STANFORD CENTER FOR BIOMEDICAL ETHICS Stanford Bioethics Volume 2, Number 2: Fall 2005 In This Issue: State of the Center • State of the Center The last year has been another very Tobin and Judy Illes assembled a The group is already hard at work. The active year for bioethics and for SCBE. working group, funded by NIH and research lineup includes examining We witnessed the death of Terri DOE, to address the question of important ethical and policy issues • SCBE launches the Schiavo, the birth of the California reporting results of genetic research such as informed consent, state and Program in Stem Institute of Regenerative Medicine and to subjects. federal funding and regulation, patient Cells and Society lawsuits against the California stem advocacy, the timing of and transition cell initiative, the use of nuclear Finally, SCBE is undergoing much- to clinical trials, the effects of state and CIRGE completes transfer to create human embryonic needed renovations at the end of the federal legislation on economic • stem cells, and the cloning of dogs, summer, and looks forward to development, and ethical issues in cord first year among other things. SCBE facilitated another busy and successful year. blood and hematopoietic stem cell public dialog of important ethical transplants. • SCBE Course issues as they arose – for example, we Update hosted a mini-symposium about the PSCS activities go beyond research to Terri Schiavo case, entitled, “When include education and public service. Life Should End: Who Should Two new multidisciplinary classes in • Worlds Apart Decide?” with David Magnus, director stem cell biology, ethics and policy are continues to receive of SCBE, and Deborah Rhode, director slated for the Winter quarter, one in acclaim of the Stanford Center on Ethics Continuing Education, the other in speaking to a standing-room only Human Biology. The classes will join Faculty Profile: crowd at the medical school, existing seminars and lectures as part • moderated by Julie Parsonnet, Senior of an ambitious teaching schedule. A Sandra Lee Associate Dean for Medical Education. documentary film about stem cell In May, David Magnus and Mildred SCBE Launches New research is also in the offing. • Faculty/Staff News Cho wrote an article that accompanied Stem Cell Program: Consultations and public service are the publication of the work of Hwang Group will study ethical, part of the PSCS mandate—members On the Move: et al. in Science describing the are available to medical school and • development of “individualized” legal and social dimensions campus committees overseeing stem Hellos and Goodbyes human embryonic stem cell lines using of stem cell research cell research. In addition to the nuclear transfer. Stanford responsibilities, the group • SCBE Faculty Stanford’s leadership in stem cell plans outreach projects to patient rights Recent Publications On the educational front, SCBE has research has spurred the formation organizations and education for added a number of new courses to its of a new group that will tackle legislators, staff and other public roster, which are described below. In social, legal and ethical questions servants. • SCBE Upcoming addition, Audrey Shafer is offering associated with stem cell research Events two medical humanities courses this and medicine. The Program in Stem Along with Magnus and Greely, PCSC year, INDE 211: Creative Writing and Cells and Society (PSCS) is the fifth membership includes SCBE associate INDE 226: History of Medicine. program on the SCBE roster, director Mildred Cho, Neuroethics LaVera Crawley is developing a new joining the Program in Neuroethics, director Judy Illes, and Maren course on research methods in Center for Integrating Research in Grainger-Monsen, who leads the bioethics, capitalizing on her Genetics and Ethics (CIRGE), the Biomedical Ethics in Film Program. background in both qualitative and Biomedical Ethics and Film Joining this group is Christopher Scott, quantitative methods. Clarence Program, and the Program in Arts, former Assistant Vice Chancellor of Braddock continues to make Humanities and Medicine. Research at UCSF and lawyer Ken significant improvements to INDE Taymor. Scott was formerly Stanford’s 201: Practice of Medicine, which is a “An ELSI-like program in stem Director of Research Development and major portion of the medical school cells is a natural fit for Stanford,” is a past member of the PGES. An Stanford Center curriculum, and this year LaVera says SCBE director David Magnus, attorney in private practice, Taymor for Biomedical Ethics Crawley is taking the lead on in a reference to the Human has taught law and economics at developing the ethics component. Genome Project’s ethics, legal and Stanford and has served as special Stanford University social issues working group. Hank counsel to numerous state and local SCBE researchers have taken the lead Greely will direct the program. agencies in California. in helping to develop research policy “PSCS will have a close association 701 Welch Road that addresses key ethical issues, such with Stanford’s Institute for Stem Building A as researcher’s obligations to report Cell Biology and Regenerative Suite 1105 research findings to subjects. Judy Medicine,” he says. “I hope it will Palo Alto, CA 94304-5748 Illes led an NIH-funded initiative on help set the agenda for stem cell “Detection and Disclosure of policy in California, the United Ph: (650) 723-5760 Incidental Findings in Neuroimaging States, and the world.” Fax: (650) 725-6131 Research,” and Mildred Cho, Sally http://scbe.stanford.edu [email protected] Stanford Bioethics, Vol. 2 No. 2 Page 2 of 9 Center for the Genetic Research Policy “Current Concepts and Dilemmas in Integration of Development Program Genetic Testing,” focuses on issues Research on CIRGE brought together CIRGE arising as bench discoveries in genomic Genetics and collaborators at Stanford and others in science and genetics move into the Stanfordthe genetic Bioethics, research and ELSI Vol. 2 No.clinical 2 realm. The coursePage debuted 2 inof 10 Ethics communities by organizing a workshop Spring 2005, and will be offered again Completes First to discuss researchers’ obligations for in Spring 2006. Year reporting results of genetic research to research subjects. Members of key MED 255: Mildred Cho reorganized CEERS and professional societies came the Spring 2005 Responsible Conduct Completing its first year, the Center for together to begin to formulate of Research course and it is now so the Integration of Research on Genetics guidelines on reporting results, and are popular that multiple course sections and Ethics (CIRGE) established five working collaboratively to disseminate will be offered throughout the year to major programs, including: the the results of the working group’s deal with the demand. For the Program for Integrated ELSI Research, deliberations to a variety of audiences. upcoming academic year 2005-2006, the Benchside Ethics Consultation Sally Tobin, who also led discussion Service, the Genetic Research Policy CIRGEweb sections in the previous RCR course, Development Program, CIRGEweb, Zach Pogue, Vince Dorie and Gina will organize and coordinate the course and the CIRGE Postdoctoral Training Capodanno have worked very hard to based on the discussion model initiated Program. set up the CIRGE website. It is by Mildred. intended to be an extensive web The Program for Integrated ELSI resource that includes references and Research (PIER) links to dozens of articles and websites The Behavioral and Neurogenetics on ethics, law, and policy pertaining to Working-Group, led by Judy Illes and genetic research for genetic researchers, Joachim Hallmayer, and including benchside ethics consultants, policy research assistants Jennifer Singh and makers, and the general public. Cheryl Theis, initiated the Autism Recordings of CIRGE events and the Project. The project examines autism as CIRGE weekly newsletter will also be a model system for investigating the available for download through reciprocal influences of social CIRGEweb. Worlds Apart Continues processes and biomedical research on to Receive Acclaim the identity of neurobiological CIRGE Postdoctoral Training difference. The research gives special Program Maren Grainger-Monsen’s recent attention to the evolution of a genetic Two new postdoctoral fellows have documentary Hold Your Breath was understanding of autism. The project started their training at CIRGE: Holly discussed in an April Newsweek article, includes: a historical and comparative Tabor, who has a background in “When Cultures Collide”; included in analysis of funding for autism research, genomics research and the history of June on ABC World News Tonight; a study of scientific and popular science, and Jennifer McCormick, who and featured in a San Francisco definitions of autism and understanding has a background in neurogenetics and Chronicle article prior to a June of its causes, and qualitative study science policy. They began in August screening as part of Film Arts identifying the role of advocacy groups 2005 and will be taking courses and Foundation’s True Stories documentary on genetic research on autism. In planning research projects for their series at Yerba Buena Center for the March, PIER also co-hosted a two-year fellowships. Arts in San Francisco. Maren is symposium at Stanford with the finalizing plans to screen the film this Stanford Knight Fellowships Program SCBE Course Update fall at locations around the country. for accomplished