ELSI Personal Genomics Seminar Series

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Ms. Janice Bach

Biography

Janice Bach is the State Genetics Coordinator and Manager of the Genomics and Genetic Disorders Section at the Michigan Department of Community Health. Programs in the Section encompass population-based genomics issues throughout the life span including birth defects prevention, newborn screening follow-up, and the integration of genomics into chronic disease programs. Ms. Bach holds a bachelor’s degree from Oberlin College and a Master’s degree in Human Genetics from the University of Michigan. Before assuming her full-time role in public health administration, she worked for more than 15 years as a genetic counselor in pediatric settings. Her current work includes expanding public education about newborn screening and coordinating efforts to establish the Michigan BioTrust for Health.

Selected Websites

1. Michigan BioTrust for Health
2. Michigan Neonatal Biobank

Dr. Aaron Goldenberg

Biography

Aaron Goldenberg, PhD MPH is an Assistant Professor in the Department of Bioethics at Case Western Reserve University (CWRU). He is also Assistant Director of the Center for Genetic Research Ethics and Law at CWRU. His work focuses on the ethical and social issues surrounding advances in public health genomics, biobanking, genetics and health disparities, and the intersection between bioethics and public health ethics. Dr. Goldenberg received hi PhD in Bioethics from Case Western. His dissertation focused on the ethical issues surrounding the use of Michigan's residual newborn screening bloodspots for research purposes. His project also included a review of state newborn screening policies and educational materials. Dr. Goldenberg has a MA in bioethics from Case Western and an MPH in Health Education and Public Health Genetics from the University of Michigan. Before beginning his PhD program, he was the Center Manager for the University of Michigan ’s Center for Genomics and Public Health.

Selected Publications

1. Goldenberg, A. J., Chandros Hull, S., Botkin, J. R., & Wilfond, B. S. (2009). Pediatric biobanks: Approaching informed consent for continuing research after children grow up. The Journal of Pediatrics. 155, 578-83.
2. Tarini, B. A., Goldenberg, A., Singer, D., Clark, S. J., Butchart, A., & Davis, M. M. (2009). Not without my permission: Parents' willingness to permit use of newborn screening samples for research. Public Health Genomics. DOI: 10.1159/000228724.

Professor Ed Goldman

Biography

Edward Goldman is an Associate Professor in the University of Michigan Department of Obstetrics and Gynecology where he works on issues of reproductive justice. From 1978 to January 2009 he was the Health Systems Attorney, University of Michigan. March, 2004 he was appointed Associate Vice President and Deputy General Counsel for the University. He is also an Adjunct Professor at the University of Michigan School of Public Health where he teaches courses in health law and the legal and ethical aspects of research. Mr. Goldman enjoys a diverse career combining law, ethics, public policy, teaching, writing, and community service. Mr. Goldman has written on a number of topics in the health care field. His writing covers such important areas as refusing treatment, informed consent for breast cancer therapy, consenting to blood transfusion, Jehovah Witnesses, medico-legal issues in pulmonary medicine, the law of emergency care in neonatal emergencies, newborn screening and privacy issues. He has also published in the areas of genetics, wrongful birth, fetal versus maternal rights, medical education, and non-custodial parents' rights in their children's health care. Mr. Goldman is President of the Michigan BioTrust for Health Board of Directors.

Selected Publications

1. Weadock, W. J., Londy, F. J., Ellis J. H., & Goldman, E. B. (2008). Do radiology and other health care presentations posted on the internet contain accessible protected health information? Radiology. 249(1), 285-93.
2. Morrel-Samuels, P., & Goldman, E. (2007). Who, what, and where: Guidelines for the statistical analysis of disparate impact in EEO litigation. ACC Docket. 25(3), 54-74.
3. Goldman, E. B. (2004). Newborn screening: Towards a uniform screening panel and system. HHS National Task Force. (Task Force Report).

Ms. Carrie Langbo

Biography

Carrie Langbo is the Community Engagement Facilitator for the Michigan BioTrust for Health initiative. She received a bachelor’s degree from Albion College and a Master’s degree in Genetic Counseling from Northwestern University. Ms. Langbo worked for 6 years as a genetic counselor in reproductive and oncology settings prior to joining the Michigan Department of Community Health in 2004. In addition to the Michigan BioTrust for Health, her current area of interest and work focuses on newborn screening for cystic fibrosis.

Selected Websites

1. Michigan BioTrust for Health
2. Michigan Neonatal Biobank

Dr. Ann Mongoven

Biography

Dr. Mongoven is an Assistant Professor of Philosophy at the Michigan State University Center for Ethics and Humanities in the Life Sciences. She excavates how symbolic frameworks influence, often without recognition, the parameters of bioethics and public health policy. She has topical interests in public health ethics, justice in health care, organ donation/transplantation, challenges of democratic deliberation on bioethical issues, and challenges of diversity in health care. Her current work considers virtues necessary for democratic deliberation, cross-cultural understandings of organ donation, biobanking, and symbolic framings of public health preparedness and response.

Selected Publications

1. Mongoven, A. (2009). Just Love: Transforming Civic Virtue. Bloomington: Indiana University Press.
2. Mongoven, A. (2003). Duties to stakeholders amidst pressure from shareholders: Lessons from an advisory panel on transplant issues. Bioethics. 17(4), 319-40.

Dr. Jim Resau

Biography

Dr. Resau received his Ph.D. from the University of Maryland School of Medicine in 1985. He has been involved in clinical and basic science imaging and pathology-related research since 1972. Dr. Resau was the Director of the Analytical, Cellular and Molecular Microscopy Laboratory in the Advanced BioScience Laboratories–Basic Research Program at the National Cancer Institute–Frederick Cancer Research and Development Center, Maryland, from 1992 to 1999. He joined Van Andel Research Institute as a Special Program Senior Scientific Investigator in June 1999 and in 2003 was promoted to Deputy Director. In 2004, Dr. Resau assumed as well the direction of the Laboratory of Microarray Technology to consolidate the imaging and quantification of clinical samples in a CLIA-type research laboratory program. In 2005, Dr. Resau was made the Division Director of the quantitative laboratories (computational biology, epidemiology, microarray, pathology-histology, and proteomics).

Selected Publications

1. Haak, P. T., Busik, J. V., Kort, E. J., Tikhonenko, M. -., Paneth, N., & Resau, J. H. (2008). Archived unfrozen neonatal blood spots are amenable to quantitative gene expression analysis. Neonatology. 95(3), 210–216. PMID: 18799893
2. Kort E. J., Norton, P., Haak, P., Berghuis, B., Ramirez, S., & Resau, J. (2009). Gene expression profiling in veterinary and human medicine: Overview of applications and proposed quality control practices. Veterinary Pathology. 46(4), 598-603. PMID: 19276055

Dr. Beth Tarini

Biography

Beth A. Tarini, M.D., M.S. is an Assistant Professor in the Division of General Pediatrics at the University of Michigan Health System. Her research focuses on optimizing the use of diagnostic testing and technology, including genetic testing, in pediatrics. She is particularly interested in population-based screening programs, such as newborn screening. Other research interests include parental involvement in medical decision-making and communication about testing between health care providers and parents. Dr. Tarini completed her undergraduate degree in biology at Harvard University and her medical degree at Albert Einstein College of Medicine. She moved to Seattle for her pediatric residency training at the University of Washington and stayed on there as a fellow in the Robert Wood Johnson Clinical Scholars Program. She also received her MS degree in Health Services from the University of Washington School of Public Health.

Selected Publications

1. Tarini, B. A., Goldenberg, A., Singer, D., Clark, S. J., Butchart, A., & Davis, M. M. (2009). Not without my permission: Parents' willingness to permit use of newborn screening samples for research. Public Health Genomics. DOI: 10.1159/000228724.