Updated as of 2009
American College of Medical Genetics
Association for Molecular Pathology
American Society for Clinical Pathology
Breast Cancer Action
College of American Pathologists
Lisbeth Ceriani
Wendy Chung, M.D., Ph.D.
College of Amercian Pathologists
Arupa Ganguly, Ph.D.
Genae Girard
Haig H. Kazazian, Jr., M.D.
David H. Ledbetter, Ph.D.
Runi Limary
Ellen T. Matloff, M.S.
Our Bodies Ourselves (Boston Women's Health Book Collective)
Harry Ostrer, M.D.
Kathleen Raker
Elsa Reich, M.S.
Vicky J. Thomason
Stephen T. Warren, Ph.D.
American College of Medical Genetics
Founded in 1991, the American College of Medical Genetics (www.acmg.net) is a national non-profit professional organization that advances the practice of medical genetics by providing education, resources and a voice for more than 1,400 biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics.
Michael S. Watson, PhD
Executive Director
ACMG Statement »
ACMG's activities include the development of laboratory and practice standards and guidelines, advocating for quality genetic services in health care and in public health, and promoting the development of methods to diagnose, treat and prevent genetic disease. Genetics in Medicine, published monthly, is the official ACMG peer-reviewed journal. ACMG's website (www.acmg.net) offers a variety of resources including Policy Statements, Practice Guidelines, Educational Resources, and a Medical Geneticist Locator. The educational and public health programs of the American College of Medical Genetics are dependent upon grants and contracts and charitable gifts from corporations, foundations, and individuals. The American College of Medical Genetics Foundation (www.acmgfoundation.org) is a 501(c)(3) not-for-profit organization dedicated to funding the College's diverse efforts to translate genes into health.
Association for Molecular Pathology
The Association for Molecular Pathology (AMP) is an international not-for-profit professional association representing over 1,500 physicians, doctoral scientists and medical technologists who perform laboratory testing based on knowledge derived from molecular biology, genetics and genomics.
Jan Nowak, MD, PhD
President
AMP Statement »
Since its founding in 1995, AMP members have dedicated themselves to the development and implementation of molecular diagnostic testing, which includes genetic testing in all its definitions, in a manner consistent with the highest standards established by the Clinical Laboratory Improvement Act (CLIA), the College of American Pathologists (CAP), the American College of Medical Genetics (ACMG) and the United States Food and Drug Administration (FDA).
AMP members practice their specialty in widely diverse settings, including academic medical centers, independent medical laboratories, community hospitals, federal and state health laboratories, and the in vitro diagnostic industry. In this capacity, AMP members are involved in every aspect of molecular diagnostic testing: administration and interpretation of molecular diagnostic tests, research and development, and education.
As the only professional association dedicated solely to molecular pathology, AMP provides national leadership for the advancement of safe and effective practice and education for molecular diagnostic testing in the health care industry.
American Society for Clinical Pathology
Founded in 1922, the American Society for Clinical Pathology (ASCP) is the largest and oldest organization representing the medical specialty of pathology and laboratory medicine. ASCP has 130,000 members working as pathologists and laboratory professionals.
Barbara McKenna, MD
President
ASCP Statement »
ASCP members design and interpret the tests that detect disease, predict outcome, and determine the appropriate therapy for the patient. ASCP is recognized for its excellence in continuing professional education, certification of laboratory professionals, and advocacy – championing causes at the state and federal levels. ASCP is a not-for-profit entity organized for scientific and educational purposes and dedicated to patient safety, public health, and the practice of pathology and laboratory medicine.
Breast Cancer Action
Karuna Jaggar
Executive Director
BCA Statement »
Breast Cancer Action (BCA) is the advocacy and educational watchdog of the breast cancer movement. A not-for-profit, national organization, it receives no funding from any corporation that manufactures any products linked to breast cancer including pharmaceutical and medical companies.
BCA's mission is to carry the voices of people affected by breast cancer to inspire and compel the changes necessary to end the breast cancer epidemic. It seeks to fulfill that mission by carrying out a three-part program of breast cancer activism:
- work to ensure more effective and less toxic treatments both at the FDA and drug companies,
- protect everyone's health by removing environmental toxins that are linked to breast cancer, and
- eliminate inequities in breast cancer incidence and mortality.
College of American Pathologists
Debra Leonard
MD, PhD, FCAP
CAP Statement »
The College of American Pathologist (CAP) was moved to participate as a plaintiff in the Myriad suit because of its longstanding policy on gene patents that these patents used to prevent physicians and clinical laboratories from providing gene-based diagnostic test services limit access to medical care, jeopardize its quality, and raise its cost. CAP also has long believed that limiting gene-sequence based test services to a single provider is not in the public interest as it interferes with medical training, practice, and research, the advancement of medical knowledge, and enhancement of the public’s health.
The College also believes that genomic medicine will be the cornerstone of diagnostic testing and treatment and that pathologists are the key to genomic test selection, interpretation and clinical integration. Gene patents interfere with pathologists’ practice of medicine and hurt patients.
“Invalidating Myriad Genetics’ patents on BRCA1 and BRCA2, would be a huge victory for patients,” said Debra Leonard, MD, PhD, FCAP, Chair of the College of American Pathologist’s Personalized Health Care Committee. “It would allow women to receive life saving, state-of-the-art genetic tests without being forced to trust one provider or one laboratory performing a single test to secure a diagnosis or inform treatment,” Dr. Leonard said.
Lisbeth Ceriani
Lisbeth Ceriani
Personal Statement »
Lisbeth Ceriani is a single mother of one daughter. She lives in Newton, Massachusetts. She was diagnosed with bilateral stage IIA breast cancer in May 2008.
Wendy Chung, M.D., Ph.D.
Wendy Chung, M.D., Ph.D. is a clinical and molecular geneticist and director of Clinical Genetics at Columbia University. She is the director of the fellowship program in molecular genetics and cytogenetics at Columbia and directs both a clinical and research molecular genetics laboratory.
Wendy Chung, MD, PhD
Personal Statement »
She has been conducting research in human genetics for the last 17 years in the areas of obesity, diabetes, breast cancer, pulmonary hypertension, inherited arrhythmias, congenital heart disease and spinal muscular atrophy.
In her work, Dr. Chung works to identify new genes for susceptibility to complex genetic traits to develop individualized risk assessment, prevention and therapeutic interventions for a wide variety of disorders.
Dr. Chung is a recipient of the American Academy of Pediatrics Young Investigator Award and is currently the Herbert Irving assistant professor of pediatrics and medicine at Columbia. She received her Ph.D. from Rockefeller University and her M.D. from Cornell University Medical College.
College of Amercian Pathologists
The College of Amercian Pathologists (CAP) is a national medical society representing more than 17,000 pathologists who practice anatomic pathology and laboratory medicine in laboratories worldwide. It is the world's largest association composed exclusively of board-certified pathologists and pathologists in training worldwide, and is widely considered the leader in laboratory quality assurance. The College's Commission on Laboratory Accreditation is responsible for accrediting more than 6,000 laboratories domestically and abroad and approximately 23,000 laboratories are enrolled in CAP's proficiency testing programs. CAP is an advocate for high-quality and cost-effective medical care.
Arupa Ganguly, Ph.D.
Arupa Ganguly, Ph.D. is an Associate Professor of Genetics at the Hospital of the University of Pennsylvania and co-director of the Penn Medicine Genetic Diagnostic laboratory. Dr. Ganguly provides clinical molecular genetic testing services for hereditary diseases such as certain forms of colon cancer and hemophilia.
Arupa Ganguly, PhD
Personal Statement »
Dr. Ganguly also works with Dr. Charles Stanley of the Children's Hospital of Philadelphia in an effort to understand the molecular genetics of a congenital disorder in which the body produces abnormally high levels of insulin.
Dr. Ganguly received her Ph.D. in Biophysics from the University of Calcutta. She is a fellow of the American College of Medical Genetics.
Genae Girard
Genae Girard
Personal Statement »
Genae Girard is a business owner, artist and writer who lives in Austin, Texas. She was diagnosed with breast cancer in July 2006 at age 36.
Haig H. Kazazian, Jr., M.D.
Haig H. Kazazian, Jr. is the Seymour Gray Professor of Molecular Medicine in Genetics in the Department of Genetics at the University of Pennsylvania School of Medicine. Dr. Kazazian received an A.B. in Biology from Dartmouth College in 1959 and a medical degree from the Johns Hopkins University School of Medicine in 1962. He also had a post-doctoral fellowship at the Johns Hopkins University School of Medicine.
Haig Kazazian, MD
Personal Statement »
Throughout his career as a genetic scientist, Dr. Kazazian has made numerous seminal contributions in understanding and deciphering mechanisms that cause mutations leading to human disease. One such mechanism that he discovered is called a transposable element, or "jumping gene," which is a segment of DNA that can move around to different positions in the genome of a single cell and cause mutations.
In his lifetime of scientific discoveries, Dr. Kazazian's revolutionary research has had a significant impact on unraveling the genetic causes of human disease. His discoveries have benefited the public health by informing the creation of new and improved methods for diagnosing and treating genetic conditions.
David H. Ledbetter, Ph.D.
David H. Ledbetter, Ph.D., is the Robert W. Woodruff Professor of Human Genetics and Director, Division of Medical Genetics at Emory University in Atlanta. He previously served as Chief of the Diagnostic Development Branch at the National Center for Human Genome Research of the National Institutes for Health, and as the Marjorie I. and Bernard A. Mitchell Professor and Founding Chair of the Department of Human Genetics at the University of Chicago.
David Ledbetter, PhD
Personal Statement »
After identifying the genetic mutations that cause Prader-Willi syndrome and Miller-Dieker lissencephaly syndrome, Dr. Ledbetter has devoted his career to developing and improving genetics diagnostic technology and improving access to genetic testing for families affected by genetic disease. He oversees a large, comprehensive genetics diagnostic program at Emory. He and his faculty colleagues have played major roles in the organization and leadership of national and international projects for quality improvement in genetic testing, including a National Laboratory Network for Rare Genetic Disease Testing, the Collaboration, Education and Test Translation (CETT) Program, and the International Standard Cytogenomic Array (ISCA) Consortium and Public Database.
Runi Limary
Runi Limary
Personal Statement »
Runi Limary is 32 years old, Asian-American and lives in Austin, Texas. She was diagnosed with breast cancer when she was only 28.
Ellen T. Matloff, M.S.
Ellen T. Matloff, M.S., is a certified genetic counselor specializing in cancer genetics. Ms. Matloff received a Bachelor of Science degree cum laude from Union College, and a Master's in Genetic Counseling from Northwestern University.
Ms. Matloff currently serves as the Director of Cancer Genetic Counseling at a major cancer center in Connecticut and previously worked at SUNY Health Sciences Center in Syracuse, NY.
Ellen Matloff, MS
Personal Statement »
She specializes in hereditary breast and ovarian cancer and BRCA1 and BRCA2 testing, has written dozens of articles and book chapters on this topic, and lectures on cancer genetics nationally and internationally. She is board certified by the American Board of Genetic Counseling and is a member of the National Society of Genetic Counselors, the American Society of Human Genetics and the American Society of Clinical Oncology.
Our Bodies Ourselves (Boston Women's Health Book Collective)
Judy Norsigian
Executive Director
OBOS Statement »
Our Bodies Ourselves (OBOS), also known as the Boston Women's Health Book Collective, is a nonprofit, public interest women's health education, advocacy, and consulting organization. OBOS produces books with accessible, research-based information about health, sexuality, and reproduction so that they can make informed decisions.
As an international education organization, OBOS advances women's health and human rights within a framework of values shaped by women's voices and commitments to self-determination and equality. OBOS accepts no funding from pharmaceutical companies and tries to be scrupulous about conflict of interest.
Harry Ostrer, M.D.
Dr. Harry Ostrer is Professor of Pediatrics, Pathology and Genetics at the Albert Einstein College of Medicine of Yeshiva University and Montefiore. He previously served as Professor of Pediatrics, Pathology, and Medicine and Director of the Human Genetics Program at New York University School of Medicine. He practices medical genetics, investigates the genetic basis of human diseases and disabilities and, in the diagnostic laboratory, translates the findings of genetic discoveries into tests that can be used to identify people's risks for having a disease prior to its occurrence. With support from the National Institutes of Health, the Department of Defense, the Jewish Women's Foundation and private donors, he studies the genetic basis of prostate and breast cancer and adverse outcomes associated with their treatment.
Harry Ostrer, MD
Personal Statement »
Dr. Ostrer has sought to promote fairness in the use of genetic information by acting as an adviser to the National Institutes of Health, the National Action Plan for Breast Cancer, the Jewish Leadership Council, the Council of Insurance Legislators, the American Academy of Actuaries, the Society of Actuaries and the New York State Task Force on Life and the Law. As a member of the New York State Bar Association's Committee on Biotechnology and the Law, he aided in the drafting and review of all pending and enacted legislation on genetic testing, reproductive technologies and human cloning.
He received his undergraduate degree in physics from the Massachusetts Institute of Technology and his M.D. degree from Columbia University. He subsequently trained in pediatrics and in medical genetics at Johns Hopkins University and in molecular genetics at the National Institutes of Health. Dr. Ostrer has received awards from Rensselaer Polytechnic Institute, March of Dimes Birth Defects Foundation, Skin Cancer Foundation and Weizmann Institute of Science.
Kathleen Raker
Kathleen Raker is a 41-year-old mother of two who lives with her family in North Central Pennsylvania. Both her mother and maternal grandmother died from breast cancer.
Kathleen Raker
Personal Statement »
Elsa Reich, M.S.
Elsa Reich is a genetic counselor, certified by the American Board of Medical Genetics since 1982 and the American Board of Genetic Counseling since 1993. She has been at the New York University School of Medicine since 1974, where she is a Professor of Pediatrics. After attending Radcliffe College for three years, she graduated with a major in philosophy and biology from the University of Chicago. Subsequently, she received her master's degree in genetic counseling from Sarah Lawrence College in 1974. While at NYUSM she has provided genetic consultation and counseling to thousands of patients including prenatal, pediatric and adult patients as well as contributing her expertise in specialty clinics, most particularly in the Institute of Reconstructive Plastic Surgery's Craniofacial Program. Since 1996 she has provided counseling and testing to individuals and families concerned about a hereditary predisposition to cancer and currently spends a significant fraction of her clinical activities providing this care. In this role, she has provided care to almost 2000 individuals and families.
Elsa Reich, MS
Personal Statement »
She has been active in several professional groups, serving on the boards of the National Society of Genetic Counselors, the American Board of Genetic Counseling, the Advisory Board of the Prenatal Diagnosis Laboratory of New York, the New York Genetics Task Force, and the Treacher Collins Foundation and currently serves on the Medical Advisory Board of Sharsheret. She has been active in New York State in the effort to establish licensure for genetic counselors and has taught medical students and residents at NYU and its affiliates and since 1978 has taught graduate students in genetic counseling at Sarah Lawrence and more recently at Mt. Sinai Hospital. She has lectured widely to professional and lay groups both nationally and internationally.
She was awarded the Kaplun "Art of Listening Award" from the Alliance of Genetic Support Groups, the Regional Leadership Award, Region 2, from the National Society of Genetic Counselors, and the Natalie Weissberger Paul National Achievement Award from the National Society of Genetic Counselors.
Vicky J. Thomason
Vicky Thomason
Personal Statement »
Vicky Thomason is in her early '50's and lives near Lexington, Kentucky. She works as a midwife for horses. She was diagnosed with ovarian cancer three years ago.
Stephen T. Warren, Ph.D.
Dr. Stephen T. Warren is the William Patterson Timmie Professor of Human Genetics and the founder and chair of the Department of Human Genetics at Emory University. He also holds appointments as Professor of Biochemistry and Professor of Pediatrics.
Dr. Warren is a founding fellow of the American College of Medical Genetics and a diplomat of the American Board of Medical Genetics with specialty certification in both clinical cytogenetics and clinical molecular genetics. He was elected to the Board of Directors of the American Society of Human Genetics in 1997, where he served as president for 2006. In 1984, Dr. Warren was a visiting scientist at the European Molecular Biology Laboratory. From 1991 until 2002, he was an investigator for the Howard Hughes Medical Institute. He was editor-in-chief of The American Journal of Human Genetics from 1999 until 2005.
Stephen Warren, PhD
Personal Statement »
Among Dr. Warren's awards are the Albert E. Levy Faculty Award from Emory University, a MERIT award from the National Institute of Health, the William Allan Award from the American Society of Human Genetics, and the Frontiers in Clinical Neuroscience Award from the American Academy of Neurology. In 1996, he was awarded the inaugural William Rosen Research Award from the National Fragile X Foundation and, in 2006, was given this award an unprecedented second time. In 2003, he was an inaugural inductee of the National Institute of Child Health and Human Development's Hall of Honor for the "identification of triplet repeat expansion as the cause of fragile X syndrome and as an entirely new inherited mechanism of genetic disease." In 2004, Dr. Warren was elected to the Institute of Medicine of the National Academies and in 2007 was presented the Outstanding Alumni Award from Michigan State University.
Dr. Warren received his Ph.D. in Human Genetics from Michigan State University in 1981 and from 1981 to 1985 was a fellow at the University of Illinois College of Medicine.