Appendix C
Biosketches of Committee Members
Jeffrey P. Kahn, Ph.D., M.P.H. (Chair), is Robert Henry Levi and Ryda Hecht Levi professor of bioethics and public policy at the Johns Hopkins Berman Institute of Bioethics. He works in a variety of areas of bioethics, exploring the intersection of ethics and health and science policy, including human and animal research ethics, ethics and public health, and ethical issues in emerging biomedical technologies. Professor Kahn is co–principal investigator on a National Institutes of Health (NIH) Center of Excellence project studying the ethical, legal, and social implications of genomic research in the context of infectious disease. He was founding president of the Association of Bioethics Program Directors, a position he held from 2006 to 2010; is an elected fellow of The Hastings Center; and is currently chair of the National Academies of Sciences, Engineering, and Medicine’s Board on Health Sciences Policy. Professor Kahn has published 3 books and more than 115 articles, and speaks frequently across the United States and around the world on a range of bioethics topics. Prior to joining the faculty at Johns Hopkins, he was director of the Center for Bioethics at the University of Minnesota. His education includes a B.A. in microbiology from the University of California, Los Angeles (UCLA), a Ph.D. in philosophy from Georgetown University, and an M.P.H. from the Johns Hopkins Bloomberg School of Public Health.
Jeffrey R. Botkin, M.D., M.P.H., is professor of pediatrics at the University of Utah and adjunct professor of human genetics. He is chief of the Division of Medical Ethics and Humanities and serves as associate vice president for research integrity, with oversight responsibilities for the human
subjects protection program. Dr. Botkin received his undergraduate degree from Princeton University, his M.D. from the University of Pittsburgh, and his M.P.H. from Johns Hopkins University. His research is focused on the ethical, legal, and social implications of genetic technology, with a particular emphasis on research ethics, genetic testing for cancer susceptibility, biobanking, newborn screening, and prenatal diagnosis. Dr. Botkin is currently chair of the U.S. Department of Health and Human Services (HHS) Secretary’s Advisory Committee on Human Research Protections. He also is a member of the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children and a former chair of the Committee on Bioethics for the American Academy of Pediatrics. He chairs NIH’s Embryonic Stem Cell Eligibility Working Group and serves on the U.S. Food and Drug Administration’s (FDA’s) Pediatric Ethics Subcommittee. Dr. Botkin is an elected Fellow of The Hastings Center.
David C. Chan, M.D., Ph.D., is professor of biology at the California Institute of Technology. The primary focus of Dr. Chan’s research is on understanding the role of mitochondrial dynamics in normal cellular function and human disease, particularly neurological disorders. Stemming from this work, he is a member of NIH’s Membrane Biology and Protein Processing Study Section. He has also served on NIH’s Structure and Function Study Section, on the Scientific and Medical Advisory Board of the United Mitochondrial Disease Foundation, and as co-chair of the Keystone meeting “Mitochondrial Dynamics and Physiology.” Dr. Chan has received numerous awards in his academic career, including Howard Hughes Medical Institute Investigator, Mitochondrial Research Society Young Investigator, Ellison Medical Foundation Senior Scholar, Beckman Young Investigator, Rita Allen Foundation Scholar, and Bren Scholar. He was awarded the Burroughs Wellcome Fund Career Award in the Biomedical Sciences. Dr. Chan received his M.D./Ph.D. at Harvard Medical School under Philip Leder. After Harvard, he went on to perform postgraduate work with Peter Kim at the Whitehead Institute for Biomedical Research, work that clarified how the HIV1 virus enters human cells.
R. Alta Charo, J.D., is Warren P. Knowles professor of law and bioethics at the University of Wisconsin–Madison, where she is on the faculty of the law and medical schools. Professor Charo teaches in the areas of bioethics, public health law, and biotechnology policy, and has been a member of the university’s institutional review board (IRB) and clinical ethics committee. She served on President Obama’s transition team, focused particularly on transition issues related to NIH and FDA, and from 2009 to 2011 was on leave to serve as a senior policy adviser on emerging technology issues in the Office of the Commissioner at FDA. Ms. Charo’s advisory committee
service for the federal government includes the 1994 NIH Human Embryo Research Panel and President Clinton’s National Bioethics Advisory Commission (1996 to 2001). In 2006 she was elected to membership in the National Academy of Medicine, where she now serves on its Council. At the National Academies of Sciences, Engineering, and Medicine, she has been a member of the Board on Life Sciences, Board on Population Health and Public Health Practices, and the Board on Health Sciences Policy. Professor Charo co-chaired the committee on guidelines for embryonic stem cell research, and is now co-chair of the committee on human gene editing. She received her B.A. in biology from Harvard University in 1979 and her J.D. from Columbia University in 1982.
James Childress, Ph.D., is university professor and John Allen Hollingsworth professor of ethics at the University of Virginia, where he directs the Institute for Practical Ethics and Public Life. At the University of Virginia, he is also professor of religious studies in the College and Graduate School of Arts and Sciences and professor of research in medical education in the School of Medicine. His research interests include theory and method in biomedical ethics and the role of biomedical ethics in public policy. He is a member of the National Academy of Medicine, where, among other activities, he previously chaired the Health Sciences Policy Board, the Institute of Medicine (IOM) Committee on Increasing the Rates of Organ Donation (2006), and the IOM Planning Committee for a Workshop on Military Medical Ethics: Issues Regarding Dual Loyalties (2008). Dr. Childress was vice chair of the National Task Force on Organ Transplantation, and also served on the Board of Directors of the United Network for Organ Sharing (UNOS), the UNOS Ethics Committee, the Biomedical Ethics Advisory Committee, the NIH Recombinant DNA Advisory Committee, and several data and safety monitoring boards for NIH clinical trials. In 1996, President Clinton appointed him to the National Bioethics Advisory Commission. Dr. Childress is also a fellow of the American Academy of Arts and Sciences, as well as of The Hastings Center, and he has been Joseph P. Kennedy Sr. professor of Christian ethics at the Kennedy Institute of Ethics at Georgetown University. He received his B.A. from Guilford College, his B.D. from Yale Divinity School, and his M.A. and Ph.D. from Yale University.
Alan DeCherney, M.D., received his bachelor’s degree in natural sciences from Muhlenberg College in Allentown, Pennsylvania, where he served on the Board of Trustees from 2006 to 2010. He received his M.D. from Temple University School of Medicine. He also holds an honorary master of arts degree from Yale University. Dr. DeCherney performed a research fellowship in immunology at the Lister Institute in London, England, as well as an internship in medicine at the University of Pittsburgh, followed
by a residency in obstetrics and gynecology at the University of Pennsylvania. He is currently associate clinical director and branch chief for reproductive endocrinology and gynecology in the intramural program of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at NIH. Previously, he was John Slate Ely professor of obstetrics and gynecology at Yale and division director of reproductive endocrinology and infertility and women’s health services and Phaneuf professor and chair of obstetrics and gynecology at Tufts University School of Medicine from 1991 to 1996. He was director of the Division of Reproductive Endocrinology at the David Geffen School of Medicine at UCLA from 1996 to 2006 and was chair of the Department of Obstetrics and Gynecology from 1996 to 2002. Dr. DeCherney is a fellow of the American College of Obstetricians and Gynecologists; past president of the American Society for Reproductive Medicine; and past president of the Society for Reproductive Endocrinology and Infertility, the Society of Reproductive Surgeons, and the Society of Assisted Reproductive Technology. He is a member of the American Gynecological and Obstetrical Society and past president of the Society for Gynecologic Investigation. He is the recipient of the President’s Achievement Award of the Society of Gynecologic Investigation. Dr. DeCherney was former editor-in-chief of the journal Fertility and Sterility, an associate editor and editorial board member of the New England Journal of Medicine, and a member of the Editorial Board of Obstetrics and Gynecology. He served as a member of the American Board of Obstetrics and Gynecology and the Division of Reproductive Endocrinology and Infertility and is a fellow ad eundem of the Royal College of Obstetrics and Gynecology. He has been a National Academy of Medicine member since 2004, and he served as chair of the IOM Interest Group on Maternal & Child & Human Development.
Marni J. Falk, M.D., received her B.S. degree in biology and her medical degree in a combined 7-year program from the George Washington University School of Medicine. She then completed dual specialty training in a combined 5-year pediatrics and clinical genetics residency program at Case Western Reserve University and University Hospital of Cleveland in Cleveland, Ohio. She has been assistant professor since 2006 in the Division of Human Genetics in the Department of Pediatrics at The Children’s Hospital of Philadelphia (CHOP) and University of Pennsylvania (UPenn) Perelman School of Medicine. Board certified in clinical genetics and pediatrics, Dr. Falk established and directs the CHOP Mitochondrial-Genetics Diagnostic Clinic to aid in the evaluation and management of individuals of all ages with suspected mitochondrial disease. She is actively involved in developing improved diagnostic approaches and resources for mitochondrial disease, including organization of a global Mitochondrial Disease Sequence
Data Resource (MSeqDR) consortium. Dr. Falk is principal investigator for an NIH-funded translational research laboratory at CHOP that investigates the causes and global metabolic consequences of mitochondrial disease, as well as targeted pharmacologic therapies, in C. elegans, zebrafish, mouse, and human tissue models of genetic and pharmacologic-based respiratory chain dysfunction. She has authored more than 70 publications in the areas of human genetics and mitochondrial disease. Dr. Falk also organized and directs the CHOP/Penn Mitochondria Research Affinity Group. She is a member and former chair of the Scientific and Medical Advisory Board and former Board of Trustees member of the United Mitochondrial Disease Foundation; a member of the Scientific Advisory Board of the nonprofit Genesis Project; a founding member of the CHOP Center for Mitochondrial and Epigenomic Medicine; CHOP-site principal investigator for the North American Mitochondrial Disease Consortium; a member of the Mitochondrial Congressional Caucus, Mitochondrial Medicine Society, Mitochondrial Research Society, Society for Pediatric Research, Society of Inherited Metabolic Disease, and American Society of Human Genetics; and a fellow of the American College of Medical Genetics and Genomics.
Jonathan Kimmelman, Ph.D., holds a doctorate in molecular biophysics and biochemistry from Yale University and is associate professor in biomedical ethics at McGill University, with a cross-appointment in experimental medicine. His research centers on the ethics of translational clinical research. He leads several funded projects investigating risk-benefit across the research trajectory, and directs the Studies for Translation, Ethics, and Medicine (STREAM) Group. Major publications have appeared in Science, Lancet, British Medical Journal, PLoS Medicine, and Hastings Center Report. His book Gene Transfer and the Ethics of First-in-Human Experiments (Cambridge Press, 2010) is the first full-length analysis of the ethics of translational clinical research and has been described as “set[ting] a new standard for bioethical scholarship that is at once scientifically well-grounded, politically astute, philosophically original, and a pleasure to read.” Dr. Kimmelman was the winner of the 2006 Maud Menten New Investigator Prize (Institute of Genetics), received a Canadian Institutes of Health Research New Investigator Salary Award in 2008, and was a Humboldt-Bessel Award Winner in 2014. He has served in numerous advisory capacities, including as ethics committee chair for the American Society of Gene and Cell Therapy (2008-2010) and the International Society of Stem Cell Research (since 2013). He is a member of the National Heart, Lung, and Blood Institute Gene and Cell Therapy data safety monitoring board.
Anna C. Mastroianni, J.D., M.P.H., is professor of law at the University of Washington School of Law. She holds additional faculty appointments in
the university’s School of Public Health and School of Medicine and at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital. Prior to her academic career, she held a number of legal and federal policy positions in Washington, DC, including staff leadership positions with a presidential commission and the IOM, and served as a practicing attorney with law firms specializing in health law. She has served on a number of committees that advise the U.S. government and other entities, including the National Academies of Sciences, Engineering, and Medicine. She also served on the NIH Recombinant DNA Advisory Committee. She has been nationally recognized for her contributions to health policy, law, and bioethics as a fellow of the American Association for the Advancement of Science. Her publications include six books and numerous peer-reviewed articles on law, medicine, and bioethics, with a special emphasis on the legal and ethical challenges in public health, research with human subjects, and assisted reproductive technologies. Professor Mastroianni is a graduate of the University of Pennsylvania’s School of Law (J.D.), The Wharton School (B.S), the College of Arts and Sciences (B.A.), and the University of Washington School of Public Health (M.P.H.).
Vamsi K. Mootha, M.D., is an investigator for the Howard Hughes Medical Institute, professor of systems biology and medicine at Harvard Medical School, and institute member of the Broad Institute. He runs a research laboratory located dually at Massachusetts General Hospital and the Broad Institute. Dr. Mootha’s research is focused primarily on the mitochondrion, the “powerhouse of the cell,” and its role in human disease. During the past decade, his research team has applied the new tools of genomics and systems biology to dissect the organelle’s physiology in health and in disease. His team has characterized the mitochondrial proteome, identified transcriptional circuits controlling the organelle’s biogenesis, discovered the molecular identity of the mitochondrial calcium uniporter, and identified more than one dozen Mendelian disease genes. Dr. Mootha received his undergraduate degree in mathematical and computational science at Stanford University, where he graduated Phi Beta Kappa with highest honors. He received his M.D. in 1998 from Harvard Medical School in the Harvard-Massachusetts Institute of Technology (MIT) Division of Health Sciences and Technology, where his thesis work was focused on mitochondrial bioenergetics. He subsequently completed his internship and residency in internal medicine at Brigham and Women’s Hospital in 2001, after which he completed postdoctoral fellowship training at the Whitehead Institute/MIT Center for Genome Research from 2001 to 2004. He has received numerous honors, including a MacArthur Foundation Fellowship, election to the U.S. National Academy of Sciences, and a 2014 Padma Shri from the Government of India.
Laurie Strongin is founder and executive director of the Washington, DC-based Hope for Henry Foundation, which improves the quality of life of children with cancer and other serious illnesses at hospitals in Washington, DC, and around the country. Since 2003, Hope for Henry has served more than 14,000 children. Ms. Strongin also acts as a family advocate in the national discussion of ethics and genetics. For 25 years, she has helped draw attention and resources to issues of emerging national significance. In 1996, she became drawn through personal experience into the frontlines of a breakthrough medical procedure that held the promise of saving her son, among countless other children. Turning her advocacy and media skills to that issue, she participated in national medical policy panels; worked with then-House Democratic Leader Nancy Pelosi and Congresswoman Diana DeGette to urge Senate passage of the Stem Cell Research Enhancement Act; secured coverage of the issue on ABC’s Nightline and in a Sunday New York Times Magazine cover story; authored “Vetoing Henry,” a Washington Post op-ed criticizing President Bush’s 2006 veto of federal funding for human embryonic stem cell research; and advocated for parental perspectives on NBC, the CBS Early Show, and MSNBC. Ms. Strongin has also participated as a panelist and guest lecturer in forums hosted by the Johns Hopkins Genetics and Public Policy Center. In 2009, when President Obama lifted the ban on federal funding for stem cell research, she was one of a few dozen honored guests. Her subsequent memoir, Saving Henry (Hyperion 2010), has been featured on a number of television programs and in USA Today and The Washington Post. Since the book’s publication, Ms. Strongin has headlined more than 60 speaking engagements across the United States.
Keith A. Wailoo, Ph.D., is Townsend Martin professor of history and public affairs at Princeton University. He is appointed in history and in the Woodrow Wilson School of Public and International Affairs, where he also served as vice dean from 2013 to 2015. He is a historian of medicine and the biomedical sciences and is the author of many books, including Pain: A Political History; How Cancer Crossed the Color Line; The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease; Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health; and Drawing Blood: Technology and Disease Identity in Twentieth Century America. Dr. Wailoo has also organized and edited numerous interdisciplinary studies on contemporary health and public policy, including Medicare and Medicaid at 50: America’s Entitlement Programs in the Age of Affordable Care; Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine’s Simple Solutions; and Genetics and the Unsettled Past: The Collision of DNA, Race, and History. His writings have also appeared in Lancet; The New
York Times; American Prospect; The Journal of Health Politics, Policy, and Law; and the Bulletin for the History of Medicine. In 2007, he was elected to the National Academy of Medicine, where he was also a member of the Health Sciences Policy Board and served on the Committee on Increasing Rates of Organ Donation. His research has been supported by the Robert Wood Johnson Foundation, NIH, the National Science Foundation, the James S. McDonnell Foundation, and the Burroughs-Wellcome Fund. At Princeton, Dr. Wailoo teaches on the history of race, drugs and drug policy, modern genetics and public policy, and a range of other topics in history and health policy. Before joining the Princeton faculty, he taught in history and in social medicine (in the medical school) at the University of North Carolina at Chapel Hill and at Rutgers University, where he was founding director of the Center for Race and Ethnicity. Dr. Wailoo holds a Ph.D. in the history and sociology of science from the University of Pennsylvania and a bachelor’s degree in chemical engineering from Yale University.
