Genetic Susceptibility to Breast and Ovarian Cancer:
Assessment, Counseling and Testing Guidelines
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| New York State Department of Health Genetic Susceptibility to Breast and Ovarian Cancer: Assessment, Counseling and Testing Guidelines |
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G. REPRESENTED SOCIETIES
The Alliance of Genetic Support Groups
The Alliance of Genetic Support Groups is a national coalition of voluntary genetics organizations, consumers and professionals. Serving as a bridge between people who are affected by genetic conditions and the health professionals who provide services to them, the Alliance offers a forum for addressing family needs across a spectrum of disabilities. In addition, the Alliance promotes the sharing and prompt dissemination of new information about strategies and technologies related to genetic services. They publish a newsletter and a Directory of National Genetic Voluntary Organizations and Related Resources. Cancer-related organizations which belong to the Alliance include: The Gilda Radner Ovarian Cancer Registry, The Susan G. Komen Breast Cancer Foundation, IMPACT, Candlelighters, The National Breast Cancer Coalition, The National Coalition for Cancer Survivorship, Y-Me, and the National Assocation of Breast Cancer Organizations.
The American Academy of Family Physicians
The American Academy of Family Physicians (AAFP) is a national non-profit medical association of more than 85,000 family physicians, family practice residents, and medical students. The AAFP's mission is to improve the health of patients, their families and the American people; advance and represent the specialty of family practice; and serve the unique needs of its members with professionalism and creativity. Several of the AAFP's strategic directions are relevant to this project:
The American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer through research, education, advocacy and service. It is one of the oldest and largest voluntary health agencies in the US, with over two million Americans united to conquer cancer through balanced programs of research, education, patient service, advocacy and rehabilitation. The ACS consists of a National Society, with chartered Divisions throughout the country and over 3,400 local Units. The ACS is the largest private source of cancer research funds in the US. Its prevention activities focus on: controlling and preventing the use of tobacco in all its forms; educating about the relationship between diet and cancer; advocating that schools provide a comprehensive program of health education including cancer prevention; and reducing the risk of skin cancer. The Society provides the public and health care professionals with the latest information on developments in early cancer detection and treatment. Through its advocacy program, the Society educates policy makers about cancer and how it affects the individuals and families they represent.
American College of Medical Genetics
In 1990, the American Society of Human Genetics Board of Directors appointed a committee to evaluate the needs for and feasibility of establishing a College or Academy to oversee the provision of genetic services nationally, to represent the providers of these services and their patients with genetic disorders, and to elevate the rapidly emerging specialty of Medical Genetics to full representation within the established medical service, certification and regulatory organizations. The committee recommended the establishment of the American College of Medical Genetics (ACMG) which was incorporated as an independent body in December 1991. The ACMG is committed to making genetic services available to the American public without regard to age, race, national origin, gender, sexual orientation, disability or ability to pay. The College fosters the development and implementation of methods of diagnosis, treatment and prevention of genetic disease in order to improve the public health. It sponsors educational programs for geneticists, the medical community and the public at large. The College's Committee on Professional Practice and Clinical Guidelines, among other activities, is responsible for the development, implementation and evaluation of clinical guidelines in medical genetics.
American College of Medical Genetics Foundation
The American College of Medical Genetics Foundation is organized exclusively for charitable, scientific, and educational purposes. More specifically, the Foundation aims to stimulate and support research, education, and knowledge in the field of medical genetics with the overall objective of advancing the art and science of medical genetics, fulfilling the medical genetic needs of the public, and, thereby, improving the public health.
American College of Obstetricians and Gynecologists
The American College of Obstetricians and Gynecologists (ACOG) is the nation's leading group of professionals providing health care for women. As a private, voluntary, nonprofit organization, ACOG serves as a strong advocate for quality health care for women; maintains the highest standards of clinical practice and continuing education of its members; promotes patient education, and stimulates patient understanding of and involvement in medical care; and increases awareness among its members and the public of the changing issues facing women's health care. Founded in Chicago in 1951, ACOG's membership has grown to more than 37,000 physicians specializing in obstetric-gynecological care.
American College of Physicians
The American College of Physicians (ACP) is the largest society of internists and allied subspecialists in the world. Founded in 1915, the ACP's mission is to enhance the quality and effectiveness of health care by fostering excellence and professionalism in the practice of medicine. ACP's goals include:
The NYS Chapter of the ACP has 10,000 members.
The American College of Radiology (ACR) is a non-profit professional society with more than 30,000 members. The society's purposes are to advance the science of radiology, improve service to the patient, study the socio-economic aspects of the practice of radiology and encourage continuing education for radiologists and persons in allied professional fields. The ACR has been instrumental (since 1987) in developing an accreditation program for the practice of mammography, a program which was adopted nationally in the form of the Mammography Quality Standards Act (MQSA) in 1992 and administered by the Food and Drug Administration (FDA). The mission of the program has been to provide women with high quality, uniform standards of practice in mammography.
The American College of Surgeons (ACOS) was founded in 1913 to improve the standard of patient care. It is now the largest organization of surgeons in the world, with over 56,000 members. There are 97 chapters; 67 of these are in the US. An elected Board of Regents governs the College. Fellows have passed a rigorous evaluation process regarding education and training, professional qualifications, surgical competence and ethical conduct. Activities of the College include sponsoring continuing medical education programs, participating in programs for patient care such as the Commission on Cancer and the Committee on Trauma and in the legal realm through the Socioeconomic Affairs Department, and providing educational services to the public through the Office of Public Information. Monthly publications from the ACOS include the Jorunal of the American College of Surgeons and "Bulletin", a news magazine for fellows.
The American Jewish Congress (AJC) is an organization of American Jews with 50,000 members nationwide. Its mission is to protect fundamental constitutional freedoms and American democratic institutions and to advance social and economic justice, women's equality and human rights at home and abroad. Its Commission for Women's Equality is an activist leaders' group of Jewish women and men whose goal is to vigorously pursue full equal rights for women within a Jewish context. Its Bioethics Task Force, composed of prominent bioethicists, medical doctors, patients, rabbis and others learned in the field, makes recommendations to the governing bodies of the AJC with respect to the ethical, legal and public issues created by advances in science and medical technology. The AJC became interested in the issue of medical genetics and breast cancer as a result of the research concerning the genetic predisposition of Ashkenazi Jews to breast and ovarian cancer. The AJC has been conducting conferences and distributing educational materials to help Jewish women understand the genetics of breast cancer and become aware of ongoing research and proposed legislative initiatives to prevent genetic discrimination and protect medical record confidentiality.
Biotechnology Industry Organization
The Biotechnology Industry Organization (BIO) is the largest trade organization to serve and represent the emerging biotechnology industry in the United States and around the globe. As the leading voice for the biotechnology industry, BIO represents 720 biotechnology companies of all sizes, academic institutions and state biotechnology centers engaged in the development of products and services in the areas of biomedicine, diagnostics, agriculture food, energy, environmental, and industrial applications. BIO is a vital forum and an invaluable focal point to bring together the resources and expertise to meet critical challenges and serve the needs of its members.
Council of Regional Networks for Genetic Services
The Council of Regional Networks for Genetic Services (CORN) was formed in 1985 to provide a forum for dialogue and national coordination among the ten regional genetics networks representing all fifty states, the District of Columbia, Puerto Rico, and the Virgin Islands. CORN brings together network representatives to encourage and facilitate communication and planning for genetics services as well as to address national public health priorities in genetics. The CORN membership includes representatives from each of the regional genetics networks, national sickle cell disease programs, and the Alliance of Genetic Support Groups, and consists of genetic services providers, public health officials, consumers, and health care professionals. Goals of CORN include: to enhance the sharing of information and resources among the regional genetics networks in order to develop genetic services programs and evolving technologies; to assist states and regions in collecting genetic services data; to develop a system of quality assurance in specialized laboratory and clinical genetic services; to plan and coordinate educational programs and information on genetics for health care professionals and consumers; to explore and advocate for methods of reimbursement for genetics services; to advocate for policies to ensure a comprehensive integrated approach to the provision of genetics services; and to promote national efforts to improve professional and public awareness of human genetics and its impact on health and disease. CORN is a Special Project of Regional and National Significance (SPRANS), as are the ten regional networks, and is supported in part by the Genetic Services Branch, Maternal and Child Health Bureau, Health Resources and Services Administration, US Department of Health and Human Services.
Healthcare Association of New York State
The Healthcare Association of New York State (HANYS) serves as the key advocate for over 400 voluntary and public hospitals, nursing facilities, home care agencies, hospice and adult day care programs, diagnostic and treatment centers, health systems, and other related health care facilities throughout New York State. Established in 1925 as a non-profit organization, HANYS is recognized as one of the most active organizations of its kind in the nation. HANYS' three major functions are representation, communication, and advocacy. These activities are directed by the Association members through the Board of Trustees and committee structure, regional representation, and statewide meetings and conferences. HANYS develops policies in the interest of its members, and acts on behalf of members on matters before State and federal legislative bodies and regulatory agencies. Its ultimate goal is to achieve a stronger, more stable health care system where individual members can pursue their fundamental mission of providing cost-effective, high-quality health care to the residents of their communties. HANYS' fee-for service divisions, HANYS Services, Inc. and the Group Insurance Agency, Inc, provide health-care related products, consulting services and insurance programs. An affiliate, the Healthcare Educational and Research Fund, provides quality educational seminars and workshops tailored to meet the needs of the health care community.
The HMO Group is a national affiliation of HMOs which were originally all physician-led staff or group model HMOs. Most are rapidly evolving to mixed model organizations. The HMO Group member plans have a combined enrollment of over 7 million members. Through The HMO Group, member plans conduct a number of activities designed to improve the process and outcome of care. Examples of collaborative activities include information sharing, bench-marking, quality improvement, demonstration projects, disease management, utilization management and technology assessment.
International Society of Nurses in Genetics
The International Society of Nurses in Genetics (ISONG) is an organization which fosters scientific and professional growth of nurses in genetics. It is committed to defining the role of the genetics nurse, at both basic and advanced practice levels, and to integrating genetics into clinical practice, research and education in order to improve all aspects of genetics services. The organization has recently developed a scope and standards of practice; it is also examining opportunities for certification of nurses in genetics. As with the other professional genetics organizations, ISONG is working to promote high standards of health care and education in genetics, and is addressing the personal, ethical, legal and social issues arising from scientific and clinical developments in genetics. The activities of the ACMG's Clinical Guidelines Committee are consistent with ISONG's philosophy in this regard. ISONG currently has 160 members, and is involved in liaison relationships with other professional genetics and nursing organizations.
Medical Society of the State of New York
The Medical Society of the State of New York (MSSNY) is a federation of 61 county medical societies in NYS, and is one of the medical societies that comprise the American Medical Association. Among the purposes of the MSSNY are the following:
National Alliance of Breast Cancer Organizations
The National Alliance of Breast Cancer Organizations (NABCO), established in 1986, is a leading non-profit central information resource on breast cancer and an umbrella organization for a network of 375 breast cancer organizations. Aside from its role as a source of up-to-date, accurate information for patients, families, media, medical organizations and professionals, NABCO staff spend time locally, on the state level and in Washington, as advocates for regulatory change and legislation which benefits breast cancer patients. With public and corporate partners, NABCO has collaborated on educational and medical programs that have been successful in reaching a national audience, heightening public awareness and connecting women with needed services. Membership in NABCO is open to both individuals and organizations and includes a subscription to the quarterly NABCO News which monitors developments in breast cancer research, programs and policy. Members also receive the annual Breast Cancer Resource list, a comprehensive compilation of breast cancer publications, materials, and resources. NABCO recently participated in the American Society of Clinical Oncology Train-the-Trainer Workshop on Cancer Genetics Education and will continue to play an important role in providing information and education about genetic testing, publishing written educational materials in the newsletter and on the website, and advocating for legislation to prevent both employment and insurance discrimination based on genetic information. For more information on NABCO or breast cancer detection, treatment and research, call (888) 80-NABCO or visit NABCO's home page at http://www.nabco.org.
National Society of Genetic Counselors
The National Society of Genetic Counselors (NSGC) is the leading voice and advocate for the genetic counseling profession. There are currently 1,500 enrolled members of the Society; most are master's level genetic counselors. NSGC serves as a forum for discussion of professional, social and ethical issues relating to the practice of genetic counseling. It is dedicated to enhancing the quality of genetic counseling services, and to educational efforts to enable members to remain current in the field. The Familial Risk Counseling Alliance was formed in 1991 to allow genetic counselors and other health professionals to share experiences and information in the newly emerging field of cancer genetics. In 1994, the Alliance became the first Special Interest Group of the NSGC; it now has more than 100 members. With support from the NSGC, this group provides continuing education for members involved in cancer risk assessment and testing for cancer susceptibility gene mutations, maintains a directory of genetic counselors with expertise in this area, and has initiated an e-mail communications network for rapid access to information.
New York State Public Health Association
The New York State Public Health Association (NYSPHA) is an affiliate of the American Public Health Association. Its members come from all areas of Public Health practice, such as physicians, nurses, social workers, mental health workers and environmentalists. Its mission as an organization is to promote the public's health through all levels of prevention. Its members are involved with all areas of genetics practice as they care for all age groups in their home settings. The Public Health Departments in many of our counties administer the programs that care for children and adults with genetically-related conditions in their homes, at their schools, and in day care locations.
New York State Society of Internal Medicine
The New York State Society of Internal Medicine (NYSSIM) is a federation of 16 local component societies of Internal Medicine covering all of New York State. NYSSIM was incorporated in 1957 to fill a need for a dynamic organization of internal medicine specialists -- vitally interested in the quality of medical care in the ever-changing social, economic and scientific aspects of internists' practice. NYSSIM is also one of the component societies of the American Society of Internal Medicine (ASIM), which represents internists in every state. ASIM is a well respected and effective voice for internal medicine in the political and socioeconomic arena today. This network of local, state and national organizations represents internists' interests via a grass roots, democratic process. NYSSIM and ASIM are run by the membership. Open elections and free debate determine their policies.
The New York State Task Force on Life and the Law
Convened by the Governor in 1985, the New York State Task Force on Life and the Law has a mandate to develop public policy on a host of issues arising from medical advances, including the withholding and withdrawal of life-sustaining treatment, assisted suicide and euthanasia, assisted reproductive technologies, organ and tissue transplantation, and genetic testing. The Task Force members include leaders in the fields of law, medicine, nursing, philosophy and bioethics, as well as patient advocates and representatives of diverse religious communities.
Upstate New York Society of Medical Oncology and Hematology
The Upstate New York Society of Medical Oncology and Hematology (UNYSMOH) was founded in 1991. The membership includes medical oncologists and hematologists practicing in upstate New York and is presently comprised of 104 physicians. The purposes of the Society are as follows:
Presently three UNYSMOH members are active members of the Upstate Cancer Genetics Screening Service. |
Send questions or comments to:
brcpg@health.state.ny.us
Revised: October 1999