The UCLA Center for Society and Genetics
First Annual Symposium:

The Storefront Genome 

January 26, 2003
Grand Horizon Room, Sunset Conference Center
UCLA

Program Moderator: Gregory Stock, Director of UCLA’s Program on Medicine, Technology, and Society, Visiting Professor, Dept. of Health Services, UCLA School of Public Health.

Within a decade, any individual will be able to completely sequence his or her genome for under $1000. The cost of a comprehensive individual genetic survey will be far cheaper. Soon we will likely understand what various constellations of genetic variants mean about our risks for diseases and even our temperaments and predispositions in life as well. As science comes to better understand such genetic influences, we will have to deal with this knowledge, both as individuals and as a society. Hopefully we will be able to do so in ways that preserve rather than undermine our values.

It may reassuring to simply say that humans are 99.9% the same, because 999 of every 1000 letters in our genetic codes are identical. But when we are seeking a mate or a friend, we are very sensitive to the many differences among us, and many of these differences are rooted in our underlying genetics. This Symposium takes as a given that a wealth of meaningful information about our genetics and biology will become readily available; our goal is to take an eyes-wide-open look at the challenges this will bring. Some of the most influential scientists and thinkers in this realm will explore the broad impacts of cheap, comprehensive genetic analysis on medicine, the law, human reproduction, society, and even our images of who we are. Whether we like it or not, we must not shy away from these issues, because they will be here sooner than we may imagine.

The Storefront Genome, sponsored by UCLA’s Center for Society and Genetics, is the first program in a series of annual symposia on controversial issues emerging from the genomics revolution. The program was made possible by a pilot grant from UCLA’s Office of the Chancellor. The event is free and open to the public. The proceedings will be captured on video and streamed over the Internet.

Predictive, Preventive, and Personalized Medicine:
A Look Ahead

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Powerpoint Presentation

Dr. Leroy Hood is recognized as one of the world’s leading scientists in molecular biotechnology and genomics. A passionate and dedicated researcher, he holds numerous patents and awards for his scientific breakthroughs and prides himself on his life-long commitment to making science accessible and understandable to the general public, especially children. One of his foremost goals is bringing hands-on, inquiry-based science to K-12 classrooms.

Dr. Hood earned an M.D. from Johns Hopkins University in 1964 and a Ph.D. in biochemistry from the California Institute of Technology in 1968. Since then, his research has focused on the study of molecular immunology and biotechnology. His interests also include autoimmune diseases, cancer biology and mammalian development. Dr. Hood has published more than 600 peer-reviewed papers and co-authored textbooks in biochemistry, immunology, molecular biology and genetics. He also co-edited “Code of Codes,” a book discussing scientific, social and ethical issues raised by genetic research. Dr. Hood is a member of the National Academy of Sciences, the American Philosophical Society, and the American Association of Arts and Sciences.

His professional career began at Caltech, where he and colleagues pioneered four instruments, the DNA and protein synthesizers and sequencers, that constitute the technological foundation for contemporary molecular biology. One of the instruments has revolutionized genomics by allowing the rapid automated sequencing of DNA. Dr. Hood also was one of the first advocates and is a key player in the Human Genome Project — the quest to decipher the sequence of human DNA. He also played a pioneering role in deciphering the secrets of antibody diversity.

In 1992, Dr. Hood moved to the University of Washington to create the cross-disciplinary Department of Molecular Biotechnology, bringing together chemists, engineers, computer scientists, applied physicists and biologists. At the UW, he applied his laboratory’s expertise in DNA sequencing to the analysis of human and mouse immune receptors and initiated studies in prostate cancer, autoimmunity, and hematopoietic stem cell development.

In 2000, Dr. Hood founded the Institute for Systems Biology in Seattle, Washington to pioneer systems approaches to biology and medicine. He is President and Director of this organization and continues with his interest in biology, medicine, technology development, and computational biology.

Dr. Hood has played a role in founding several biotechnology companies, including Amgen, Applied Biosystems, Systemix, Darwin, Rosetta, and MacroGenics.

Numerous organizations have honored Dr. Hood with academic and scientific awards for his study of immune diversity, development of instruments to study biology and medicine, distinguished contributions to medical science, improvements to diagnostic methods, and efforts to open doors for new treatments and cures. For example, Dr. Hood was given the Lasker Award in 1987 for studies on the mechanism of immune diversity, and in 2002 he was awarded the Kyoto Prize for Advanced Technology. Dr. Hood also holds honorary degrees from Montana State University, Mt. Sinai School of Medicine of the City University of New York, the University of British Columbia, the University of Southern California, Wesleyan University, Whitman College, Bates College, Johns Hopkins University, and The Pennsylvania State University.

Dr. Hood resides in Seattle with his wife Valerie Logan. They have two children — daughter Marqui, a lawyer, and son Eran, a hydrologist. Dr. Hood is a mountain climber and an avid runner who enjoys photography and reading.

Awards and Honors

• Kyoto Prize in Advanced Technology, 2002.
• Fellow, American Institute of Medical and Biological Engineering, 2002.
• Honorary Doctor of Science degree, The Pennsylvania State University, 2001.
• Member, American Philosophical Society, 2001.
• Edman Award, Methods of Protein Structure Analysis International Congress, 2000.
• Honorary Doctor of Science degree, Bates College, 1999.
• Distinguished Service Award from the American Association for Clinical Chemistry, 1998.
• Beckman Lecturer Award for Pioneering and Original Research in Laboratory Automation, 1998.
• Honorary Doctor of Science degree, Whitman College, 1995.
• Distinguished Alumnus Award from the Johns Hopkins University School of Medicine for changing how diagnoses are made and opening the doors for miracles in treatments and cures, 1994.
• Lynen Medal of the Miami Biotechnology Symposium, 1994.
• Ciba-Geigy/Drew Award in Biomedical Research from Drew University, 1993.
• Honorary Doctor of Science degree, Wesleyan University, 1992.
• American College of Physicians Award for distinguished contributions in science as related to medicine, 1990.
• Honorary Doctor of Humane Letters degree, Johns Hopkins University, 1990.
• Cetus Award for Biotechnology, 1989.
• Honorary Doctor of Science degree, University of Southern California, 1989.
• Commonwealth Award of Distinguished Service for work in developing instruments used to study modern biology and medicine, 1989.
• Honorary Doctor of Science degree, University of British Columbia, 1988.
• Albert Lasker Basic Medical Research Award for studies of immune diversity, 1987.
• Honorary Doctor of Science degree, Mt. Sinai School of Medicine of the City University of New York, 1987.
• Honorary Doctor of Science degree, Montana State University, 1986.
• Member, National Academy of Sciences and the American Academy of Arts and Sciences.

Genomics and Human Identity:
Who are Your People?

Streaming Video of Talk

Eric Juengst is an Associate Professor of Bioethics at the Case Western Reserve University School of Medicine in Cleveland, Ohio.

He received his B.S. in Biology from the University of the South in 1978, and his Ph.D. in Philosophy from Georgetown University in 1985. He has taught medical ethics and the philosophy of science on the faculties of the medical schools of the University of California, San Francisco and Penn State University.

His research interests and publications have focused on the conceptual and ethical issues raised by new advances in human genetics and biotechnology, and from 1990 to 1994, he was the first Chief of the Ethical, Legal and Social Implications Branch of the National Center for Human Genome Research at the U.S. National Institutes of Health.

He currently serves on National Ethics Committee of the March of Dimes, the U.S. Recombinant DNA Advisory Committee, the DNA Advisory Board of the Federal Bureau of Investigation, the Genome Research Review Committee of the National Human Genome Research Institute, and the editorial boards of the Journal of Medicine and Philosophy, Human Gene Therapy, the American Journal of Medical Genetics, and Community Genetics.

Genomics and the Future of Insurance

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Powerpoint Presentation

Dr. Lowden is Medical Director of LabOne Canada. He graduated in Medicine from the University of Toronto and trained in Pediatrics at the Hospital for Sick Children. Later he completed a PhD in Biochemistry at McGill University and the Montreal Neurological Institute. Following his training he combined a research and clinical career in biochemical genetics at the Hospital for Sick Children and was a Professor in the Departments of Pediatrics and Clinical Biochemistry at the University of Toronto. From 1976 to 1986 he was Associate Director of the Research Institute at the Hospital for Sick Children where he established the HSC Research Development Corporation, an applied research and technology transfer company and served as President and CEO of that company from 1982-1989. He has been a Director of several biotechnology companies. In 1990 he joined Crown Life Insurance Company and was Vice President and Chief Medical Director from 1991-1998. He was a member of the Executive of the Canadian Life Insurance Medical Officers Association from 1991-1998 and was President in 1994-95. From 1999 to 2002, Dr. Lowden was Senior Vice president and Medical Director of LabOne Inc.

Genomics and the Law:
Forensics, Privacy, Responsibility

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Mark A. Rothstein holds the Herbert F. Boehl (pronounced “Bail”) Chair of Law and Medicine and is Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville. He has appointments in the Departments of Medicine and Family and Community Medicine at the School of Medicine and at the Louis D. Brandeis School of Law.

Professor Rothstein is a leading authority on the ethical, legal, and social implications of genetics, privacy, and health policy. He is Chair of the Privacy and Confidentiality Subcommittee of the National Committee on Vital and Health Statistics, the federal advisory committee that advises the Secretary of Health and Human Services on health information policy, including the privacy regulations of the Health Insurance Portability and Accountability Act. He is also a member of the National Board of Medical Examiners. He has served as an advisor to the NIH, CDC, DOE, U.S. Congress, Institute of Medicine, National Conference of State Legislatures, and numerous other public and professional entities.

He is the author or editor of 17 books. His latest book, Pharmacogenomics: Social, Ethical, and Clinical Dimensions, will be published in December 2002 by John Wiley & Sons.

Health Records, Geneology, and Genetics –
Lessons from Iceland About the Tension Between
Public and Private Good

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Kari Stefansson has served as President, Chief Executive Officer, Secretary and a Director since he co-founded deCODE in August 1996. Dr. Stefansson was appointed to serve as the Chairman of our Board of Directors in December 1999. From 1993 until April 1997, Dr. Stefansson was a professor of Neurology, Neuropathology and Neuroscience at Harvard University. In addition, from 1993 through December 1996 he was Director of Neuropathology at Beth Israel Hospital in Boston, Massachusetts. From 1983 to 1993, he held faculty positions in Neurology, Neuropathology and Neurosciences at the University of Chicago. Dr. Stefansson received his M.D. and Dr. Med. from the University of Iceland in 1976 and 1986, respectively.

Choosing our Children’s Genes:
Promises and Perils

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Professor Steinbock received her Ph.D. from the University of California, Berkeley. A Fellow of the Hastings Center, her research is primarily in biomedical ethics, particularly in reproduction and genetics. She has served on a number working groups in the United States and Europe, and is currently a member of a Hastings Center working group on reprogenetics. Recent articles have been on moral status, embryonic stem cell research, sex selection, preimplantation genetic diagnosis, and cloning. She is the author of Life Before Birth: The Moral and Legal Status of Embryos and Fetuses (Oxford, 1992) and the editor of Legal and Ethical Issues in Human Reproduction (Ashgate Publishing, forthcoming 2002). She is the co-editor (with John Arras and Alex John London) of Ethical Issues in Modern Medicine, 6th edition (McGraw-Hill, forthcoming 2002) the co-editor (with Alastair Norcross) of Killing and Letting Die (Fordham, 1994), and the co-editor (with Dan Beauchamp) of New Ethics for the Public’s Health (Oxford,1999).

Dr. Gregory Stock is the Director of the Program on Medicine, Technology, and Society at UCLA’s School of Public Health. In this role he explores critical technologies poised to have large impacts on humanity’s future and the shape of medical science. His goal has been to bring about a broad public debate on these technologies and their implications, leading to wise public policies surrounding their realization. Of particular interest to the program are the implications for society, medicine, and business of the human genome project and associated developments emerging from today’s revolution in molecular genetics and bioinformatics. The symposium he convened in 1998 on the possibilities of manipulating the genetics of human embryos drew international attention as the first major public discussion of this issue among distinguished scientists and opened a global debate on this hitherto taboo topic.

A prolific author and recognized authority on the impact of new technologies on human society, Professor. Stock’s 2002 book, Redesigning Humans: Our Inevitable Genetic Future with Houghton Mifflin, won the Kistler Book Prize for Science books and was nominated for a Wired Rave Award. Among his other books are Engineering The Human Germline for Oxford University Press, Metaman, for Simon & Schuster, and the best seller, The Book of Questions, which has been translated into seventeen languages, and is now in its fifty-fifth printing. Sequels to that book include The Book of Questions: Business, Politics, and Ethics and a new book that will explore how coming technologies will reshape our everyday lives.

Dr. Stock has been an invited speaker to numerous academic, government, and business conferences,sits on the editorial board of the American Journal of Bioethics, and was asked to submit an Advisory Memo to the President on the challenges of the next century. He makes regular appearances on television and radio, including CNN, PBS, Bloomberg, and the BBC, and is hosting a television special later this year on recent advances in biomedicine.

Gregory Stock has a Doctorate in Biophysics from Johns Hopkins University, and an MBA from Harvard University and currently has appointments at Princeton University and UCLA’s School of Public Health.

Knowledge and its Consequences:
Decision Making and Patient Care in the Genomic Era

Streaming Video of Talk

Nancy Wexler is the Higgins Professor of Neuropsychology in the Departments of Neurology and Psychiatry at Columbia University. In 1979, Dr. Wexler learned that the world’s largest family with Huntington’s disease lived along the shores of Lake Maracaibo in Venezuela. For the past 22 years, Dr. Wexler continues to study the disease in hundreds of patients, building a pedigree of more than 17,000 people and collecting blood samples from over 4,200 people in the family. Her work was integral to the discovery of both the gene for Huntington’s disease and the development of a test that can determine carriers of the gene prior to the onset of symptoms.

Dr. Wexler currently serves as President of the Hereditary Disease Foundation, an organization founded in 1968 by her father and dedicated to researching the causes and cures of Huntington’s disease Dr. Wexler was recently elected to be a Fellow at the Royal College of Physicians; a Fellow, American Association for the Advancement of Science, Section on Neuroscience; a Member of the European Academy of Sciences and Arts; and to the position of Councilor, Society for Neuroscience. She is an honorary Fellow of the New York Academy of Sciences and a Member of the Institute of Medicine, National Academy of Sciences.

She counts among her honors the Foster Elting Bennett Award, the J. Allyn Taylor Award, and the Albert Lasker Public Service Award.