Newborn Screening in the United States: A Vision for Sustaining and Advancing Excellence (2025)
Chapter: Appendix B: Committee Member and Staff Biographies
B
Committee Member and Staff Biographies
COMMITTEE MEMBERS
Jewel Mullen, M.D., M.P.A., M.P.H. (Chair), is associate dean for health equity and associate professor of population health and internal medicine at the University of Texas at Austin Dell Medical School where she leads strategies to embed health equity as an operating principle across research, education, and practice. Her previous roles in state government and as the Principal Deputy Assistant Secretary for Health at the Department of Health and Human Services focused on ensuring equitable access to medical and public health services for all people. During her tenure as Commissioner of the Connecticut Department of Public Health, her department built and opened a new public health laboratory and deliberated adding new conditions to its newborn screening panel. Dr. Mullen also collaborated with the Association of Public Health Laboratories to increase overall state laboratory efficiency. In addition to serving on the National Academies of Sciences, Engineering, and Medicine’s (the National Academies’) Board on Population Health and Public Health Practice, she is a current member of the Morbidity and Mortality Weekly Report Editorial Board and the National Vaccine Advisory Committee. Her two most recent National Academies study committees addressed A Fairer and More Equitable Cost-Effective and Transparent System of Donor Organ Procurement, Allocation, and Distribution, and Equitable Allocation of Vaccine for the Novel Coronavirus. Dr. Mullen received her bachelor’s and master of public health degrees from Yale University where she also completed a postdoctoral fellowship in psychosocial epidemiology, her M.D. from the
Mount Sinai School of Medicine, a master in public administration from Harvard’s Kennedy School of Government, and a certificate in bioethics from Georgetown’s Kennedy Institute of Ethics.
Don Bailey, Ph.D., M.Ed., is a distinguished fellow in the Genomics and Translational Research Center at RTI International. Before joining RTI in 2006, he was on the faculty of the University of North Carolina at Chapel Hill (UNC-CH) for 27 years, where he was a W. R. Kenan, Jr., Distinguished Professor and, for 14 years, Director of the Frank Porter Graham Child Development Institute. Dr. Bailey’s research addresses early identification and early intervention for children with disabilities, as well as family adaptation to disability. He has an extensive record of publications on topics related to newborn screening, early intervention, disability, and family support. Currently, his work focuses on the future of newborn screening, family outcomes of newborn screening, and policy considerations when determining net benefit of screening. He is a senior advisor for the Early Check program, a research study offering free additional screening tests to newborns in North Carolina. Early Check has multiple sources of support, including direct funding from the Leona M. and Henry B. Helmsley Charitable Trust, JDRF International (through a collaboration with Janssen Pharmaceuticals), Travere Therapeutics, and Orchard Therapeutics. Early Check previously received donated sequencing services from GeneDx and in-kind contributions from Illumina. Dr. Bailey’s work has previously been funded by companies including Asuragen, Janssen Pharmaceuticals, Orchard Therapeutics, Sarepta Therapeutics, Illumina, and Shionogi. Additionally, he has received travel support to present research findings from Travere Pharmaceuticals, PerkinElmer, and Janssen Pharmaceuticals. Dr. Bailey has presented research findings to organizations including the Association of Public Health Laboratories and EveryLife Foundation. From 2011 to 2017, he served as a member of the Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children. He holds a B.A. in psychology (Davidson College), an M.Ed. in early childhood special education (UNC-CH), and a Ph.D. in early childhood special education (University of Washington).
Mei Baker, M.D., FACMG, is a professor in the Department of Pediatrics and Director of the Newborn Screening Laboratory at the University of Wisconsin School of Medicine and Public Health. Dr. Baker practiced medicine before being trained in both biochemical and molecular genetics, obtaining a clinical biochemical genetics certification from the American Board of Medical Genetics and Genomics in 2009. She has 20 years of experience in routine newborn screening (NBS) with specific
interest in, and a successful track record of, applying emerging technologies to implement new screening tests for disorders and improving ongoing screening tests. She is one of the leading scientists who made Wisconsin the first state in the nation and the world to implement universal newborn screening for severe combined immunodeficiency in 2008. She has developed and implemented cystic fibrosis newborn screening using next-generation sequencing technology in the Wisconsin NBS program. She also implemented the newborn screening for spinal muscular atrophy in Wisconsin with the unique approach of incorporating additional SMN2 copy number assessment. Dr. Baker recently completed a research project supported by Ultragenyx to help develop a screening assay for Angelman syndrome. Dr. Baker’s contribution to science has been widely recognized, as evidenced by receiving the Harry Hannon Laboratory Improvement Award in Newborn Screening from the Association of Public Health Laboratories (APHL) in 2014, and Everyday Life Saver in Newborn Screening Award from the APHL in 2022. Dr. Baker served as a member of the Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children from 2016 to 2021. She currently serves on the scientific advisory boards for the Global Foundation for Peroxisomal Disorders and the Foundation for Angelman Syndrome Therapeutics.
Wendy K. Chung, M.D., Ph.D. (NAM), is a clinical and molecular geneticist and the Chair of the Department of Pediatrics at Boston Children’s Hospital and Harvard Medical School. Dr. Chung leads the GUARDIAN study piloting genome sequencing as a platform for newborn screening, which is funded by private philanthropy, in addition to sequencing services from GeneDx, in-kind contributions from Illumina, and funds for participant recruitment from Sanofi. She has also led previous pilot studies of newborn screening for spinal muscular atrophy. Dr. Chung directs National Institutes of Health–funded research programs in human genetics of pulmonary hypertension, breast cancer, obesity, diabetes, autism, and congenital anomalies including congenital diaphragmatic hernia and congenital heart disease. She is a national leader in the ethical, legal, and social implications of genomics. She was the recipient of the Rare Impact Award from the National Organization of Rare Disorders and is a member of the National Academy of Medicine and the American Academy of Physicians. She serves as a member on the Board of Directors for Prime Medicine, which is developing platform technologies for potential gene therapy applications. Dr. Chung received her B.A. in biochemistry from Cornell University, her M.D. from Cornell University Medical College, and her Ph.D. from the Rockefeller University in genetics.
Titilope A. Fasipe, M.D., Ph.D., is Codirector of the Sickle Cell and Thalassemia Program at Texas Children’s Hospital and assistant professor of pediatrics in hematology/oncology at Baylor College of Medicine in Houston, Texas. She is involved in community and policy efforts aimed at improving health outcomes in sickle cell disease. Further, she has the unique perspective of relating to and understanding the need for education, community awareness, support, and medical care as she is a pediatric hematologist as well as an individual with sickle cell disease. Dr. Fasipe has been repeatedly appointed to advisory committees of the Texas Department of State Health Services and currently serves on their Newborn Screening Advisory Committee and chairs the Sickle Cell Task Force. Her professional memberships include the American Academy of Pediatrics, the Heartland-Southwest Sickle Cell Disease Network, the American Society of Hematology, the American Society of Pediatric Hematology/Oncology, and the Global Action Network for Sickle Cell and Other Inherited Blood Disorders. Dr. Fasipe has consulted as a sickle cell disease educator for several pharmaceutical and therapeutic companies, including Forma Therapeutics, Novartis, Global Blood Therapeutics, Bluebird Bio, and Emmaus Medical. Dr. Fasipe received her bachelor of science from the University of Texas at Arlington and graduated from the combined M.D.-Ph.D. program at the University of Texas Medical Branch. She then completed her pediatric residency at Cincinnati Children’s Hospital Medical Center and her pediatric hematology/oncology fellowship at Baylor College of Medicine and Texas Children’s Hospital.
Faith Fletcher, Ph.D., M.A., is an associate professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine (BCM). She is also a senior advisor to the Hastings Center and a Hastings Center fellow. Her research program examines the social and structural barriers to scientific research and health care engagement facing traditionally marginalized populations and is grounded in methodological and theoretical approaches from the fields of public health, bioethics, and behavioral science. Her K01 Award funded through the National Human Genomic Research Institute uses a stakeholder engagement approach to develop ethical practices and guidelines for engaging residents of the deep South in genomics research. Dr. Fletcher was recently named to the Greenwall Faculty Scholars Program in Bioethics Class of 2026. In 2017, Dr. Fletcher was named one of the National Minority Quality Forum’s 40 under 40 Leaders in Health for her commitment to advancing health equity. She recently received the BCM Women of Excellence Award for her outstanding contributions and accomplishments in advancing health and health care equity as a field leader in alignment with the mission of the college. Dr. Fletcher received her B.S. in biology from Tuskegee
University with concentrations in bioethics and philosophy; her M.A. in bioethics, humanities, and society from Michigan State University; and her Ph.D. in health promotion, education and behavior from the University of South Carolina. Dr. Fletcher also completed a National Cancer Institute R25T-funded postdoctoral fellowship in the Department of Behavioral Science at the University of Texas MD Anderson Cancer Center.
Meghan Halley, Ph.D., M.P.H., is an assistant professor in the Center for Biomedical Ethics at Stanford University. A medical anthropologist by training, her research focuses on ethical and policy issues arising through the introduction of new genomic technologies for the diagnosis and treatment of rare diseases. Her current projects include examining ethical issues related to sustainability and the governance of patient data and relationships when large clinical genomic studies transition to new models of funding; ethnographic work exploring how diverse stakeholders perceive value in the use of genome sequencing for the diagnosis of rare diseases; and the development of new measures for assessing patient-centered outcomes in pediatric rare diseases. In 2021, she was awarded a career development grant from the National Human Genome Research Institute focused on the ethics and economics of genomic sequencing in rare disease. Dr. Halley received her doctorate in anthropology and her master of public health from Case Western Reserve University in Cleveland, Ohio. The parent of a child with a rare disease, she serves as President of the Board of Directors for the Undiagnosed Diseases Network Foundation, a nonprofit with the mission of improving access to diagnosis, research, and care for individuals with undiagnosed and ultra-rare diseases and has written on the parental experience navigating complex medical decisions.
Amanda Ingram, RN, is the Director of the Pediatric Case Management and Newborn Screening Follow-up Program for the Tennessee Department of Health. Before becoming director, Mrs. Ingram served as a Case Manager and the Case Management Coordinator for the program for 1 year each. Mrs. Ingram has been a registered nurse for 25 years and worked as a Neonatal Intensive Care Nurse for 13 years before coming to the Department of Health. As a neonatal nurse, Mrs. Ingram had experiences with receiving newborn screening results, requests for repeat testing, and collection of newborn screening specimens. She is a member of the Association of Public Health Laboratories (APHL) and serves on three APHL work-groups to collaborate with other programs to continue newborn screening awareness and improvement. She was selected to participate on the Krabbe Review Technical Expert Panel that informs the Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children. Mrs. Ingram has coauthored and contributed to multiple
articles in the newborn screening field and was a contributor to the recently updated Clinical and Laboratory Standards Institute Guidelines for Newborn Screening Follow-up and Education.
José A. Pagán, Ph.D. (NAM), is professor and chair of the Department of Public Health Policy and Management at the School of Global Public Health, New York University. He is also Chair of the Board of Directors of NYC Health + Hospitals, the largest municipal health care system in the United States. He formerly served as Chair of the National Advisory Committee of the Robert Wood Johnson Foundation’s Health Policy Research Scholars and was a member of the Board of Directors of the Interdisciplinary Association for Population Health Science and the American Society of Health Economists. He is a member of the National Academy of Medicine. He has led research, implementation, and evaluation projects on the redesign of health care delivery and payment systems. His areas of focus include population health management, health care payment and delivery system reform, and the social determinants of health. Dr. Pagán received his Ph.D. in economics from the University of New Mexico.
Jochen Profit, M.D., M.P.H., is the Wendy J. Tomlin-Hess Endowed Professor of Pediatrics at Stanford University and Co-Principal Investigator and Co-Chair of the California Perinatal Quality Care Collaborative and California Maternal Quality Care Collaborative. Dr. Profit’s research focuses on optimizing the quality of neonatal–perinatal health care delivery, with an emphasis on enhancing organizational effectiveness. He is also interested in the use of information technology to support families, care professionals, and policy makers in their efforts to provide optimal care to sick infants. For over a decade, his research has received continuous funding from the National Institutes of Health and other federal, foundation, and intramural sources. Dr. Profit has served on various national scientific and professional organizations, including for the National Institutes of Health. Recently, he served as a member of the National Academies of Sciences, Engineering, and Medicine consensus study committee on Research Issues in the Assessment of Birth Settings. He graduated from the University of Freiburg Medical School in Germany and completed his neonatology and health services research training at Harvard.
Scott M. Shone, Ph.D., HCLD (ABB), is the Director of the North Carolina State Laboratory of Public Health. He received his doctorate in molecular microbiology and immunology from the Johns Hopkins Bloomberg School of Public Health and is a board-certified high-complexity clinical laboratory director. Dr. Shone spent 9 years managing the New Jersey Newborn
Screening (NBS) Laboratory. As a senior research public health analyst at RTI International, he focused on NBS pilot studies such as Early Check as the Clinical Laboratory Improvement Amendments Director. Currently, he leads a team of over 230 staff for the delivery of clinical and environmental laboratory testing, certification, and quality improvement services in North Carolina. Dr. Shone received the Jean Dussault Medal for Young Investigators from the International Society for Neonatal Screening and the Governor’s Award for Excellence from the State of North Carolina. Dr. Shone served as a voting member of the Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children from 2017 to 2022. Currently, he is the Association of State and Territorial Health Officials organizational representative to this federal advisory committee. He has consulted for the Association of Public Health Laboratories (APHL) to develop contingency plans for NBS programs during states of emergency. He is a member of the editorial board for the International Journal of Neonatal Screening, a member of the APHL NBS Committee, and President-elect for APHL.
Kayte Spector-Bagdady, J.D., M.Be., is a lawyer and bioethicist and associate professor of obstetrics and gynecology at the University of Michigan (U-M) Medical School. She also directs the bioethics program for the U-M Center for Bioethics and Social Sciences in Medicine, which won the 2022 American Society for Bioethics & Humanities Cornerstone Award. She is an Associate Editor of The American Journal of Bioethics and was the Chair of the American Heart Association’s Principles for Health Information Collecting, Sharing, and Use. She was an American Society of Law, Medicine & Ethics Health Law Scholar in 2019 and is a current Greenwall Faculty Scholar. Her work has been funded by the National Human Genome Research Institute, the National Center for Advancing Translational Sciences, and the Greenwall Foundation, and her research is on improving the governance of research with health data and specimens with a focus on public–private partnerships. Before joining U-M, she was an Associate Director for President Obama’s Presidential Commission for the Study of Bioethical Issues and is a former practicing drug and device attorney. She received her B.A. from Middlebury College, her J.D. and M.Be. from the University of Pennsylvania, and was an empirical bioethics postdoctoral fellow at U-M.
Beth A. Tarini, M.D., M.S., M.B.A., is the Associate Director of the Center for Translational Research at Children’s National Hospital. She previously served as the Division Director of General Pediatrics at the University of Iowa. She is a formally trained health services researcher (graduate of the Robert Wood Johnson Clinical Scholars Program) who conducts health services research that focuses on optimizing the delivery of genetic
services to children and their families, particularly through newborn screening. Her research has been funded by the National Institutes of Health, the Health Resources and Services Administration, the Robert Wood Johnson Foundation, and the Cystic Fibrosis Foundation. Dr. Tarini is a former president of the Society for Pediatric Research, a fellow of the American Academy of Pediatrics, and a member of the Genomics & Society Working Group of the National Human Genome Research Institute. She has been appointed to and led federal, national, and state committees that provide policy recommendations for genetics services and newborn screening, including the Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children. Dr. Tarini received her M.D. from Albert Einstein College of Medicine and her B.A. from Harvard University. She has an M.S. in health services from the University of Washington and an M.B.A. from George Washington University.
Krystal Tsosie (Diné/Navajo Nation), Ph.D., M.P.H., M.A., is an assistant professor at Arizona State University in the School of Life Sciences. She cofounded the first U.S. Indigenous-led biobank, a 501(c)(3) nonprofit research institution called the Native BioData Consortium. Dr. Tsosie’s research centers on ethical engagement with Indigenous communities in precision health and genomic medicine. Her areas include genetic epidemiology, bioethics, public health, and community research approaches. She previously patented a combined targeted ultrasound imaging and chemotherapeutic drug delivery device for treating early metastases in cancer. Dr. Tsosie is currently on the Board of Directors for the American Society of Human Genetics, and on the ethics committee of the American Society for Cell and Gene Therapies. Her background includes a master of arts in bioethics for studying genetic controversies in Indigenous communities, a master of public health in genetic epidemiology for studying gene variation related to hypertension and uterine fibroids, and a Ph.D. in genomics and health disparities. She recently served on the National Academies of Sciences, Engineering, and Medicine (the National Academies) consensus study committee, Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine and on the National Academies planning committee, Engaging Scientists in Central Asia on Data Governance Principles for Life Science Data. Dr. Tsosie accepted a one-time speaker honorarium from Regeneron for serving as a guest speaker at the DRIFT Symposium in 2022 to inform the company how to improve their interactions with Indigenous communities. In 2024, Dr. Tsosie served as a paid consultant and member of the Clinical Advisory Board for Cache DNA, a company that developed technology that encapsulates and stores nucleic acids without refrigeration to make DNA and RNA isolation more equitable.
STAFF MEMBERS
Katherine Bowman, Ph.D., is a senior program officer with the Board on Health Sciences Policy and staff officer for the ongoing study Newborn Screening: Current Landscape and Future Directions. Her activities often focus on the implications of developments in science and technology, including Toward Equitable Innovation in Health and Medicine: A Framework (2023), Heritable Human Genome Editing with colleagues at the Royal Society (2020), and a recent workshop on scientific, ethical, and regulatory implications of stem cell-derived human gametes. She also directs the Forum on Traumatic Brain Injury and served as director of the report Traumatic Brain Injury: A Roadmap for Accelerating Progress (2022). She received her Ph.D. in biomedical engineering from Johns Hopkins University.
Emily Packard Dawson, Ph.D., is a program officer with the Board on Health Sciences Policy and codirector of the study Newborn Screening: Current Landscape and Future Directions. She first joined the National Academies of Sciences, Engineering, and Medicine as a Mirzayan Science and Technology Policy Graduate Fellow. As a fellow, Dr. Packard Dawson supported a workshop on scientific, ethical, and governance implications of in vitro gametogenesis, and drafted the resulting proceedings. Prior to moving into science policy, her postdoctoral and graduate research interests revolved around the specification of the germ cell lineage for sperm and eggs. She earned a Ph.D. in cell and molecular biology from Baylor College of Medicine.
Sarah H. Beachy, Ph.D., PMP, is a senior program officer with the National Academies of Sciences, Engineering, and Medicine. In this capacity, Dr. Beachy serves as director of the Roundtable on Genomics and Precision Health and the Forum on Regenerative Medicine, in addition to leading other projects. In these roles, she has facilitated impactful activities on topics such as Population Descriptors in Genetics/Genomics Research, Improving Diversity of the Genomics Workforce, Changing the Culture of Data Sharing and Management, and An Examination of Emerging Bioethical Issues in Biomedical Research, among others. In 2022, Dr. Beachy was awarded a National Academy of Medicine Cecil Award for Individual Excellence for her contributions to the National Academies. Prior to her time at the National Academies, Dr. Beachy completed an AAAS Science and Technology Policy Fellowship in diplomacy at the U.S. Department of State, working closely with the Office of the Science and Technology Adviser to the Secretary. She was selected as a Mirzayan Science and Technology Policy Fellow at the National Academies in 2011. Prior to moving into science policy, Dr. Beachy was a postdoctoral fellow in the Genetics
Branch at the National Cancer Institute, where she generated and characterized transgenic mouse models of leukemia and lymphoma. She earned her Ph.D. in biophysics from the Roswell Park Cancer Institute Graduate Division at the University at Buffalo.
Emily Backes, J.D., M.A., is deputy board director for the Board on Children, Youth, and Families (BCYF) and the Committee on Law and Justice (CLAJ) in the Division of Behavioral, Social Sciences, and Education at the National Academies of Sciences, Engineering, and Medicine (the National Academies). In her time at the National Academies, she has served as study director for the reports The Promise of Adolescence: Realizing Opportunity for All Youth; Birth Settings in America: Outcomes, Quality, Access, and Choice; Transforming the Financing of Early Care and Education; and Decarcerating Correctional Facilities during COVID-19: Advancing Health, Equity, and Safety. Emily has also provided analytical and editorial assistance to National Academies projects on child poverty, transforming the pediatric health care system, breastfeeding, child and youth mental and behavioral health, out-of-school time settings for children and youth, science literacy, and science communication. She received an M.A. and B.A. in history from the University of Missouri, specializing in U.S. human rights policy and international law, and a J.D. from the University of the District of Columbia, where she represented clients as a student attorney with the Low-income Taxpayer Clinic and the Juvenile and Special Education Law Clinic.
Michael Berrios, M.A., B.A., is a research associate in the Board on Health Sciences Policy at the National Academies of Sciences, Engineering, and Medicine (the National Academies). In his time at the National Academies, he has worked on projects in several subject areas, from vaccine clinical trials during the 2014–2015 Ebola epidemic in West Africa to medication-assisted therapy for opioid use disorder. He received an M.A. in Asian studies from the George Washington University.
Emily McDowell, M.P.H., is a research associate with the Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine. Most recently, she assisted with a consensus study, Advancing Clinical Research in Pregnant and Lactating Populations Overcoming Real and Perceived Liability Risks, and she has contributed to other projects at the National Academies relating to health equity and policy. She is a M.P.H. graduate from George Washington University concentrating her studies on epidemiology and environmental health. Before joining the National Academies, Ms. McDowell worked for a nonprofit emergency
management organization, Healthcare Ready, and assisted with the reauthorization of the Pandemic and All-Hazards Advancing Innovation Act. Her studies at George Washington University concluded with the presentation of her thesis entitled “Microplastics and Human Health: An Inescapable Exposure.” Ms. McDowell received her B.S. in community health, concentrating in global health at George Mason University.
Gayatri Somaiya, B.A., is a senior program assistant in the Board on Health Sciences Policy at the National Academies of Sciences, Engineering, and Medicine. They are interested in the societal and legal implications of cognitive psychology research, specifically research in attention and memory. They work on a number of different projects including the study Newborn Screening: Current Landscape and Future Directions and the Forum on Traumatic Brain Injury. Previously, they worked as a paralegal at Healthcare Legal Solutions L.L.C. They graduated from Cornell University, earning their bachelor of arts in biology, concentrating in neuroscience, and political science.
Clare Stroud, Ph.D., is senior board director for the Board on Health Sciences Policy at the National Academies of Sciences, Engineering, and Medicine. In this capacity, she oversees a program of activities aimed at fostering the basic biomedical and clinical research enterprises; addressing the ethical, legal, and social contexts of scientific and technologic advances related to health; and strengthening the preparedness, resilience, and sustainability of communities. Previously, she served as director of the National Academies’ Forum on Neuroscience and Nervous System Disorders, which brings together leaders from government, academia, industry, and nonprofit organizations to discuss key challenges and emerging issues in neuroscience research, development of therapies for nervous system disorders, and related ethical and societal issues. She also led consensus studies and contributed to projects on topics such as pain management, medications for opioid use disorder, traumatic brain injury, preventing cognitive decline and dementia, supporting persons living with dementia and their caregivers, the health and well-being of young adults, and disaster preparedness and response. Dr. Stroud first joined the National Academies as a Mirzayan Science and Technology Policy Graduate Fellow. She has also been an associate at AmericaSpeaks, a nonprofit organization that engaged citizens in decision making on important public policy issues. Dr. Stroud received her Ph.D. from the University of Maryland, College Park, with research focused on the cognitive neuroscience of language, and her bachelor’s degree from Queen’s University in Canada.
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