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 journalists, entitled, “Genetics, Neurobiology, and INDE 136: David Magnus will In July, Maren screened the Addiction: Where are the answers?” introduce a new course in Winter 2006, Mohammad Kochi Worlds Apart story The Foundations of Bioethics, which at the Islamic Medical Association of The Benchside Ethics Consultation will survey central topics in bioethics. North America’s annual meeting in San Service The course will introduce students to Francisco. The Worlds Apart films In collaboration with the Center for classic articles, legal cases, and were screened in April as part of a Genetic Research Ethics & Law concepts serving as the foundation of Faculty Development Session at the (CGREAL) at Case Western Reserve the field, and will focus on the ethics of University of Nevada, and during the University, CIRGE has outlined a medicine and research on human plenary session, “Voice Lost in structure for a genetic research ethics subjects, assisted reproductive Translation: Caregivers/Patient consultation service. The consultation technologies, genetics, cloning, stem Communication,” at the Faith and team, including David Magnus, Hank cell research, and ethical issues at the Culture conference at the Oregon Greely, Mildred Cho, Sally Tobin, end of life. Health and Science University. Worlds Maren Monsen, and Gina Capodanno, Apart is currently being used in more developed a conceptual framework and INDE 238: Sally Tobin, with than 45 medical schools, 150 residency a consultation protocol. New Program colleagues Iris Schrijver and Tina programs and medical centers, and 180 Manager Angie Boyce is developing an Cowan of Pathology, submitted a colleges and universities, as well as evaluation plan in order to measure the successful proposal to initiate a libraries and other health-related impact of the service. graduate level course in educational institutions across the Interdisciplinary and Translational country: over 490 institutions Research Training. The course, entitled nationwide. Page 3 of 8 Stanford Bioethics, Vol. 2 No. 2

technologies and drug development technologies with a grain of salt and Faculty Profile: will have on existing health disparities. that the amount of precision is Sandra Lee somewhat suspect. What is most In pursuing these questions, Sandra interesting however, is that there is utilizes her training in anthropology to such demand for this type of Sandra Soo-Jin Lee, PhD, has been conduct ethnographic research, information which, Sandra says, reveals awarded a five-year Scientist including participant observation of how we as a society privilege the idea Development Award in Research scientific laboratory settings, in depth of race as a biological category and will Ethics grant from the National Human interviewing of scientists working in look to DNA and genetics research to Genome Research Institute to work on both academic and commercial settings tell us fundamental answers to the ethical and social implications of and extensive archival research. The questions of who and what we are. One pharmacogenomics and distributive goal of her work is to try to understand of the questions left unanswered is how justice. While the promise of the meaning of concepts within a local such information will impact on our pharmacogenomics is an era of sphere, rather than coming in with ideas about human difference issues individualized medicine where drugs notions already of what race means, for related to justice in health and will be tailored to the genetic signature example. The idea is to work with healthcare. Sandra hopes by examining of each individual, Sandra is interested scientists to think about how they are these topics as genomic technologies in issues around race and human defining race, because it may be very are developing, ethicists will be able to genetic variation research and the ways different in a different arena, how are contribute to policies that are consistent pharmacogenetic technologies might they defining difference and how do with our social values. impact our social conceptions of race they approach concepts like justice in and human difference. their work? She is currently Sandra is a Senior Research Scholar in collaborating with a pharmacogenomics the Stanford Center for Biomedical Sandra’s interest in issues around research group in the U.K. in Ethics. She received her “race” and genetics began with her comparative research on categories of undergraduate degree in Human research on the use of racial and ethnic “race” in science. Biology at Stanford and her Ph.D. from categories by publicly funded DNA the Joint UC Berkeley/UCSF Program repositories. Her research traced the in Medical Anthropology. She has often incongruous taxonomies used by been awarded a Rockefeller Foundation various repositories in categorizing Humanities Fellowship, a National DNA samples and investigated their Research Service Award and a Career political and historical lineage. Development Award from the National Focusing on the DNA Polymorphism Genome Research Institute. Her Discovery Resource created in 1998, articles have been published in journals Sandra explored the unique decision by including the Yale Journal for Health the NIH to eliminate racial and ethnic Policy, Law and Ethics; PLoS Biology, identifying information from the American Journal of samples stored and distributed by the Pharmacogenomics; and JAMA. In repository. Through extensive December an article on her most recent interviews with scientists familiar with research on race and pharmacogenomics will be appearing in the resource, Sandra found that the Sandra’s interest in issues around under use of the repository was often the American Journal of Public Health. “race” and their impact on health, due to the “colorblind” policy and that Sandra is currently working on a book, social identity and justice began with entitled Excavating ‘Race’ in the New scientists felt that information on her anthropological research of “race,” ethnicity, and ancestry was Genetics, which examines the emerging minority identity in Japan. Studying salient for their research. discourse of difference in the context of aging and the effects of social recent advances in genomic discrimination on the health of elderly Building on this research, Sandra’s technologies in human genetic variation Korean residents in Tokyo, Sandra current project is focused on how research. This book will discuss the began to think about the shifting production of meaning around genes scientists working in drug development boundaries of group identity and their conceptualize “race” and how these and individual and group identities impact on human life. Sandra has models of difference are incorporated through a focus on the categorization of continued her exploration of these DNA samples in publicly funded into biomedical research. As part of questions in studying how scientists her current research program, Sandra repositories in the U.S. and the think about “racial” and ethnic has been following various drugs, development of disease and drug difference and its impact on biomedical response association studies. This book including BiDil, an anti-hypertensive research. One challenging question for drug, which was recently approved by will critically analyze the often the U.S. context is the porosity between the FDA for use only in African competing stakes around “race” in the traditional categories of “race” and the sampling, storing, and “sorting” of Americans. As the first drug to be “mixing” of people. Sandra has noted approved for use exclusively in a human genetic material and will discuss the increased interest in using genomic racially identified population, Sandra is how claims of social justice, science technologies to determine ancestry and and ethics reconfigure current struggles interested in how such a decision points to companies that try to parse out regarding drug labeling will impact on over the meaning of “race.” one’s exact heritage. For example, you future trajectories in drug development might be 20% European and 60% and the interactions between race and African American. However, Sandra genetics. A particular focus of her believes we should take these research is the impact genomic Stanford Bioethics, Vol. 2 No. 2 Page 4 of 8

Faculty/Staff News Neurological Disorders and Stroke as professionals and students who are well as a project supported by the interested in genetics, and it has served Henry J. Kaiser Family Foundation as a text in graduate and undergraduate Audrey Shafer reports that The examining if existing regulations are classes. In addition to updating the Biomedical Ethics and Medical challenged by direct to consumer content to include advances in science, Humanities Scholarly Concentration advertising of neurotechnology. Dr. medicine, and policy, the content is got off to a great start last year with Racine has given numerous talks, being transferred into a browser-based nine terrific second year Stanford including recent talks on the ethics of format that can be delivered either medical students: Tina Allee, Cheri neuroimaging at the Douglas Hospital online or as a CD-ROM (for those who Blauwet, Hugh Keegan, Gina Kwon, Research Centre (McGill University, lack fast connections to the Internet). Christopher Richards, Lori Rutman, Montréal) and at the Philosophy Tracy So, Peter Van Roessel, and Department of the University du Sally directed the Stanford component Joanna Wrede. These students, in Québec à Montréal. Last October, his of the EDGE project (Education in addition to the usual medical school paper “Is neuroethics the heir of the Genetic Ethics), assisted by Raina coursework, are also engaged in ethics of genomics?” (co-authored with Glazener. The project has developed a projects and taking courses related to Judy Illes) was one of the seven curriculum for professional education the concentration. They are involved in winners of the student competition of about ethical issues in genetic research. the life of SCBE in numerous ways, the Canadian Bioethics Society. He is As a result of this project, she was such as attending Ethics Committee currently preparing an empirical study invited to give the keynote address at meetings, and providing student of medical decision making in the National Symposium on Ethical representation for various committees neurointensive care in collaboration Issues in Genetic Research at National and programs such as the Jonathan with the Neurocritical Care Team of the Cheng Kung University in Tainan, King Lectureship Committee, the Arts, Stanford Stroke Center. Taiwan in January 2005. Sally also Humanities and Medicine Program and gave an informal informational talk the Medicine and the Muse about the Stanford Center for organizational committee. Julie Collier has started service- based rounds with the cardiovascular Biomedical Ethics that was attended by academic deans and others who are Eric Racine joined the Neuroethics surgery service and the pediatric intensive care service, attending as the interested in the possibility of using Imaging Group of the SCBE as a sole ethics consultant, which has not SCBE as a model for founding a similar postdoctoral fellow in July 2004 to previously been done in pediatrics. The center at National Cheng Kung pursue research on the ethical idea behind it is that if teams are helped University. Taiwan National challenges of contemporary to think through difficult situations a University also requested a talk about neuroscience. Prior to coming to little more clearly and earlier, the need the EDGE project. Stanford, Dr. Racine was research for a full ethics consult can be avoided. coordinator for several projects of the Julie is also working with a sub-group Other activities include service as a Bioethics Research Group dealing with of the pediatric ethics committee on review panelist for institutional grant public involvement in genomics developing ethical guiding principles applications submitted to the National research (Université de Montréal), and for pediatric organ transplants at Science Foundation’s STEP program to a member of Quebec’s national ethics LPCH. increase numbers of students selecting committee. His PhD thesis is an majors in science, technology, empirical study of the case analysis Larry Zaroff joined the SCBE engineering, and mathematics. Sally process in healthcare ethics committees was also invited to serve as a member faculty in April as a Senior Research (Université de Montréal). Dr. Racine of a Committee of Visitors charged Scholar. Larry is also a Consulting has done internships in clinical ethics in with reviewing the performance of the Professor in the Department of Geneva and in Montréal, and he has sat National Science Foundation’s Plant Anesthesiology and the Program in on ethics committees. He holds a BA in Genome Program. She serves as co- Human Biology. His research interests philosophy and political science chair of the Institutional Review Board have included pacemaker development, (University of Ottawa) and an MA in for the Northern California Cancer connections between literature and philosophy (Université de Montréal). Center and reviews all protocols medicine and the history of medicine. submitted to the General Clinical Larry teaches INDE 212 (The Human Since arriving at the SCBE, Dr. Racine Research Centers at Stanford Hospital Condition: Medicine, Arts, and has published with Dr. Judy Illes a and Lucille Packard Children’s Humanities) for the HumBio target article on the ethics of Hospital. neuroimaging in the American Journal concentration. In his spare time, he writes a column for the New York of Bioethics, and results of a press In addition to organizing the RCR Times Science Section. content analysis of brain imaging in course for 2005-2006 and introducing Congratulations to Larry for being Nature Reviews Neuroscience. With the the “Current Concepts and Dilemmas in selected to receive the Human Biology support of a postdoctoral fellowship Genetic Testing” course, Sally also Award for Excellence in Faculty from the Social Sciences and served as a guest lecturer in Human Advising by Stanford University. Humanities Research Council of Biology 154 (Cancer Epidemiology) on Canada, he is now conducting an the subject of balancing a family’s extensive and comparative analysis of Sally Tobin is currently involved in shared genetic heritage with individual neurotechnology in print media. He several projects. She has completed a choices about genetic testing for also joins projects led by Dr. Judy Illes new edition of the popular multimedia hereditary cancer risk. (P.I.) including the examination of courseware, “The New Genetics: ethical issues in the use of predictive Medicine and the Human Genome.” neuroimaging in Alzheimer’s Disease Approximately 3000 copies of the funded by the National Institute of original edition have been sold to Page 5 of 8 Stanford Bioethics, Vol. 2 No. 2

would serve on the committee for a in conjunction with Barbara Koenig, On the Move: period long enough to become they decided this would be her main Hellos and Goodbyes comfortable with the concepts of research focus while with SCBE, which ethical treatment of medicine and the has added an extra dimension. If there Margaret Eaton is retiring from values involved. When they got are issues that come up in the Center SCBE and the Ethics Committee, and enough time to become proficient, they that include the commercialization will be greatly missed. Of her many would rotate off the committee with the aspect, she will continue to be contributions to the development of the idea that they would take that new involved, which is good news for Center, her work with the Ethics understanding and incorporate it into SCBE! For instance, Margaret would Committee and her research into the their own medical practice. They like to examine the role of companies commercialization of biomedical would then start anew with fresh in developing and marketing stem cell processes and technologies stand out. members on the committee. This products in California. Because of Margaret’s background as process has increased the population of the hospital attorney and risk manager, clinicians with ethics training, and the Margaret believes her major she was able to look at the questions quality of care patients receive. This contributions are in the areas of dealt with on the Ethics Committee process has been in place almost three research on commercialization, and her from both a legal and an ethical years now and they have had work on the Ethics Committee. She perspective. She believes that because significant turnover. At the end of emphasizes that it took working in both the two are so closely linked, it’s every year decisions are made to fields—from a legal perspective and the almost impossible to view one without refresh the committee and put seasoned ethics perspective—for her to gain an the other. The problem is that if you members back into the community. appreciation of how rich this area is, take a legal view, often times you can and how necessary it is for a hospital end up in a situation where you are One regret for Margaret was that there and a medical school to have an ethics protecting yourself from liability, but was never time or funding to get department. She thinks David has you are not doing the right thing for the training in dispute resolution really expanded both of these roles and patient. On the other hand, sometimes techniques. Often the ethics consult the Center is in really good hands when you feel like you are service takes place in a climate of because of him. Everyone at SCBE accommodating what you think are the dispute between doctor and patient, feels that Margaret Eaton will be patient’s best interests, you can risk patient and family, physicians and remembered for playing a major role in running afoul of the law or having family, doctors and nurses. With SCBE’s development, and she will somebody sue you because you are mediation skills, in addition to their truly be missed. either advising that the patient not ethics training, she thinks the process of receive treatment or that they are going what they do could be a lot smoother Azumi Tsuge , Ph.D., was a Visiting to get treatment for which they haven’t and it would be much less traumatic. Scholar at the SCBE as well as the consented. What she tried to do was Even so, the committee is on a very Institution for Research on Women focus on the question of the ethical good path. David Magnus has taken Studies and Gender. She is a Medical thing to do, but keep in mind the legal over and improved things even further. Anthropologist and Professor at the implications of that choice. Margaret Department of Sociology, Meijigakuin was able to bring that perspective to the University, Tokyo. Her primary ethics committee, believing that the research interest is the analysis of worst thing would be to advise the socio-cultural factors on the decision- committee of something that they making process of patients assessed by thought was ethically sound, but which interview and observation methods. would run directly counter to the She will be returning to Japan in early law—more or less an unethical piece of September. advice. It was a fine line they walked, and an extremely fascinating one, Katie Alton joins SCBE as the

though not always easy. In fact, most Program Manager for the Neuroethics of the time it was pretty difficult to A unique contribution Margaret made Imaging Group. She is a graduate of accomplish. to the Center was to examine Mount Holyoke College, where she biomedical research and technologies in studied Neuroscience and Behavior, On the Ethics Committee, Margaret, in the context of commercialization. It is and Philosophy. Katie's current conjunction with Jose Maldonado, co- a fairly neglected area and most of the research focuses on regenerative chair, made a major contribution by time there are dialogues and debates, medicine and neuroimaging. broadening the membership of the for example, the ELSI Program at the committee, making it more inclusive. Human Genome Project. They wanted Paula Bailey joined SCBE earlier They generated an environment which an inclusive national and public debate this year as Education Coordinator. fostered more open dialogue, counter to and dialogue about the impact of She has a B.S. in Education and an the more traditional culture of hierarchy sequencing the human genome, and M.A. in Organizational Management, in medicine. The method adopted for included everybody—patients, with over twenty years of experience in ethical debate required everybody at the physicians, healthcare providers, the management of learning and table to participate. Much richer genetic counselors, judges, patient organizational development programs information is gathered with this advocacy groups—but they left out the in several high-tech corporations, process, especially when trying to do industry that was going to make working closely with senior leaders to what is best for the patient. Ultimately, products that stem from the human achieve organizational goals. Paula has Margaret feels, this method made the genome knowledge. That was a big also been a consultant to the Stanford discussions better. hole. Because she had worked in the Center for Professional Development, pharmaceutical industry before, marketing their courses to Silicon Another improvement was a constant Margaret knew about the process, and Valley managers and engineers. renewal of the membership. Members Stanford Bioethics, Vol. 2 No. 2 Page 6 of 8

On the Move (Continued) Recent Publications joins SCBE as CIRGE Angie Boyce Braddock CH, Snyder J. “The doctor will see you shortly” The ethical significance of time for Program Manager. Angie obtained her the patient-physician relationship. Journal of General Internal Medicine, In press. A.B. in History and Science, Magna Cum Laude in 2003 from Harvard Staiger TO, Jarvik JG, Deyo RA, Martin B, Braddock CH. Patient-Physician Agreement as a University. She also earned a Predictor of Outcomes in Patients with Back Pain. Journal of General Internal Medicine, In certificate in Mind, Brain, and press. Behavior. She was the recipient of the Harvard National Scholarship, the John Woolf SH, Chan EC, Harris R, Sheridan SL, Braddock CH 3rd, Kaplan RM, Krist A, Harvard Scholarship, and the Thomas O'Connor AM, Tunis S. Promoting informed choice: transforming health care to dispense T. Hoopes Prize for her thesis entitled knowledge for decision making. Ann Intern Med. 2005 Aug 16;143(4):293-300. "Super(able) Man: Figures of Aggression and Violence in Bioscience Braddock CH 3rd, Eckstrom E, Haidet P. The "new revolution" in medical education: fostering and Culture." She has also completed professionalism and patient-centered communication in the contemporary environment. J Gen coursework in the MIT Program in Intern Med. 2004 May;19(5 Pt 2):610-1. Science, Technology, and Society (2003-2004). Most recently she has Smith S, Fryer-Edwards K, Diekema DS, Braddock CH 3rd. Finding effective strategies for worked at the Museum of Science in teaching ethics: a comparison trial of two interventions. Acad Med. 2004 Mar;79(3):265-71. Boston, conducting front-end, formative, and summative evaluations Merz, JF and Cho, MK What are gene patents and why are people worried about them? of technology-related exhibits and Community Genetics (in press). programs. Sankar, P, Wolpe, PR, Jones, NL and Cho, M How do women decide? Accepting or declining Jen McCormick joins SCBE as BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genetics(in post-doctoral fellow. Her educational press). background includes a bachelor’s in biology, a doctorate in biology, and a Cho, MK and Sankar, P. Forensic genetics: ELSI beyond the clinic. Nature Genetics 2004; master’s in public policy. Her graduate 36 Suppl 1:S8-S12. work and a postdoctoral fellowship in biological chemistry were all completed Greely, HT Regulating Human Biological Enhancements: Questionable Justifications and at the University of Michigan. This International Complications, University Of Technology, Sydney, Law Review/Santa Clara past year, Jen was a lecturer at the Journal Of International Law (joint issue) (forthcoming 2005) University of Michigan, teaching and serving as course coordinator for two Greely, HT The Social Consequences of Advances in Neuroethics: Legal Problems; Legal courses in national science policy. Perspectives, In: Neuroethics In The Twenty-First Century (Judy Illes, ed., Oxford University Recent/current activities include Press, forthcoming 2005) examining the impact of the August 9, 2001 hESC policy on hESC research Greely, HT Banning Genetic Discrimination, New Eng. J. Med 2005; 353:865-67. with Jason Owen-Smith (UM) and co- authoring a book on national science Greene, M, Schill, K, Takahashi, S, Bateman-House, A, Beauchamp, T, Bok, H, Cheney, D, policy with Homer Neal (UM) and Coyle, J, Deacon, T, Dennett, D, Donovan, P, Flanagan, O, Goldman, S, Greely, H, Martin, L, Toby Smith (AAU). Miller, E, Mueller, D, Siegel, A, Solter, D, Gearhart, J, McKhann, G, Faden, R. Moral Issues of Human-Non-human Primate Neural Grafting, Science 2005; 309:385-386. Holly Tabor joins SCBE as post- doctoral fellow. Holly received her Greely, HT Lessons from the HGDP?, review of Race To The Finish: Identity And PhD in Epidemiology with a minor in Governance In The Age Of Genomics by Jenny Reardon, Science 2005; 308:1554-55. Genetics at Stanford in 2002. Her research focused on candidate gene Greely, HT Terri Schiavo, (letter to the editor), THE ECONOMIST (April 7, 2005) approaches to the study of complex diseases and traits, including heart Greely, HT Premarket Approval Regulation for Lie Detection: An Idea Whose Time May Be disease, resistance to HIV infection, Coming, Am J Bioethics 5(2):50-52 (March-April 2005). and autism. From 2002-2005 Holly was a Senior Scientist at the Stanford Greely, HT Seeking More Goodly Creatures, Cerebrum, Vol. 6, no. 4, 49-58 (fall 2004) Human Genome Center, working with Rick Myers. There she directed the Illes, J., Kirschen, M.P., Karetsky, K., Kelly, M., Saha, A., Desmond, J.D., Raffin, T.A., Genetics Group in candidate gene Glover, G.H., Atlas, S.W. Discovery and disclosure of incidental findings on brain MRI in approaches to the study of heart research. Journal of Magnetic Resonance Imaging, 2004, 20:743-747. disease, hypertension, insulin resistance and Parkinson's Disease. Holly has also Illes, J. and Racine, E. Imaging or imagining? A neuroethics challenge informed by genetics. worked on large scale epidemiological American Journal of Bioethics, 2005, 5(2):1-14. studies at UCSF and at Brigham and Women's Hospital. Holly is interested Illes, J. A fish story? Brain maps, lie detection and personhood Cerebrum, Special Issue on in ethical issues involved in the study Neuroethics, The Dana Press, 2004, 6(4):73-80. of complex diseases. She is particularly interested in ethical issues surrounding Illes, J. (Ed.) Neuroethics in the 21st Century: Defining the Issues in Theory, Practice and autism. Holly lives in Mountain View Policy, Oxford University Press, Oxford, UK. In press. with her husband Eric and her sons Colin and Jasper. Illes, J., Atlas, S.W., Raffin, T.A. Imaging neuroethics for the imaging neurosciences. Neuroscience Imaging, In press. Page 7 of 8 Stanford Bioethics, Vol. 2 No. 2

Illes, J., Gallo, M., Kirschen, M.P. An ethics perspective on the use of transcranial magnetic stimulation (TMS) for human neuromodulation, In A. Pascual-Leone (Ed). TMS: Disrupting the brain to enhance human cognitive abilities. Special Issue of Behavioral Neurology, In press.

Illes, J. Neuroethics: In, J. Illes (Ed). Neuroethics in the 21st Century: Defining the issues in theory, practice and policy. Oxford University Press, Oxford, UK. In press. Illes, J., Racine, E., Kirschen, M.P. A picture is worth 1000 words, but which 1000? In, J. Illes (Ed). Neuroethics in the 21st Century: Defining the issues in theory, practice and policy. Oxford University Press, Oxford, UK. In press. Illes, J., Raffin T.A. No child left without a brain scan? Toward a Pediatric Neuroethics. Cerebrum, The Dana Press. In press.

Illes, J, De Vries, R, Cho, M and Schraedley-Desmond, P. From Genetics to Neuroethics: ELSI Priorities for Brain Imaging. American Journal of Bioethics. (In press)

Lee, SS. “Racializing Drug Design”: Pharmacogenomics and Implications For Health Disparities. American Journal of Public Health. Vol. 95 No. 12. December 2005.

Lee, SS, Mountain, Joanna, Koenig, Barbara A. “The Meanings of Race in the New Genomics.” Henderson, Gail E., Sue E, Estroff, Larry R. Churchill, Nancy M.P. King, Jonathan Oberlander, and Ronald P. Strauss (eds), The Social Contributions to Health, Difference and Inequality: The Social Medicine Reader 2nd Edition, Volume II. Duke University Press, 2005.

Lee, SS. Invited Review: “Personalized Medicine and Pharmacogenomics: Ethical and Social Challenges.” Personalized Medicine. 2(1): 29-35. 2005.

Lee, SS “Incidental Findings” of Race in Pharmacogenomics and the Infrastructure for Finding Differences in Biomedical Research. Conference Proceedings: Genetics and Health Disparities. Ann Arbor, Michigan. 2004.

Magnus, D., Cho, M., "Issues in Ocyte Donation for Stem Cell Research," Science, v.308, no. 5729, June 17, 2005. Deverka, P., Magnus, D. "From Genome to Drug: Ethical Issues," in J. Handen, ed. Industrialization of Drug Discovery, Taylor and Francis, 2005. Racine, E. Five challenges for healthcare ethics committees: Critical perspectives from a study of the case analysis process in Québec. Ethica Clinica, 2004, 36: 29-38.

Racine, E., Bar-Ilan, O. and Illes, J. FMRI in the public eye. Nature Reviews Neuroscience 2005, 6: 159-164.

Racine, E. Why and how take into account neuroscience in ethics: Toward anemergentist and interdisciplinary neurophilosophical approach. Laval théologique et philosophique, 2005, in press.

Ziedalski T.M., Raffin, T.A., Sze, D.Y., Mitchell, J.D., Robbins, R.C., Theodore, J., Faul, J.L. Chylothorax after heart/lung transplantation. Journal of Heart and Lung Transplantation. 2004; 23(5):627-631.

Davis KK, Faul JL, Berry GJ, Raffin, T.A. Thoracic lymphatic disorders. Lymph Res Biol 2004;2(3):131-7.

Caron L, Karkazis K, Raffin, T.A., Swan, G., Koenig, B.A. Nicotine addiction through a neurogenomic prism: Ethics, public health, and smoking. Nicotine and Tobacco Research 2005 (In Press).

Ryu, J.H., Moss, J., Beck, G.J., Lee, J.C., Brown, K.K., Chapman, J.T., Finlay, G.A., Olson, E.J., Ruoss, S.J., Maurer, J.R., Raffin, T.A., McCarthy, K., Taveira-DaSilva, A., McCormack, F.X., Avila, N.A., DeCastro, R., Jacobs, S.S., Stylianou, M., Fanburg, B.L., for the NHLBI LAM Registry Group. The NHLBI Lymphangioleiomyomatosis Registry: Baseline characteristics of 230 patients. Am J Resp Crit Care Med (In Press)

Shafer A. Borkovi T, Barr J. Literature and Medical Interventions: An experiential course for undergraduates. Family Medicine 37(7):469-71, 2005

Shafer A. The Recovery Room Veteran. (poem) In: Writing the Medical Experience (accepted for publication)

Shafer A. Incompatibility (poem) Second Opinion: An Anthology of Poems by Physicians edited by Belli A and Coulehan J. Iowa City, Iowa: Univ. of Iowa Press (accepted for publication)

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Zaroff, L. Cool Heads and Cold Hearts. New York Times, Feb. 22, 2005.

Zaroff, L. Far From the Medical Trenches, It's O.K. to Laugh. New York Times. April 26, 2005.

Zaroff, L. In the Operating Room, Matters of Heart and Spirit. New York Times June 21, 2005.

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Stanford Center for SCBE Upcoming Events Biomedical Ethics

Faculty and Academic Staff: September 6, 2005, 12:00 pm: Grand Rounds in Biomedical Ethics Director: David Magnus, PhD “The Ethics of Organ Transplantation” Director Emeritus: Thomas Raffin, MD David Magnus, PhD Room M-104, Medical School Associate Director: Mildred Cho, PhD Steering Committee Chair: Henry Greely, JD October 4, 12:00 pm: Grand Rounds in Biomedical Ethics Faculty: “An Issue of Trust: Addressing Conflicts of Interest in Research” Clarence Braddock, MD, MPH Leslie Wolf, J.D., M.P.H. Julie Collier, PhD Room M-104, Medical School LaVera Crawley, MD, MPH Maren Grainger-Monsen, MD October 4, 2005, 5:00 pm: Henry Greely, JD Fall Forum on Community Health & Public Service Judy Illes, PhD Sheri Fink, MD, PhD Agnieszka Jaworska, PhD Frances C. Arrillaga Alumni Center Sandra Soo-Jin Lee, PhD Jose Maldonado, MD, FAPM, FACFE Audrey Shafer, MD October 26, 2005, 5:00 pm: Sara Tobin, PhD, MSW Jonathan King Lecture Lawrence Zaroff, MD, PhD Neal Baer, M.D. “Doctors as Storytellers” Administrative and Research Staff: Fairchild Auditorium Assistant Director: Anne Footer, MS November 1, 12:00 pm: Administrative Assistant: Joyce Prasad Grand Rounds in Biomedical Ethics Jim Hallenbeck Education Coordinator: Paula Bailey, MA Room M-104, Medical School Grants Manager: Shobha Kumar November 17, 2005, 8:00 am: Research Staff: Kovitz Lecture Katie Alton Medicine Grand Rounds Angie Boyce Ezekiel Emanuel, MD, PhD Raina Glazener Fairchild Auditorium Katrina Karkazis, PhD, MPH Jennifer McCormick, PhD, MPP December 6, 12:00 pm: Eric Racine, MA, PhD Grand Rounds in Biomedical Ethics Holly Tabor, PhD Therese Jones, Ph.D. Room M-104, Medical School Editor-in-Chief: Mildred Cho, PhD Managing Editor: Paula Bailey, MA

Stanford Center for Biomedical Ethics 701A Welch Road, Suite A-1105 Palo Alto, CA 94304