How governance can enable more patient consent. Patients have traditionally been sidelined in medical research and need to be enabled to become activated partners. The current consent and privacy barriers will be highlighted along with multiple pilot projects to allow patients and scientists to work together in sharing their data. Such opportunities require new governance models for sharing data, tools and disease models."
Kelly Edwards, Ph.D., is an Associate Professor in the Department of Bioethics & Humanities at the University of Washington School of Medicine and Adjunct Associate Professor in the Department of Environmental and Occupational Health. Her training is in Medical Ethics and Philosophy of Education. She teaches and develops curriculum in ethics and professionalism for medical students, residents, and faculty. Dr. Edwards has also served as a curriculum advisor and project co-director for two HRSA contracts to develop genetics curriculum for primary care physicians. She is involved in a number of collaborations that examine justice concerns in genetics research, ethics of community-based research, and international governance models for biobanks.
Dr. Edwards' research interests include clinical decision making, effective approaches to ethics education, and research ethics. Special interests include cultural differences, communication, feminist and narrative approaches to bioethics, research ethics, and integrating ethics into medicine and science education.
She joined the faculty at the Institute for Public Health Genetics in Spring 2002 and directs the Ethics and Outreach Core for the NIEHS-funded Center for Ecogenetics and Environmental Health.
Peter Kapitein is President and patient advocate of inspire2live.
Jane Kaye is Director of the Centre for Law, Health and Emerging Technologies at Oxford: (HeLEX) based in the Department of Public Health at the University of Oxford. She obtained her degrees from the Australian National University (BA); University of Melbourne (LLB); and University of Oxford (DPhil). She was admitted to practice as a solicitor/barrister in 1997. She is advisor to a number of F7 projects and on the Sample and Ethics Committee of the 1000 Genomes Project; International Scientific Advisory Board Canadians for Tomorrow Project; UK10K Ethics Advisory Group and Chair of the CARTaGENE International Scientific Advisory Board, Canada. She is also on the editorial boards of Law, Innovation and Technology, Journal of Law and Information Science, and Genomics, Policy and Society.
Her research involves investigating the relationships between law, ethics, and practice in the area of emerging technologies in health. The main focus is on genomics with an emphasis on biobanks, privacy, data-sharing frameworks, global governance and translational research
Lara Mangravite is Sr. Scientist of Systems Biology at Sage Bionetworks.
Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations. Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation. She developed a diagnostic test and conducts clinical trials. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She is the author of more than 100 peer-reviewed articles. In her focus at the forefront of consumer participation in genetics research, services and policy, she serves in a leadership role on many of the major international and national organizations.
As VP of Science, John Wilbanks runs the Science Commons project at Creative Commons. He came to Creative Commons from a Fellowship at the World Wide Web Consortium in Semantic Web for Life Sciences. Previously, he founded and led to acquisition Incellico, a bioinformatics company that built semantic graph networks for use in pharmaceutical research & development. Previously, John was the first Assistant Director at the Berkman Center for Internet and Society at Harvard Law School and also worked in US politics as a legislative aide to U.S. Representative Fortney (Pete) Stark.
John holds a Bachelor of Arts in Philosophy from Tulane University and studied modern letters at the Universite de Paris IV (La Sorbonne). He was a research affiliate at the MIT Computer Science and Artificial Intelligence Laboratory in the project on Mathematics and Computation. John also serves on the Advisory Boards of the U.S. National Library of Medicine’s PubMed Central, the Open Knowledge Foundation, the Open Knowledge Definition, and the International Advisory Board of the Prix Ars Electronica’s Digital Communities awards. He also serves on the Board of Directors of the Fedora Commons digital repository organization.