Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research (2009)

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Appendix C Committee Member and Staff Biographies COMMITTEE MEMBER BIOGRAPHIES Lawrence O. Gostin, J.D. (Chair) is an internationally recognized scholar in law and public health. He is an elected member of the Institute of Medicine of the National Academies and an elected fellow of the Hastings Center. At the National Academies, he has served on the Board on Population Health and Public Health Practice, as well as many committees, including as Chair of the Committee on Genomics and the Public’s Health in the 21st Century and Chair of the Committee on Ethical Considerations for Revisions to HHS Regulations for Protection of Prisoners Involved in Research. Profes- sor Gostin is the Health Law and Ethics Editor of the Journal of the Ameri- can Medical Association and serves on the editorial boards of many other scholarly journals. His recent books have included: The AIDS Pandemic: Complacency, Injustice, and Unfulfilled Expectations (2004), The Human Rights of Persons with Intellectual Disabilities: Different But Equal (2003, with S. S. Herr, H. H. Koh, eds.), Public Health Law and Ethics: A Reader (2002), and Public Health Law: Power, Duty, Restraint (2000). He cur- rently works as a Professor of Public Health at Johns Hopkins University, and as Professor of Law and Director of the Center on Law and the Public’s Health at the Georgetown University Law Center. Paul S. Appelbaum, M.D., is the Elizabeth K. Dollard Professor of Psychiatry, Medicine, and Law, and Director, Division of Psychiatry, Law, and Ethics, Department of Psychiatry, College of Physicians and Surgeons of Columbia University. He is the author of many articles and books on 0 

0 BEYOND THE HIPAA PRIVACY RULE law and ethics in clinical practice, including four that were awarded the Manfred S. Guttmacher Award from the American Psychiatric Association and the American Academy of Psychiatry and the Law. Dr. Appelbaum is Past President of the American Psychiatric Association, the American Acad- emy of Psychiatry and the Law, and the Massachusetts Psychiatric Society, and serves as Chair of the Council on Psychiatry and Law for the American Psychiatric Association. He was previously Chair of the Commission on Judicial Action for the American Psychiatric Association and a member of the MacArthur Foundation Research Network on Mental Health and the Law. He is currently a member of the MacArthur Foundation Network on Mandatory Outpatient Treatment. He has received the Isaac Ray Award of the American Psychiatric Association for “outstanding contributions to forensic psychiatry and the psychiatric aspects of jurisprudence,” was the Fritz Redlich Fellow at the Center for Advanced Study in the Behavioral Sciences, and has been elected to the Institute of Medicine. Dr. Appelbaum is a graduate of Columbia College, received his M.D. from Harvard Medi- cal School, and completed his residency in psychiatry at the Massachusetts Mental Health Center in Boston. Elizabeth Beattie, Ph.D., is a Professor, School of Nursing, Faculty of Health Sciences, The Queensland University of Technology. She was formerly a Research Compliance Associate at the Office of Human Research Compli- ance Review, University of Michigan, and an Adjunct Associate Professor in the Adult and Gerontology Nursing Program, University of Iowa. In her former role in regulatory affairs she was involved in compliance monitoring activities with human research studies in many disciplines, and in human subjects protection education and research. Prior to these positions, she was research faculty at the School of Nursing, University of Michigan. Her primary role was Project Director for several large multisite federally- funded projects focused on wandering behavior associated with dementia in long term care residents. As Project Director, she coordinated all aspects of the projects, including Institutional Review Board and Special Project Assurance requirements, site access, subject recruitment and informed con- sent procedures, research team training, data collection, and data coding. She served on the Institutional Review Board for Health Sciences for over 3 years. She was formally tenured foundation faculty in Australia at two new schools of nursing: The University of Technology and James Cook Uni- versity. Dr. Beattie received her Ph.D. (Nursing Science) in a unique arrange- ment between the University of Michigan School of Nursing and James Cook University in Australia, and completed a fellowship at the Hartford Institute for Gerontological Nursing Research Summer Institute, New York University. She completed her Advanced Psychiatric Nursing Certificate at 

0 APPENDIX C the Bethlem Royal and Maudsley hospitals, London, United Kingdom. Dr. Beattie is a Fellow of the Gerontological Society of America. Marc Boutin, J.D., is the Executive Vice President at the National Health Council, an umbrella organization representing approximately 100 million people with chronic conditions. The Council promotes health care for all people, the importance of medical research, and the role of patient-based groups. Throughout Mr. Boutin’s career, he has been highly involved in health advocacy, policy, and legislation. He has designed and directed numerous strategies for issues ranging from access to health care to cancer prevention. Before joining the Council, Mr. Boutin served as the Vice Presi- dent of Government Relations and Advocacy at the American Cancer Soci- ety for New England and was a faculty member at Tufts University Medical School. In addition to senior government relations positions at Easter Seals and the Massachusetts Association of Health Boards, he was a civil rights litigator. Mr. Boutin received his Bsc. Econ. in International Politics/Law from the University College of Wales, Aberystwyth, United Kingdom, in 1989, and his J.D. from Suffolk University Law School in 1994. Thomas W. Croghan, M.D., is a Senior Fellow at Mathematica Policy Research, Inc., where his research concentrates on studying health care access and quality, adequacy of coverage, and outcomes for different groups, in addition to analyzing the capabilities of the health system to provide care for vulnerable populations. Dr. Croghan received his M.D. from West Vir- ginia University School of Medicine and undertook postdoctoral training at Johns Hopkins University and Stanford University. Prior to his position at Mathematica, he was a Senior Natural Scientist at the RAND Corpora- tion. He has directed many studies of health care access, quality, cost, and cost-effectiveness of medical treatments, including projects for the National Institutes of Health, Center for Multicultural Mental Health Research, U.S. Department of the Army, National Defense Research Institute, and Eli Lilly and Company. While at Lilly, he founded the Department of Health Services and Policy Research and served as Principal Project Officer for a National Bureau of Economic Research project that created price indexes for the treatment of depression and other conditions. He also initiated the Schizophrenia Care and Assessment Program, a prospective observational study of 2,400 persons with severe psychosis. In 1999, he received a Robert Wood Johnson Foundation Investigator Award in Health Policy Research for conceptualizing the social, economic, and cultural issues underlying health care outcomes. He has published widely and serves as a reviewer for many publications, including Health Services Research, Health Affairs, Archives of General Psychiatry, and the American Journal of Managed 

0 BEYOND THE HIPAA PRIVACY RULE Care. Board certified in internal medicine and rheumatology, Dr. Croghan practices primary care medicine at the Washington Free Clinic. Stanley W. Crosley, Esq., is Chief Privacy Officer at Eli Lilly and Company. Mr. Crosley initiated Lilly’s global privacy program, and he currently over- sees the company’s privacy program on a global basis across all company functions. He is a co-founder and Chairman of the Board of Directors of the International Pharmaceutical Privacy Consortium (IPPC) and is on the Executive Committee of the Center for Information Policy Leadership. He also sits on the Conference Board’s Chief Privacy Officers Council. Prior to his arrival at Lilly, Mr. Crosley worked at Armstrong Teasdale Schlafly & Davis in St. Louis, and at Ice Miller Donadio & Ryan where he concen- trated on technology, privacy, and eBusiness. Mr. Crosley earned his B.S. in Biology, with a minor in Chemistry, from Hillsdale College and his J.D. from Indiana University. Sandra J. Horning, M.D., is Professor of Medicine (Oncology and Bone Marrow Transplantation) at Stanford University School of Medicine in Stanford, California. She chairs the Lymphoma Committee of the Eastern Cooperative Oncology Group (ECOG), serving as senior investigator for multiple Phase II and III clinical trials. Her patient-oriented research in Hodgkin’s disease and lymphoma is supported by National Institutes of Health (NIH) and other peer-reviewed funding. Dr. Horning is active in a number of professional societies including the American Society of Clinical Oncology, where she is the Immediate Past President. She is a member of the NCI Clinical Trials Advisory Committee to the Director of the National Cancer Institute and served as a member of the NIH Clinical Oncology Study Section. Dr. Horning chairs the Scientific Review Committee at Stan- ford Cancer Center and she co-leads the program in lymphoma for the Cancer Center. She lectures nationally and internationally and serves on the steering committees for several international consortia. An advocate of new drug development, Dr. Horning has served on the Oncology Drug Advisory Board for the Federal Drug Administration. She currently serves on the editorial boards of Annals of Internal Medicine, Leukemia and Lymphoma, Clinical Lymphoma, and C.U.R.E. Dr. Horning earned her medical degree at the University of Iowa, after which she completed inter- nal medicine training at the University of Rochester. She also completed a medical oncology fellowship at Stanford University. James S. Jackson, Ph.D., is a Daniel Katz Distinguished University Professor of Psychology, Professor of Health Behavior and Health Education, School of Public Health, and Director of the Institute for Social Research; past Director of the Research Center for Group Dynamics, past Director of the 

0 APPENDIX C Program for Research on Black Americans, and past Director of the Center for Afroamerican and African Studies, all at the University of Michigan. He is past-Chair of the Section on Social, Economic, and Political Sci- ences of the American Association for the Advancement of Science (AAAS). He is a former Chair of the Section on Social and Behavioral Sciences and the Task Force on Minority Issues of the Gerontological Society of America, Committee on International Relations; Association for the Advancement of Psychology, and American Psychological Association. He was a recipient of a Fogarty Senior Postdoctoral International Fellowship, 1993–1994, for study in France and Western Europe. He has conducted research and published numerous books, scientific articles, and chapters on international, comparative studies on immigration, race and ethnic relations, physical and mental health, adult development and aging, attitudes and attitude change, and African American politics. He is former National President of the Black Students Psychological Association and the Association of Black Psycholo- gists. He is a Fellow of the Gerontological Society of America, the American Psychological Association, the Association of Psychological Sciences, and the American Association for the Advancement of Science. He is an elected a member of the Institute of Medicine. Dr. Jackson has been the principal investigator of more than two dozen NIH-funded and National Science Foundation (NSF) grants. He is currently directing the most-extensive social, political behavior, and health surveys on the American and Caribbean populations ever conducted; the National Institute of Mental Health, the National Institute on Aging, and the National Institute on Drug Abuse supported “National Survey of American Life” and “Family Survey Across Generations and Nations,” and NSF-supported “National Study of Ethnic Pluralism and Politics.” Mary Beth Joublanc, J.D., is the Chief Privacy Officer for the State of Arizona, Arizona Government Technology Agency. She was formerly the Chief HIPAA Compliance Officer for the Arizona Department of Health Services, Phoenix, Arizona. She is also the Chair for the Department’s Human Subjects Research Board. Ms. Joublanc is an active member of the State Bar of Arizona. Her legal practice focuses on regulatory compliance, health care law, risk management, and professional liability claims manage- ment. Ms. Joublanc has lectured on a variety of topics related to health law and risk management. She holds a B.S. in Health Information and, prior to law school, was a health information manager with experience in primary, secondary, and tertiary care. Bernard Lo, M.D., is Professor of Medicine and Director of the Program in Medical Ethics at the University of California, San Francisco (UCSF). He is National Program Director for the Greenwall Faculty Scholars Pro- 

0 BEYOND THE HIPAA PRIVACY RULE gram in Bioethics. He is Co-Chair of the Standards Working Group of the California Institute of Regenerative Medicine, which will recommend regulations for stem cell research funded by the state of California. He also serves on the Data and Safety Monitoring Committees for diabetes prevention trials and a HIV vaccine trial at the National Institute of Allergy and Infectious Disease. He is a member of the Ethics Working Group of the NIH-sponsorsed HIV Prevention Trials Network, which carries out clinical trials in developing countries. Dr. Lo is Co-Director of the Policy and Ethics Core of the Center for AIDS Prevention Studies at UCSF, which provides technical advice and consultation to researchers carrying out clini- cal research, including research in resource-poor nations. He is a member of the IOM and serves on the IOM Council. He has been involved in a number of studies on ethical issues in human participants research carried out by the IOM and the National Academy of Science (NAS). He chaired an IOM panel on confidentiality in health services research. He developed a course on Responsible Conduct of Research that 120 postdoctoral fellows and junior faculty take each year. He also carries out research on ethical issues in human participants research, end-of-life decisions, and stem cell research. He is a practicing general internist and attends on the inpatient medical service at UCSF. Andrew F. Nelson, M.P.H., is Executive Director of the HealthPartners Research Foundation and Vice President of HealthPartners. Mr. Nelson has provided leadership for this nonprofit, medical/health care research organization since its inception in 1990. He also serves as a Corporate Officer for HealthPartners, Inc. HealthPartners is an integrated health delivery system servicing over 725,000 people in Minnesota through a medical group of 650 providers, a large clinic system, and a 450-bed hospital. HealthPartners Research Foundation conducts more than 200 laboratory, clinical, and health services research projects annually, through 90 full-time staff, 25 full-time career researchers, and more than 45 clini- cal researchers. More than 350 of HealthPartners 10,000 employees are engaged in research and represent a broad array of medical, scientific, and administrative disciplines. Prior to the HealthPartners Research Foundation position, Mr. Nelson was a Research Development Officer for the University of Minnesota’s Health Sciences and Executive Director of the Day Community and Con- nections Programs at the University of Minnesota’s programs that serve emotionally and behaviorally disturbed adolescents. Mr. Nelson is a found- ing member and serves as Immediate Past Chair of the Board of Directors for the HMO Research Network, 15 research organizations with funding of more than $100 million. He serves on a wide range of professional and community committees and boards. 

0 APPENDIX C Marc Rotenberg, J.D., is president of the Electronic Privacy Information Center and Adjunct Professor of Law, Georgetown Law. He was counsel to Senator Patrick J. Leahy on the Senate Judiciary Committee, specializing in technology and law. Professor Rotenberg has testified before Congress on many issues, including access to information, computer crime, computer security, and privacy. In 2003, he testified before the 9-11 Commission on Security and Liberty. He is the Editor (with Daniel J. Solove and Paul Schwartz) of Information Privacy Law (Aspen Publishing, 2006), is the Edi- tor (with Phil Agre) of Technology and Privacy: The New Landscape (MIT Press, 1998), The Privacy Law Sourcebook: United States Law, Interna- tional Law and Recent Developments (Epic, 2005), and is on the editorial boards of BNA Electronic Commerce and Law and Computer Law and Security Reporter. Professor Rotenberg has served on advisory panels for the American Bar Association Section on Criminal Justice, the American Association for the Advancement of Science, the Austrian Institute for Law and Policy, the National Academy of Sciences, UNESCO, and the Organiza- tion for Economic Cooperation and Development. He chairs the American Bar Association Committee on Privacy and Information Protection. He is also Former Chair of the Public Interest Registry, which manages .ORG domain. He was a Teaching Fellow in computer science at Harvard Univer- sity from 1980 to 1982 and an instructor at Stanford University from 1986 to 1987. He received his A.B. cum laude from Harvard University and his J.D. from Stanford University. Wendy Visscher, Ph.D., is Director of RTI International’s Office of Research Protection and Ethics, where she oversees the operation of the three Insti- tutional Review Boards and chairs one of these committees. She maintains RTI’s Federalwide Assurance with HHS’s Office for Human Research Pro- tections. She earned her Certified IRB Professional rating in 2002. In addi- tion to her knowledge of human subjects protection, Dr. Visscher trains researchers on HIPAA and other data privacy requirements and regulations, and consults with RTI management on these and related issues. Dr. Visscher is also a trained epidemiologist with more than 20 years of health research experience. Her areas of expertise include: heart disease and diabetes in minority communities, drug use in pregnant women, children’s mental health, global burden of influenza, HIV, reproductive epidemiology, radia- tion and cancer, and patient outcomes studies. She received her Ph.D. in 1987 from the University of Minnesota. Fred Wright, M.D., has served as Associate Chief of Staff for Research (director of the research program) since 1984. He is a Staff Physician at the VA Connecticut Healthcare System and has also been Acting Chief of Staff in 1995 and 1998. He is a Professor in the Departments of Internal Medi- 

0 BEYOND THE HIPAA PRIVACY RULE cine and Cellular & Molecular Physiology at the Yale University School of Medicine. Dr. Wright received his A.B. and M.D. from the University of Michigan. He trained as a resident in medicine at the Johns Hopkins Hospital in Baltimore and as a postdoctoral trainee in kidney physiology at the National Institutes of Health in Bethesda, Maryland. He was then appointed to the faculty at Yale University where his research continued to focus on the structure and function of the kidney, with an emphasis on mechanisms of ion transport by kidney tubules in health and disease. He joined the medical staff at the West Haven VA Medical Center in 1997 and continued to be involved in laboratory research and teaching of medical students and advanced trainees. Clyde W. Yancy, M.D., is a cardiologist and heart failure/heart transplant specialist at Baylor University Medical Center at Dallas, where he is the medical director of the Baylor Heart and Vascular Institute, and chief of cardiothoracic transplantation at Baylor University Medical Center at Dallas. Previously, Dr. Yancy was a professor of internal medicine and cardiology and holder of the Carl Westcott Chair in Medical Research at the University of Texas Southwestern Medical Center in Dallas where he served as director of its heart transplant program. He also is credited with establishing the medical center’s heart failure program and cardiovascular institute. He holds fellowships in the American College of Cardiology, the American Heart Association, and the American College of Physicians. He is an active member of the American Heart Association, the American College of Cardiology, the International Society of Heart and Lung Transplanta- tion, and the American Society of Hypertension. Presently, he serves on the executive committee of the Heart Failure Society of America. He also sits on the editorial board of a number of professional journals. In 2003, he was recognized as physician of the year by the American Heart Association for leadership in programs related to its mission. He currently serves on the Cardiovascular Device Panel for the Food and Drug Administration and is a consultant to the National Heart, Lung, and Blood Institute. His research interests include the broad areas of heart transplantation, heart failure, and heart disease in special populations. Dr. Yancy received his M.D. from Tulane University School of Medicine and completed post-graduate training at the University of Texas Southwestern Medical Center. STAFF BIOGRAPHIES Sharyl Nass, Ph.D., is a Study Director and Senior Program Officer at the Institute of Medicine, where she has worked with the Board on Health Sciences Policy, Board on Health Care Services, and the National Cancer Policy Board and Forum. Her previous work at the IOM has focused 

0 APPENDIX C on topics that include developing cancer biomarkers, strategies for large- scale biomedical science, developing technologies for the early detection of breast cancer, improving breast imaging quality standards, and contracep- tive research and development. Her current position at the IOM combines her dual interests in biomedical research and health science policy. With a Ph.D. in Cell and Tumor Biology from Georgetown University and post- doctoral training at the Johns Hopkins University School of Medicine, she has authored numerous papers on the cell and molecular biology of breast cancer. She also holds a B.S. in Genetics and an M.S. in Endocrinology/ Reproductive Physiology, both from the University of Wisconsin–Madison. In addition, she studied developmental genetics and molecular biology at the Max Planck Institute in Germany under a fellowship from Fulbright and the German Heinrich Hertz-Stiftung Foundation. Dr. Nass was the 2007 recipient of the Cecil Award for Excellence in Health Policy Research. Laura Levit, J.D., is an Associate Program Officer for the Board on Health Care Services and the National Cancer Policy Forum. She started at the IOM as a Christine Mirzayan Science and Technology Graduate Fellow in winter 2007. In 2007, she received the IOM rookie award for her work with the National Cancer Policy Forum. She graduated from the University of Virginia School of Law in May 2006, and was admitted into the Virginia Bar Association in October 2006. She completed her undergraduate studies at the College of William and Mary, receiving a B.S. in Psychology. In law school, Ms. Levit worked for several different nonprofit organizations that focused on health and mental health care policy, including the World Fed- eration for Mental Health, the Treatment Advocacy Center, the Bazelon Center, and the National Research Center for Women & Families. Roger Herdman, M.D., received his undergraduate and medical school degrees from Yale University. Following an internship at the University of Minnesota and a stint in the U.S. Navy, he returned to Minnesota where he completed a residency in pediatrics and a fellowship in immunology and nephrology and served on the faculty at the University of Minnesota. He served as Professor of Pediatrics at Albany Medical College until 1979. In 1969, Dr. Herdman was appointed Director of the New York State Kidney Disease Institute in Albany, New York, and shortly thereafter was appointed Deputy Commissioner of the New York State Department of Health (1969–1977) and in 1977 was named New York State’s Director of Public Health. From 1979 until joining the U.S. Congress’s Office of Tech- nology Assessment (OTA), he served as a Vice President of the Memorial Sloan-Kettering Cancer Center in New York City. In December 1983, Dr. Herdman was named Assistant Director of OTA where he subsequently served as Director (1993–1996). He later joined the 

0 BEYOND THE HIPAA PRIVACY RULE IOM as a Senior Scholar and directed studies on graduate medical educa- tion, organ transplantation, silicone breast implants, and the Veterans Administration national formulary. Dr. Herdman was appointed Director of the IOM/National Research Council National Cancer Policy Board from August 2000 through April 2005. Beginning in May 2005, he has directed the IOM National Cancer Policy Forum, which includes federal and private-sector cancer relevant agencies or organizations in addition to academic/industry members. In October 2007, he was also appointed Director of the IOM Board on Health Care Services. During his work at the IOM, Dr. Herdman has worked closely with the U.S. Congress on a wide variety of health care policy issues. Andrew Pope, Ph.D., is Director of the IOM Board on Health Sciences Policy. He has a Ph.D. in Physiology and Biochemistry from the University of Maryland and has been a member of the National Academies staff since 1982 and of the IOM staff since 1989. His primary interests are science policy, biomedical ethics, and environmental and occupational influences on human health. During his tenure at the National Academies, Dr. Pope has directed numerous studies on topics that range from injury control, disability prevention, and biologic markers to the protection of human subjects of research, NIH priority-setting processes, organ procurement and transplantation policy, and the role of science and technology in counter- ing terrorism. Dr. Pope is the recipient of IOM’s Cecil Award and the NAS President’s Special Achievement Award. Michael Park is a Senior Program Assistant for the Board on Health Care Services and the National Cancer Policy Forum. Before arriving at the IOM in September of 2007, Mr. Park worked for the National Academy of Education and the International Law Group in Washington, DC. He earned his B.A. in German and Italian Studies from the University of Maryland at College Park. He is fluent in Spanish, Italian, and German.