In January, a researcher was able to track down five randomly selected people from a database with only their DNA, ages, and states they lived in. Previously, geneticist Dr. David W. Craig created a method of identifying individuals even if their DNA contributed only 0.1 percent of a total mix of material. With the increasing ease and access to genetic information, ensuring the privacy of patients, volunteers, and everyday citizens is increasingly important.
“Research subjects who share their DNA may risk a loss of not just their own privacy but also that of their children and grandchildren, who will inherit many of the same genes,” said Mark B. Gerstein, a Yale professor who studies large genetic databases, in a recent New York Times article.
How can we protect the rights and privacy of individuals while encouraging genetic exploration and research?
Join the ScienceOnline community at swissnex San Francisco to hear from the scientists, legal experts, and patients at the heart of the debate. Presentations are followed by a panel discussion and audience Q&A. After the discussion, continue the conversation at a nearby bar (to be announced at the event).
6:30 pm doors open
7:00 pm talks and panel discussion
8:30 pm event ends
As Chief Instigator and CEO at Genomera, Greg Biggers helps fuel the participant-driven research movement, where people move from subjects to research collaborators, and where patients (Genomera just calls them people) drive the agenda and engage with one another to grow and test health science evidence. As a Board Member at Genetic Alliance, he helps lead a health advocacy organization committed to transforming health through dissolving boundaries and fostering dialogue among stakeholders. In addition, he serves on the BioTrust ethics team.
Mr. Biggers also serves on the board of an elementary school, a community development organization, and advises health startups. With over 20 years experience, he has spent most of his career focused on growing human collaboration and engagement. He brings deep consumer Internet experience to bear on seizing opportunities in health research. When not working on the future of health, he can often be found sailing a Santana 22 on San Francisco Bay. @Bigs
Dr. Wylie Burke is Professor and Chair of the Department of Bioethics and Humanities at the University of Washington and UCSF’s 2013 – 2014 Presidential Chair. She is also the founding director of the University of Washington’s “Center for Genomics and Healthcare Equality” that is funded by the National Human Genome Research Institute. Her research grapples with the ethical and policy implications of genomics in medicine and public health.
Barbara A. Koenig
Barbara A. Koenig, Ph.D., is a Professor at the Institute for Health & Aging. She is an anthropologist who works in the inter-disciplinary field of bioethics. She was at Stanford from 1993 through 2005; from 2005 to 2011 she founded and led the Biomedical Ethics Research Program at Mayo Clinic. Koenig pioneered the use of empirical methods in the study of ethical questions in science, medicine, and health. Her current focus is emerging genomic technologies, including: biobanking, return of research results to participants, and using deliberative democracy to engage communities about research governance. Koenig is Co-Director of the Kaiser/UCSF Center for Trandisciplinary ELSI [ethical, legal, social] Research in Translational Genomics (CT2G).
Robert L. Nussbaum
Dr. Robert L. Nussbaum, a board certified internist and medical geneticist, specializes in the care of adults with hereditary disorders. He is chief of Genomic Medicine Division in the Department of Medicine at UCSF and helps lead the Program in Cardiovascular Genetics and the Cancer risk Program at UCSF. Nussbaum is a member of the UCSF Institute for Human Genetics, where he is studying if and how genetic and genomic information can be used to improve health care by improving outcomes, reducing adverse reactions, lowering costs and promoting health through risk education.
Bart Wise was Vice President, Intellectual Property at Five Prime Therapeutics, a now-public biotechnology company that once was located in Mission Bay. Bart handled intellectual property and agreements at Five Prime and was on the leadership team. He has also served as Senior Intellectual Property Counsel at Geron Corporation and Patent Attorney at Roche Molecular Systems, where he was responsible for a range of patent matters relating to nucleic acid diagnostics. Bart began his career as a lawyer at the intellectual property law firm Finnegan, Henderson after obtaining his J.D. at the University of California, Berkeley. Before shifting his focus to law, Bart was a post-doctoral fellow at the University of Chicago in the laboratory of Dr. Elaine Fuchs. He has a Ph.D. in the Biological Sciences from Carnegie Mellon University and a B.S. in Chemistry from the University of Kansas. He now runs his own law firm.
Photo: Myleen Hollero