social, and legal issues surrounding personal genomic research.

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UC Santa Cruz will convene a world-class panel of medical and legal experts September 27 at the UC San Francisco Mission Bay campus to discuss the fundamental ethical, social, and legal issues surrounding personal genomic research.

UC Santa Cruz researchers are deeply involved at the forefront of historic advances in genetic sequencing technologies that have transformed human genomes into a valuable new resource and in addressing the ethical and social questions the advances raise:

  • To what extent are genomes the property of persons, and thus subject to their control?
  • To what extent should genomes be shared with others in pursuit of medical breakthroughs or profit?

In "Genomics Gets Personal: Property, Persons, Privacy," panelists will explore these and other questions in the age of personal genetic sequencing that affect patients, families, researchers, government, and insurers, among others.

The event is free and open to the public and will take place Thursday, September 27 beginning at 6 p.m. at the UCSF Mission Bay Campus, Byers Auditorium, Genentech Hall, 600 16th St., San Francisco. It is co-hosted by the California Institute for Quantitative Biosciences (QB3), the UCSC Entrepreneurship and Business Group, and the San Francisco Slug Attorney Network.

Introducing the discussion will be David Haussler, leader of the UC Santa Cruz team that was the first to assemble the human genome sequence and make it available to researchers around the world. Haussler is a Howard Hughes Medical Institute investigator and Distinguished Professor of biomolecular engineering at UCSC and director of the UCSC Center for Biomolecular Science and Engineering.

Moderating the panel will be Jenny Reardon, whose research focuses on the intersection of genomics and society. Trained early in her career in molecular biology, Reardon went on to receive a Ph.D. in science and technology studies.  She is an associate professor of sociology and facility affiliate in the UCSC Center for Biomolecular Science and Engineering. She is also director of the Science and Justice Research Center at UCSC.

Confirmed panelists are:

Robert Cook-Deegan, M.D.
Research professor, Genome Ethics, Law & Policy
Director, Center for Genome Ethics, Law and Policy, Duke Institute for Genome Sciences and Policy
Author of Gene Wars: Science, Politics and the Human Genome Project

Gail P. Jarvik, M.D., Ph.D.
Head, Division of Medical Genetics
The Arno G. Motulsky Endowed Chair in Medicine
Professor of Genome Sciences
University of Washington Medical Center

Ryan Phelan
Founder, and former CEO, DNA Direct by Medco
Board member, Personal Genome Project
Founder, Direct Medical Knowledge
Founding executive director, Planetree

John Wilbanks
Director, Sage Bionetworks
Director, Consent to Research project (CtR)
Co-founder of the Access2Research petition
Senior fellow in Entrepreneurship at the Ewing Marion Kauffman Foundation

David Haussler’s research lies at the interface of mathematics, computer science, and molecular biology. As a collaborator on the international Human Genome Project, his team posted the first publicly available computational assembly of the human genome sequence on the Internet on July 7, 2000. Later, the team developed the UCSC Genome Browser, an interactive Web-based microscope that allows scientists to view annotated genome sequences of humans and other organisms at any level, from a complete chromosome to a single nucleotide. Haussler received his Ph.D. in computer science from the University of Colorado at Boulder. He is a member of the National Academy of Sciences and the American Academy of Arts and Sciences and a fellow of AAAS and AAAI.

Jenny Reardon received her Ph.D. from Cornell University. She was a fellow in Science, Technology and Public Policy at the Belfer Center for Science and International Affairs at the Kennedy School of Government at Harvard University. She has taught in the Division of Biology and Medicine at Brown University and was a fellow at the Institute of Genome Sciences and Policy and a research assistant professor in Women’s Studies at Duke University. Her book, Race to the Finish: Identity and Governance in an Age of Genomics, was published by Princeton University Press in 2005.

The discussion is free but attendees are encouraged to register by September 21 at community.ucsc.edu/GenomicsGetPersonal2012
More information on genomics research at UC Santa Cruz is available at ucsc.edu/features/genomics/index.html