| New York State Department of Health Genetic Susceptibility to Breast and Ovarian Cancer: Assessment, Counseling and Testing Guidelines |
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Members of the Steering Committee of this project provided oversight to the development, dissemination and evaluation of two clinical guidelines in medical genetics. The second guideline addressed issues in evaluation of the newborn with single or multiple congenital anomalies. Certain committee members were chosen for their expertise in birth defects surveillance, dysmorphology and related fields.
H. BIOSKETCHES
Avi Barbasch, MD (Guideline Development Team and Steering Committee; representing American Cancer Society) is Assistant Professor of Medicine (Oncology) at the Mt. Sinai School of Medicine and Attending Physician at the Mt. Sinai Hospital in New York City. Dr. Barbasch is a member of the Board of Trustees of the American Cancer Society-New York City Division and is chairman of its Program Committee. Dr. Barbasch is also a member of the Steering Committee of the Breast Cancer Guideline Development Committee of the Mt. Sinai Department of Health Policy. In addition to his large clinical practice, he is involved in clinical trials in the treatment of breast cancer.
Hope Charkins, MSW (Steering Committee; representing Alliance of Genetic Support Groups) holds a master's degree in social work from San Diego State University. She works as a medical social worker for the Vermont Department of Health, Children with Special Health Needs program. Along with her husband, she founded the Treacher Collins Foundation, and now serves as its executive director. She has two children, one of whom has Treacher Collins syndrome. Ms. Charkins is the author of Children with Facial Difference: a Parent's Guide, published by Woodbine House.
Kathleen R. Ciccone, MBA, RN (Dissemination Team - representing Healthcare Association of New York State) As Vice President for Quality and Research Initiatives at the Healthcare Association of NYS, Ms. Ciccone is involved in all HANYS quality improvement, clinical guideline, credentialing and managed care initiatives. She acts as liaison on quality activities with the Joint Commission on Accreditation of Healthcare Organizations, NYS Department of Health, and with clinical specialty and nursing societies. She has a lead role in two research projects: one on "A Model to Adapt Nationally Developed Clinical Guidelines for Local Implementation and to Evaluate the Effect on Health Outcomes (Pain Management)" with the NYS Society of Anesthesiologists, and a second on "Breast Cancer Treatment: Systems of Care." At the NYS Department of Health, she has acted as a technical advisor to the NYS Task Force on Clinical Guidelines and Medical Technology Assessment and was a member of the Breast Cancer Treatment Quality Advisory Panel.
Cynthia Curry, MD, FACMG (Steering Committee; representing American College of Medical Genetics - Committee on Professional Practice and Guidelines) is Director of Genetics Medicine at Valley Children's Hospital in Fresno, California. She is a Professor of Pediatrics at the University of California, San Francisco. She received her Bachelor's Degree from Mt. Holyoke College and her MD from Yale University. Dr. Curry has developed Guidelines for Genetic Consultation through the Pacific Southwest Regional Genetics Network in California and has completed a "Consensus Paper on Mental Retardation" under the auspices of the Dysmorphology Subcommittee of the Clinical Practice Committee, American College of Medical Genetics, which she chairs. Research interests include pregnancy loss, new genetic syndromes and etiologies of cerebral palsy.
Jessica G. Davis, MD, FACMG (Steering Committee; representing American College of Physicians - NYS Chapter and American Public Health Association - NYS Affiliate) is the Co-Director of the Division of Human Genetics at the New York Hospital - Cornell University Medical College. Certified by the American Board of Medical Genetics in Clinical Genetics, she is an Associate Professor of Pediatrics at Cornell University Medical College. Dr. Davis is a clinical geneticist who has an active interest in genetics and public health and in genetics education for primary care providers. She is a past president of the NYS Genetics Task Force, GENES (The Genetics Network of NYS, Puerto Rico and the Virgin Islands), and CORN (The Council of Regional Networks for Genetic Services). Her clinical research interests focus on Marfan Syndrome and other connective tissue disorders.
Franklin Desposito, MD, FACMG (Steering Committee; representing Council of Regional Networks for Genetic Services) has been Interim Chairman of the Department of Pediatrics at the University of Medicine and Dentistry of New Jersey (UMDNJ) - New Jersey Medical School since 1990. He is also Director of Clinical Genetics at the Center for Human & Molecular Genetics at UMDNJ-New Jersey Medical School. He is board certified in clinical genetics, clinical cytogenetics and molecular genetics. Dr. Desposito holds the following positions on national committees. He is President of the Mid-Atlantic Regional Human Genetics Network (MARHGN), one of the federally funded regional genetics networks, and sits on the Steering Committee of the Council of Regional Networks for Genetics Services (CORN). Dr. Desposito has served as Chairman of the Committee on Genetics of the American Academy of Pediatrics since 1995. This committee has developed and published numerous health supervision statements for children with various genetic disorders. He brings this expertise to the guidelines project.
Charlotte Druschel, MD, MPH (Evaluation Team) - Dr. Druschel is a reproductive and perinatal epidemiologist. She received her MD from the University of Minnesota and her MPH in Epidemiology from Johns Hopkins. She has conducted extensive analyses of neonatal and postneonatal mortality in Georgia and Alabama using vital records and programmatic data. While at the Centers for Disease Control she developed a protocol for a population-based study of very low birthweight babies. While on the faculty of the School of Public Health at the University of Alabama-Birmingham, she developed courses for a new Maternal and Child Health training program. She is currently the Medical Director of the New York State Congenital Malformations Registry (CMR) where she reviews and revises coding procedures, reviews medical records and investigates potential clusters of adverse pregnancy outcomes. She oversees the state surveillance for time-space clusters and the CMR annual cohort report. She has published descriptive studies of specific malformations and has served as Co-PI of a case-control study of heart malformations. She is the PI on three major projects: neural tube defect surveillance in the Lower Hudson Valley, the Center of Excellence for Birth Defects Prevention Research, and Fetal Alcohol syndrome surveillance in Western New York. All of these are cooperative agreements with CDC.
Stephen B. Edge, MD, FACS (Guideline Development Team and Steering Committee; representing American College of Surgeons) is Chief of the Breast Cancer Program, Division of Surgical Oncology at Roswell Park Cancer Institute (RPCI), and Associate Professor of Surgery at SUNY at Buffalo. Dr. Edge maintains an active breast cancer practice, and serves as director of the breast cancer research development program at Roswell Park. He is particularly interested in breast cancer risk prediction and its clinical applications. In conjunction with Carolyn Farrell who also serves on this project's Steering Committee, he is Co-Director of the Breast Cancer Risk Evaluation Program at RPCI which provides risk assessment and counseling, and offers genetic testing in appropriate circumstances for breast and ovarian cancer susceptibility genes.
Carolyn D. Farrell, MS, CNP, CGC (Guideline Development Team and Steering Committee; representing International Society of Nurses in Genetics) is Director of Clinical Genetic Services at Roswell Park Cancer Institute (RPCI). She is a Diplomate of the American Board of Medical Genetics, a Board Certified Genetic Counselor, a Board Certified Nurse Practitioner, and has had 15 years of experience in genetics. She is an active member of several professional genetics societies and oncology organizations, including the American Society of Human Genetics, American College of Medical Genetics, National Society of Genetic Counselors, International Society of Nurses in Genetics (President), Oncology Nursing Society, and others. Ms. Farrell has lectured extensively and has published on various genetics topics, and the related ethical, legal, social and professional issues. She is co-director and developer of a comprehensive program for evaluation, education and testing for persons with an individual or family history of breast or ovarian cancer. She has received a National Cancer Institute Supplemental Grant for Education and Training in Cancer and Genetics; this is focused on three target groups - physicians, allied health care professionals, and the lay public.
Beth A. Fine, MS, CGC (Guideline Development Team and Steering Committee; represented American College of Medical Genetics - Committee on Professional Practice and Guidelines) was an Assistant Professor of Obstetrics and Gynecology and Coordinator of the Graduate Program in Genetic Counseling at Northwestern University Medical School in Chicago. Over the past 18 years, she practiced genetic counseling in pediatric, prenatal and cancer genetics clinics. Ms. Fine was a past president of the National Society of Genetic Counselors and was Vice President of the American Board of Genetic Counseling. She served as a member of the Executive Committee of the Ethical, Legal, and Social Implications of the Human Genome Project (ELSI) Working Group, as an advisory panel member for the Office of Technology Assessment's study, "Cystic Fibrosis and DNA Tests: Implications for Carrier Screening," and as a member of the Expert Panel for the NIH Technology Conference on Gaucher Disease: Current Issues in Diagnosis and Treatment. These activities and her work in establishing a Breast Cancer Risk Assessment and Genetic Counseling Program at the Lynn Sage Breast Cancer Center at Northwestern Memorial Hospital informed her significant contributions to the development of these practice guidelines.
Alan R. Fleischman, MD (Steering Committee and Evaluation Team; representing NYS Task Force on Life and the Law) is Senior Vice President of the New York Academy of Medicine and Clinical Professor of Pediatrics and Clinical Professor of Epidemiology and Social Medicine at the Albert Einstein College of Medicine in New York City. He graduated from the City College of New York and from the Albert Einstein College of Medicine. He continued his education in Pediatrics and Neonatology at the Johns Hopkins Hospital and at the National Institutes of Health. Dr. Fleischman joined the faculty at the Albert Einstein College of Medicine and the Montefiore Medical Center in 1975, where he became Director of the Division of Neonatology and Professor of Pediatrics and Professor of Epidemiology and Social Medicine. In 1994, he became Senior Vice President of the New York Academy of Medicine where he is responsible for initiatives in urban health, education, public policy, ethics and public health. He has published over 100 articles and book chapters in the areas of perinatal medicine and bioethics.
Lizbeth M. Fonseca, MS (Project Coordinator) is Coordinator of the Clinical Guidelines Project for the American College of Medical Genetics. The College has developed two sets of clinical practice guidelines for healthcare providers. The first guideline concerns breast/ovarian cancer genetic screening, counseling and testing; the second focuses on diagnosis, management and genetic counseling for families of newborns with single or multiple congenital anomalies. Ms. Fonseca is Health Program Administrator for the NYS Department of Health's Genetic Services Program in the Wadsworth Center. She joined the program after receiving her degree in Health Policy and Management from the State University of New York's School of Public Health. She serves on the Advisory Board of the Upstate Cancer Genetics Screening Initiative (Jenilu Project) based at the Saratoga Institute. She is particularly interested in social, ethical and legal issues relating to health care and in the implications of bio-technologies involving genetics.
Paul Gitman, MD, FACP (Evaluation Team and Steering Committee; representing American Society of Internal Medicine) is a practicing General Internist and Vice President of Clinical Care and Resource Management at Long Island Jewish Medical Center. He is board certified in Internal Medicine and is an Assistant Professor of Medicine at Albert Einstein College of Medicine. Active in numerous medical organizations, Dr. Gitman is immediate past president of the NYS Society of Internal Medicine. He is Chair of the Health and Public Policy Committee and a member of the Governing Council of the NYS Chapter of the American College of Physicians. He is Chair of the Island Peer Review Organization's Criteria Norms and Standards Committee and is a member of the Steering Committee of their Health Care Quality Improvement Program. Dr. Gitman is the elected Chair of the NYS Carrier's Advisory Committee and is Chair of the Organized Medical Staff Section of the Medical Society of the State of New York. Dr. Gitman has also served as a delegate and chairman of the NYS Delegation to the AMA's Organized Medical Staff Section where he was responsible for the submission of numerous resolutions to the AMA. Dr. Gitman was appointed by the Governor to serve on a panel to review the NYS Physician Discipline Process and in June of 1997 was appointed to the NYS Board of Medicine.
Rosalie B. Goldberg, MS, CGC (Steering Committee; representing the National Society of Genetic Counselors) is the Genetic Counselor for the Family Core of the Human Genetics Program at the Albert Einstein College of Medicine (AECOM), Bronx, New York, and Acting Director of the Velo-Cardio-Facial Institute at Montefiore Medical Center. She is a Senior Associate on the faculties of Plastic Surgery, Pediatrics and Molecular Genetics at the AECOM and is the coordinator of molecular genetic studies as correlated with clinical findings in congenital craniofacial disorders, especially velo-cardio-facial syndrome (22q11 deletion syndrome). She has co-authored numerous peer-reviewed articles on the genetic, physical and psychosocial impact of craniofacial disorders and has a number of disorders that are named after her. Ms. Goldberg serves as the National Society of Genetic Counselors (NSGC) liaison to the National Human Genome Research Institute (NHGRI) Advisory Council. She has been active in the NSGC since it was incorporated in 1979 and in 1994 received an NSGC Regional Leadership Award.
Thomas L. Goodman, MD, FACP (Guideline Development Team; representing Upstate NY Society of Medical Oncology/Hematology) is Chief, Section of Oncology, Department of Medicine, St. Clare's Hospital, Clinical Professor of Medicine, Department of Hematology and Oncology at Albany Medical College, and Clinical Director, Bellevue Supportive Oncology Chemotherapy Center for Women at Bellevue Hospital in Schenectady. Dr. Goodman serves on the Board of Directors for the Upstate New York Society of Medical Oncology and Hematology, and on the Advisory Board of "The Jenilu Project," a cancer genetic screening project in Upstate New York. Dr. Goodman has a special interest in the oncologic aspect of women's health and is a member of a number of national groups which conduct cancer clinical trials. He also has a major interest and a strong participation in cancer screening and quality improvement programs.
Karen Greendale, MA, CGC (Co-Principal Investigator) is Genetic Services Program Administrator in the Wadsworth Center, NYS Department of Health and is co-coordinator of the Genetics Network of NYS, Puerto Rico and the Virgin Islands. Ms. Greendale is a genetic counselor certified by the American College of Medical Genetics in 1982 and by the American Board of Genetic Counseling in 1993. She is a past president of the National Society of Genetic Counselors and chaired the Council of Medical Genetics Organizations in 1994. She is a member of the American College of Medical Genetics Committee on Professional Practice and Guidelines and acts as liaison to the College from the National Society of Genetic Counselors. Her research interests are in quality improvement in genetic counseling and genetic service delivery, genetics health workforce issues, international provision of genetic services, and cancer genetics.
Kurt Hirschhorn, MD, FACMG (Steering Committee; representing American College of Medical Genetics Foundation) received his BA in 1950 from New York University and his MD degree in 1954 from New York University School of Medicine. After a residency in internal medicine and fellowship at Bellevue Hospital in New York City, he completed a Fellowship in Human Genetics in Uppsala, Sweden. He became Assistant Professor and then Associate Professor of Medicine at New York University School of Medicine. He became Professor of Pediatrics at Mount Sinai School of Medicine in 1966 where he established a new Medical Genetics Program. From 1968 to 1976 he was the Arthur J. and Nellie Z. Cohen Professor of Genetics at Mount Sinai School of Medicine. In 1977, he became the Herbert H. Lehman Professor and Chairman of the Department of Pediatrics at Mount Sinai School of Medicine and Pediatrician-in-Chief at Mount Sinai Hospital. He is now Professor of Pediatrics, Human Genetics and Medicine at Mount Sinai School of Medicine. He has worked in cytogenetics, biochemical genetics, immunogenetics and molecular genetics, publishing over 300 papers and reviews. In the early 1960s, he discovered the mixed lymphocyte reaction which was one of the major beginnings of the field of cellular immunology and immunogenetics. He made fundamental contributions in the area of inborn errors of metabolism, including several lysosomal enzyme defects and Menkes syndrome. Dr. Hirschhorn is a member of many societies, including the American Society of Human Genetics (President, 1969), Harvey Society (President, 1980), American Society for Clinical Investigation, Association of American Physicians, American Pediatric Society, American Academy of Pediatrics (Fellow), American College of Medical Genetics (Honorary and Founding Fellow), the American Association for the Advancement of Science (AAAS), and the Institute of Medicine of the National Academy of Sciences (Senior Member). He is one of the founding members of The Hastings Center for Biomedical Ethics. He received the William Allan Award of the American Society of Human Genetics in 1995. He has served or is currently serving on many Editorial Boards. He has served as a Consultant or Member of the Advisory Board of the NIH, National Foundation-March of Dimes Basic Sciences Research Committee (Chairman), National Tay-Sachs Association, Dysautonomia Foundation (Chairman), American Board of Medical Genetics (Founding Member) and American Cancer Society (Council).
Michael M. Kaback, MD, FACMG (Principal Investigator) is a Professor in the Departments of Pediatrics and Reproductive Medicine, and Chief, Division of Medical Genetics, Department of Pediatrics, University of California, San Diego (UCSD). He is the Director of the State of California Tay-Sachs Disease Prevention Program and of the International Tay-Sachs Disease Testing, Quality Control, and Data Collection Program. He received a BA from Haverford College and an MD from the University of Pennsylvania. After training and fellowships (Johns Hopkins and National Institutes of Health) he has held faculty positions at Hopkins, University of California at Los Angeles and UCSD. From 1986-1992, he served as Chair, Department of Pediatrics, UCSD, and Pediatrician-in-Chief, Children's Hospital & Health Center, San Diego. Dr. Kaback is a Founding Board Member of the American College of Medical Genetics and chairs its Committee on Professional Practice and Guidelines. He has served as Vice President of the Society for Pediatric Research, President of the Western Society for Pediatric Research and President of the American Society of Human Genetics, and is currently President-elect of the American Pediatric Society. Dr. Kaback is a member of the Institute of Medicine, National Academy of Sciences, and a Fellow of the American Association for the Advancement of Science. He is a recipient of the 1993 William Allan Award, from the American Society of Human Genetics, for outstanding contributions to human genetics. Dr. Kaback is the North American Editor for Prenatal Diagnosis and Associate Editor for Advances in Pediatrics. He has authored or co-authored eight books and more than 200 publications in the biomedical literature. Dr. Kaback's major research interests include genotype-phenotype correlations in the lysosomal storage disorders, applications of genetic technologies to the control of human genetic disease, and psychosocial issues in population-based genetic screening.
Elly Kirschner, MA (Evaluation Team and Steering Committee; representing National Alliance of Breast Cancer Organizations) is Manager of Information Services for the National Alliance of Breast Cancer Organizations (NABCO), the leading non-profit central information resource on breast cancer and a network of over 375 breast cancer organizations. Ms. Kirschner manages a trained staff who provide breast cancer information to patients and their families, health professionals, and the media. Ms. Kirschner oversees NABCO's Web site, develops educational materials, manages educational programs and projects, and represents NABCO and its interests at meetings and on committees, including at the American Society of Clinical Oncologists Train-the-Trainer Workshop on Cancer Genetics Education as a panel member representing the consumer perspective on genetic testing. Ms. Kirschner has been involved in the public health field for eight years. Most recently, she has been working on her Doctor of Science degree at the Harvard School of Public Health. Prior to her studies, Ms. Kirschner was Curriculum Coordinator for the Know Your Body comprehensive school health program at the American Health Foundation.
Dale Halsey Lea, RN, MPH, CGC (Evaluation Team; representing the International Society of Nurses in Genetics) has been a practicing nurse for twenty years, and a Board-certified genetic counselor for the past ten years at the Foundation for Blood Research. She is the Senior Genetic Counselor and Supervisor of the Clinical Genetics Division, Southern Maine Regional Genetics Service. Ms. Lea holds a baccalaureate degree in nursing from Westbrook College, Portland, Maine and a Masters in Public Health from Loma Linda University, Loma Linda, California, with a focus on health education and health promotion. Primary areas of genetic counseling and nursing practice include pediatric and general genetics, prenatal and specialty clinics (hemophilia and cleft lip/palate). Areas of interest include quality improvement in genetic counseling services, and promotion of education in genetics for all nurses. Ms. Lea has published widely in the nursing literature on genetics topics for nurses, and is the first author of the book Genetics and Nursing: New Directions for Clinical Practice, published by Jones and Bartlett. Ms. Lea is a past president of the International Society of Nurses in Genetics, Inc. (ISONG), and has served as chair of the following ISONG committees: Bylaws, Education, and Ethics and Social Policy. She was Chair of the 1997 Annual ISONG Education Program. A major interest and focus of Ms. Lea's career has been the support of collaboration with primary health care professionals to provide quality genetics services to patients and families with genetic concerns.
Lauren Lynch, MD, FACMG (Steering Committee; representing American College of Obstetricians and Gynecologists) is an obstetrician with subspecialties in Maternal Fetal Medicine and Clinical Genetics. Dr. Lynch is certified in Obstetrics and Gynecology and Maternal Fetal Medicine by the American Board of Obstetrics and Gynecology. She is also certified in Clinical Genetics by the American Board of Medical Genetics. Dr. Lynch has a special interest in fetal diagnosis and therapy and most of her research experience is in these areas.
David Mastrianni, MD (Dissemination Team - representing Upstate NY Society of Medical Oncology/Hematology) - is head of the Section of Medical Oncology at Albany Medical College in Albany, New York. Dr. Mastrianni graduated from Albany Medical College and completed residency training at George Washington University Hospital in Washington, DC. He was a fellow in Hematology and Oncology at Beth Israel Hospital and at Harvard Medical School and served on the faculty there until 1991. His research interests include involvement in a variety of clinical trials and he is co-chair of the Jenilu project, a community-based cancer genetics research program.
Mary Louise F. Merola, MD (Steering Committee; representing American Academy of Family Physicians) is a board certified family physician who has been active in the NYS Academy of Medicine since her residency. She has served on various committees to assist in patient education in the areas of domestic violence, breast cancer and health maintenance. She is in private practice and volunteers her time at a community hospital-based residency program. She was requested by the state and national academy to represent primary care physicians on the committee. She has served on the New Physicians Committee of the American Academy of Family Physicians, has chaired the Education Committee of the NYS Academy of Family Physicians, and is presently on the Board of Directors of the NYS Academy of Family Physicians.
Kenneth Offit, MD, MPH, FACMG (Guideline Development Team and Steering Committee) is Chief of the Clinical Genetics Service in the Department of Human Genetics at Memorial Sloan-Kettering Cancer Center. He was Chair of the subcommittee on Cancer Genetic Testing of the American Society of Clinical Oncology and headed an advisory panel to the National Cancer Institute Director that outlined potential directions for a National Cancer Genetics Network. Dr. Offit's team identified the most frequent breast cancer susceptibility mutation occurring in individuals of Ashkenazi Jewish background. His current research focuses on other founder mutations in cancer susceptibility syndromes, and on the psychological, ethical, and policy implications of cancer genetic predisposition testing. He has been interested in the interplay between genetic and environmental causes of cancer, and has developed a clinical program to counsel individuals at hereditary risk for cancer. The goal of these efforts is to prevent cancers with an inherited susceptibility or to detect them at the earliest, most curable stage. Since its inception, the Clinical Genetics Service has screened the family histories of over 6,000 individuals with cancer, and it has helped more than 1,000 families identify a familial risk for cancer. Research programs focus on genotype-phenotype correlations of breast/ovarian cancer susceptibility genes, and the impact of counseling. There is a special research focus on founder mutations of BRCA and HNPCC genes, and on familial lymphoma.
Stirling M. Puck, MD, FACMG (Dissemination Team and Steering Committee - representing Biotechnology Industry Organization) received her BA from Harvard University in 1969 and her MD from Yale University in 1975. She remained at Yale to complete her pediatric training in 1978 and her fellowship in Human Genetics in 1980. She is certified by the American Board of Pediatrics and by the American Board of Medical Genetics in Clinical Genetics and Clinical Cytogenetics. She is a member of the American Society of Human Genetics and is a founding fellow of the American College of Medical Genetics. Since 1980 she has lived in Santa Fe, New Mexico, where she is a genetics consultant to the State Health Department and a member of the State Committee on Newborn Screening. She pioneered the private practice of genetics in both the clinical and laboratory setting. She became Medical Director of Vivigen, Inc., in 1982 and continues in that position today for Genzyme Genetics. Working through the Mountain States Regional Genetics Services Network, Dr. Puck has been instrumental in establishing maternal serum screening for open neural tube defects and Down syndrome as standard of care. As Medical Director of one of the largest genetics organizations in the world, she is responsible for maintaining the high quality and effective delivery of the clinical, cytogenetic, AFP screening and molecular diagnostic services the network provides. She also determines when new technologies are suitable for incorporation into Genzyme Genetics clinical or laboratory practice, and writes educational materials for patients, physicians and other health care professionals.
John D'A. Reinhard, MD (Evaluation Team and Steering Committee; representing The HMO Group) is responsible for the technology assessment program of the HMO Group. Dr. Reinhard is an Associate Clinical Professor in the Department of Medicine at the State University of New York at Buffalo School of Medicine. He is a Senior Physician Manager at Health Care Plan, a mixed model HMO in Buffalo, New York. His responsibilities include case management, technology assessment and medical support for benefit design and interpretation. He is also a practicing general Internist and Rheumatology consultant at Health Care Plan. He is also the Physician Manager for the technology assessment (TEMINEX) project of The HMO Group and a Section Editor of HMO Practice, the journal of the HMO Group. He has also become active at the national level in exploring how academic medical centers can work with managed care organizations to improve the processes and outcomes of care, utilizing the unique strengths and resources of each type of organization.
Noma Roberson, PhD (Dissemination Team) - Dr. Roberson received her BSN from D'Youville College in Buffalo and her MS and PhD from the State University of New York at Buffalo. She is Director of Community Intervention and Research in the Department of Cancer Control and Epidemiology at Roswell Park Cancer Institute in Buffalo, New York. She is a consultant for the National Cancer Institute and for the Office of Minority Health Resource Center, Public Health Service, US Department of Health and Human Services, and is a member of the New York State Department of Health Citizen Advisory Committee on Permanent Disposal Facilities and Disposal Method Selection (Governor's appointment). She is a contributor to the National Cancer Advisory Board, Information and Cancer Control Subcommittee. Dr. Roberson's research interests include community-based cancer control programs, focus group research and trends in cancer-related behaviors, incidence and mortality among special population groups.
Luther Robinson, MD (Steering Committee; representing the Organization of Teratology Information Services) - Luther K. Robinson, MD received the MD degree from the University of Cincinnati School of Medicine and completed a postdoctoral fellowship in Dysmorphology at the University of California, San Diego Medical Center. Dr. Robinson is certified by the American Board of Medical Genetics in Clinical Genetics. He is currently an Associate Professor in the Department of Pediatrics at the State University of New York at Buffalo School of Medicine and Biomedical Sciences and is Director of Clinical Genetics in the Division of Genetics at Children's Hospital of Buffalo. Dr. Robinson is also Medical Director of the Western New York Teratology Information Service and represents the Genetics Network of NYS, Puerto Rico and the Virgin Islands on the Council of Regional Genetics Networks Committee on Teratogen Information Services. Dr. Robinson's research interests include evaluations of infants with prenatal exposures to suspected teratogens, delineation of new malformation syndromes, and new approaches to prevention education.
Ruth Rosenblatt, MD, FACR (Guideline Development Team and Steering Committee; representing the American College of Radiology) is Director of Women's Imaging, Department of Radiology of New York Hospital/Cornell Medical Center. She has been a member of the American College of Radiology for over 20 years and a fellow since 1984. Dr. Rosenblatt received her medical degree from the Medical College of Pennsylvania and specialty training in radiology at Montefiore Medical Center where she was also on staff for over 20 years. Her major clinical interests have been in detection of breast cancer and gynecological disease using mammography and ultrasound respectively. She has written book chapters, published articles and lectured widely on ultrasound and mammography. Dr. Rosenblatt is past president of the New York Roentgen Society and immediate past president of the New York State Radiological Society, a chapter of the American College of Radiology.
Gladys Rosenthal, MS, CGC (Co-Chair, Guideline Development Team; representing National Society of Genetic Counselors) is a cancer genetic counselor. Ms. Rosenthal is board certified by the American Board of Medical Genetics. After working at the National Genetics Foundation and at Brooklyn Hospital, she joined the Strang Cancer Prevention Center where she started the first cancer genetics counseling program in the New York Metropolitan area. Her responsibilities include family history analysis, risk assessment and genetic counseling for individuals with family histories of cancer. When testing for BRCA 1/2 mutations became clinically feasible, Ms. Rosenthal set up a protocol for predictive testing and counseling. She is also involved in the operation of the National High Risk Registry, a database composed of 14,000 women with family histories of breast cancer, and with the Strang Breast Surveillance Program, which provides clinical and genetic services to women at increased risk for breast cancer. She has recruited and counseled women from both groups for participation in studies involving cancer susceptibility gene mutations.
Thomas C. Rosenthal, MD (Dissemination Team - representing American Academy of Family Physicians) is a Professor and Chairman of the Department of Family Medicine at the State University of New York at Buffalo and the Executive Director of the NY Rural Health Research Center. Dr. Rosenthal is a member of the American Academy of Family Physicians, the specialty society for Family Practice, serving a membership of over 80,000 practicing physicians. Family physicians play a key role in America's health care delivery system and the care of women and families. Family practice research includes disease management strategies, clinical guideline research, preventive medicine and population based health policy. Dr. Rosenthal has published over 30 scientific papers covering a range of research issues relating to primary care services and is an editor of a textbook on office-based diagnostic testing.
Peter T. Rowley, MD, (Co-Chair, Guideline Development Team) is Professor of Medicine, Pediatrics, Genetics, Microbiology-Immunology, and Oncology and Chair of the Division of Genetics at the University of Rochester School of Medicine. Dr. Rowley is certified by the American Board of Medical Genetics in Clinical Genetics. He provides genetic diagnostic and genetic counseling services. He directs the course in human genetics for medical students and the fellowship training program in medical genetics. He has conducted a series of investigations on the utilization and impact of genetic screening services, including neonatal and prenatal screening for hemoglobinopathies and prenatal carrier screening for cystic fibrosis. Recently he has conducted a regional trial of BRCA1/BRCA2 mutation screening in families affected with breast and/or ovarian cancer. He has done laboratory research in hematopoietic development and neoplasia, including the development of antisense agents for the treatment of leukemia, and more recently on genetic factors predisposing to malignancy. He directs a hemoglobinopathy reference laboratory. He is a member of the American Society of Human Genetics, has served as a member and chair of its Social Issues Committee and as a member of its Program Committee, and is a founding fellow of the American College of Medical Genetics.
Carolyn D. Runowicz, MD (Guideline Development Team) is Professor and Director of the Division of Gynecologic Oncology, Department of Obstetrics and Gynecology and Women's Health at the Albert Einstein College of Medicine and Montefiore Medical Center. She is recognized for her leadership position in the institution and in outside organizations, such as the American Cancer Society, Society of Gynecologic Oncologists, American College of Obstetricians and Gynecologists, and the National Surgical Adjuvant Breast and Bowel Project. She has more than 70 publications in the field of gynecologic oncology. In addition to a large clinical practice, she directs a fellowship training program in gynecologic oncology and conducts clinical research. She has numerous funded clinical research projects involving innovative new therapies in the treatment of women with ovarian, cervical and uterine malignancies. She is Principal Investigator on a National Institutes of Health funded community outreach grant to reduce the risks of cervical cancer in the inner city teenager population of the Bronx.
Lawrence R. Shapiro, MD, FACMG (Steering Committee; representing the American Academy of Pediatrics, March of Dimes Birth Defects Foundation and the Medical Society of the State of NY) is currently Professor of Pediatrics and Pathology at New York Medical College and Director of the Regional Medical Genetics Center at Westchester County Medical Center in Valhalla, New York. He is Board Certified by the American Board of Medical Genetics in both clinical genetics and clinical cytogenetics and by the American Board of Pediatrics. He is a Founding Fellow of the American College of Medical Genetics and is a Fellow of the American Academy of Pediatrics. Dr. Shapiro's interests involve the delineation and understanding of congenital malformations, mental retardation, cytogenetics and prenatal diagnosis. His most recent research interests have dealt with the Fragile X syndrome.
Jeffery P. Struewing, MD, MS (Evaluation Team and Steering Committee) received his medical degree from the Indiana University School of Medicine in 1985 and an MS in Preventive Medicine from the University of Maryland in 1988. He is a Senior Research Investigator at the Genetic Epidemiology Branch, National Cancer Institute, Bethesda, Maryland [Dr. Struewing is not representing any federal agency in his work on the Clinical Guidelines project]. Dr. Struewing's research interests focus on breast and ovarian cancer genetic epidemiology, molecular genetics, and policy.
Cherie Trabert, MS, RN, PNP (Steering Committee and Evaluation Team; representing the American Public Health Association - NYS Affiliate) is a pediatric practitioner whose practice specialty and setting is Public Health. She has directed public health programs in rural, HMO and proprietary home health agencies. In these capacities she has been intimately involved in the care of children with genetic disorders in the home setting. She has orchestrated new programming for these children through special grants. She has also participated in setting up breast cancer screening clinics in a rural area.
Lois Waldman, JD (Dissemination Team - representing the American Jewish Congress) graduated from Columbia Law School in 1950. She codirects the legal department and directs the Commission for Women's Equality at the American Jewish Congress. She is also the staff member on the agency's Bioethics Task Force and in that capacity has worked on reports on such topics as fetal tissue research, surrogate motherhood, health care proxies and physician-assisted suicide. She is on the Working Group on Hereditary Susceptibility of the National Action Plan on Breast Cancer. During the last several years, Ms. Waldman has organized, in concert with other national Jewish women's organizations, a series of conferences on breast cancer genetics. |

Send questions or comments to:
brcpg@health.state.ny.us
Revised: October 1999