Vol. 04 Issue 4, Late Fall 1999
Cancer Genetics Services in NYS
The Ribbon
Karen Greendale, MA, CGC
Director, Genetics Education and Information Program
Bureau of Chronic Disease Services
NYS Department of Health, Albany, NY
The Genetics Education and Information Program is located within the Bureau of Chronic Disease Services at NYS Department of Health. This article will focus on our activities relating to cancer genetics. Other cancer services programs within the Bureau are the Breast and Cervical Cancer Screening and Early Detection Program, the Colorectal Cancer Screening Program, the Prostate Cancer Education Initiative, and the Ovarian Cancer Information Program. The Genetics Program aims to educate NYS clinical and public health providers about genetic risk assessment, counseling and testing for a variety of cancers and to improve coordination and collaboration among genetic counselors and other professionals providing these services. Availability of DNA testing for BRCA1 and BRCA2 and media attention to the Human Genome Project have led to significant public interest in this rapidly evolving area. However, a small number of studies and significant anecdotal evidence indicate that providers are not yet sufficiently knowledgeable in this area.
Clinical Genetics Guideline
Supported by a grant from the NYS Department of Health, the American College of Medical Genetics convened a multidisciplinary group to develop and disseminate a document entitled "Genetic Susceptibility to Breast and Ovarian Cancer - Assessment, Counseling and Testing Guidelines". The teams were made up of representatives of professional societies, such as the American College of Surgeons, the National Society of Genetic Counselors, the American College of Radiology and the Medical Society of the State of New York, as well as advocacy groups such as the National Association of Breast Cancer Organizations. The guidelines provide background information, an algorithm outlining a recommended protocol, a sample family history questionnaire, an extensive justification section, and complete references. They present a balanced view of the benefits vs. burdens of genetic testing. The document suggests that a brief three generation family history should be drawn up for every patient seen by a primary care provider or non-genetics specialist so that those who would benefit from further risk assessment and discussion can be identified. The document describes the extensive genetic counseling required prior to genetic testing, but does not stipulate which patients should be referred to a genetic counselor or other specialist. The primary care provider may choose to handle certain cases or certain aspects of each case.
According to the Guidelines indications for consideration of genetic testing include:
- Three close relatives on the same side of the family with breast or ovarian cancer
- Having a family member with an identified mutation
- Age of onset < 45 in the patient or close relative
- One or more cases of ovarian cancer at any age and one or more cases of breast cancer at any age
- Multiple primary or bilateral breast cancer
- Breast cancer in a male relative
- Ashkenazi Jewish descent and family history of breast or ovarian cancer at any age
The Guidelines are now posted on the Department of Health website at www.health.state.ny.us - click on "information for providers"; "clinical guidelines". You can order a copy of the Executive Summary by contacting Skye Brown at (518) 486-2215.
Genetic Counseling Services
In NYS, we are fortunate to have many genetic counselors, distributed around the state, whose entire practice is focused on cancer genetics. Genetic counseling is a communication process which deals with the human problems associated with the occurrence, or the risk of occurrence, of a genetic disorder in a family. The process of genetic counseling involves an attempt by one or more appropriately trained individuals to help the affected individual or family to:
- Comprehend the medical facts, including the diagnosis, probable cause of the disorder, and the available management;
- Appreciate the way heredity contributes to the disorders, and the risk of recurrence in specified relatives;
- Understand the alternatives for dealing with the risk of recurrence;
- Choose the course of action which seems to be appropriate in view of their risk, their family goals, and their ethical and religious standards, and to act in accordance with that decision; and
- Make the best possible adjustment to the disorder in an affected family member and/or to the risk of recurrence of that disorder.
-- American Society of Human Genetics, 1975.
Genetic counselors working in the area of cancer review the family and personal medical history, facilitate collection and interpretation of medical records to confirm specific cancer diagnoses in relatives, provide comprehensive risk assessment, and discuss available options, including genetic testing, specific surveillance strategies, medical and/or surgical prophlaxis, etc. NYS genetic counselors specializing in cancer genetics work in the following institutions:
Albany Medical Center
Albert Einstein College of Medicine
Beth Israel Medical Center
Binghamton Genetic Counseling Program
Central Suffolk Hospital
Columbia-Presbyterian Medical Center
Long Island Jewish Medical Center
Memorial Sloan-Kettering Cancer Center
Mt. Sinai Medical Center
New York Breast Cancer Study at Sarah Lawrence College
New York University School of Medicine
North Shore University Hospital
Roswell Park Cancer Institute
St. Luke's - Roosevelt Hospital Center
Staten Island University Hospital
Strang Cancer Prevention Center
SUNY Health Science Center at Syracuse
University of Rochester Medical Center
Winthrop University Hospital
Most clinical geneticists and genetic counselors in the state see patients who are uninsured or underinsured. Fees are based on a zero-based sliding fee scale. No NYS resident should forego genetic counseling because of an inability to pay. Specific contact information is available from the Cancer Information Service at 1-800-4CANCER or call the Bureau of Chronic Disease Services at (518) 474-1222.
NYS Cancer Genetics E-mail List
To improve coordination and collaboration among those providing cancer genetic services in NYS and those interested in learning more about these issues, we initiated an e-mail list in February 1999. We are currently sending approximately five - ten messages per week to more than 125 geneticists, genetic counselors, public health administrators, Healthy Women Partnership technical advisors, members of NYS Cancer Advisory Groups, advocates, etc. The list keeps participants informed about relevant scientific articles, research projects, new clinical initiatives, and educational programs. Our goal is to expand the list to include more non-geneticists, and to encourage participants to keep each other informed through this means. To join our list, contact us at (518) 474-1222, or send an e-mail message to < KXG03@health.state.ny.us >.
Other Educational Activities
Genetics Education and Information Program staff and cancer genetic counselors in the state are available to lecture on this topic to your class or group. The Bureau has organized workshops on cancer genetics at the Division's Annual Meetings and presented to various Healthy Women Partnerships around the state. Since our program is unique in the US, we have also been asked to speak at many national meetings about incorporating genetics into chronic disease/adult health programs.
What's Next?
We are in the process of setting up a Genetics Working Group to help us to organize genetics services and strengthen ties with the various chronic disease programs. The Working Group will spearhead the development of a strategic plan which will guide our efforts and perhaps serve as a model for similar activities in other states. We specifically would like to increase our program's visibility and improve collaboration between genetics clinicians and the Healthy Women Partnerships. This will be accomplished through increased educational opportunities and piloting of a genetics risk-scoring tool in one of our partnership sites.
Program on Breast Cancer and Environmental Risk Factors