Media Kit

Senator Enzi
Education, Labor & Pensions
United States Senate

Dear Senator Enzi:

The National Society of Genetic Counselors (NSGC) is pleased to respond to your email from June 15, 2004, requesting comment on the supply and demand for master-level genetic counselors in the health care workforce. Formed in 1979, the NSGC furthers the development of the genetic counseling profession with quality educational programs, the issuance of practice recommendations, and advocacy for our clients and the public health. The NSGC has a growing membership of more than 2,000 genetic professionals working in a variety of practice settings including medical centers, pharmaceutical companies, testing laboratories, private practice, public health, government agencies and educational programs. The majority of practicing genetic counselors are active members of the NSGC. The following information should prove useful in your consideration of funding for health professional education and training.

Professional Background
Genetic counselors are healthcare professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling. In 2003, approximately 80% of NSGC members were Board Certified by the American Board of Genetic Counseling or the American Board of Medical Genetics.

Genetic Counselors are the primary interface between clinical genetic counseling and testing services and the public. Genetic counselors work with clients throughout the lifecycle, providing services for clients dealing with preconception issues, prenatal diagnosis, the diagnosis of neonatal or childhood genetic disorders, and adult genetic services for diseases such as cancer, presenile dementia, psychiatric disorders, and heart disease. Genetic counselors have expertise in providing risk-assessment and counseling to individuals and families who have been impacted by a genetic conditions. They are experienced in explaining the benefits and limitations of genetic information and technology. Genetic counselors are also trained to communicate complex genetic disease information to the public, professional organizations and government agencies. NSGC members act as patient advocates, interface with testing laboratories and researchers, and provide quality healthcare. They are skilled in clinical research methods, IRB procedures, and coordinate many clinical trials.

Training Program Trends
Our Society’s data clearly indicates that the number of genetic counselors graduating from accredited training programs rises by about 20% annually. Ten years ago, there were 17 masters-level genetic counseling programs accredited by the American Board of Genetic Counseling (ABGC) with 105 graduates per year. In 2003, there were 25 accredited genetic counseling training programs in the United States and three additional programs in Canada; at least 5 additional programs inquired with the ABGC regarding potential development in the next few years. Also during 2003, estimates suggest that 550 individuals applied to genetic counseling programs, and 270 students graduated from the US programs. According to available data from program directors, there are no less than two to three qualified applicants for every genetic counseling training spot, and candidate qualifications are similar to candidates entering doctoral programs and medical schools nationally.

Genetic Counselor Workforce
Currently in the United States there are approximately 2100 actively practicing genetic counselors. This exceeds the number of physician and PhD certified geneticists or advanced practice nurse geneticists. However, the concentration of genetic counselors remains primarily in urban areas and affiliated with major medical centers. Table 1 illustrates the state distribution of NSGC full members, representing the majority of genetic counselors nationally.

The NSGC’s membership is comprised of a diverse and innovative group of individuals who work and provide expertise in areas of patient care, public health, biotechnology, research and industry. Genetic counselors can be found in hospitals, universities, private practices, research labs, commercial labs, pharmaceutical companies, biotechnology companies, nonprofit organizations, and a variety of other professional settings (Table 2).

The genetic counselor workforce is comprised of primarily women under the age of 40, with most having fewer than 5 years of experience in the genetic counseling profession. This demographic has remained stable since 1980. Since the genetic counseling workforce is relatively young, retirement loss is a minor issue for our profession. There is a need, however, for increased minority representation with the profession. Currently greater than 95% of genetic counselors are Caucasian, so NSGC and graduate program directors have committed to an initiative to increase minority recruitment.

Demand for Services
Nationwide, genetic counselors serve over 1.5 million clients each year. From the year 2000 to 2002 there was a 66% increase in the number of clinical patients seen by all counselors. With the field of genetics quickly revolutionizing how medicine is practiced and an increasing number of genetic tests becoming available, this number is expected to continue to rise.

One measure of the demands of genetic counseling services is the employment status of new graduates. According to the 2002 NSGC Professional Status Survey, 75% of genetic counseling graduates are employed within a month of graduation, and less than 3% take more than seven months to obtain employment. Although not every genetic counseling position in the country is posted on the NSGC job connection service, there continues to be a steady increase in postings. (Figure 1).

Conclusions
The completion of the Human Genome Project and the rapidly increasing knowledge of genomics are indicators of how our understanding of human genes and their contribution to disease is growing. Genetic knowledge and technologies are becoming increasingly relevant to mainstream health care in the form of genetic tests to detect disease and risk of disease. New discoveries in genetics will impact individuals, communities, and societies. In addition, health officials and those who make public policy will be faced with integrating genetics into relevant policies and programs. The current explosion of genetic medicine demands subject matter experts who can communicate genetic risk, assist healthcare professionals and individuals with decision-making regarding genetic testing and treatment options.

While there is a need to improve genetic competency of all health professionals, genetic counselors are ideally equipped with the unique set of skills and knowledge required to respond to the needs of these groups, and will be a primary resource to them as they adapt to these changes. The role of the genetic counselor in society will continue to expand alongside the expansion of this knowledge about genomics. Therefore, there is a need to increase the number of genetic counselors to participate in clinical care, provide education to consumers and health professionals, develop and implement genomic and genetic counseling research agendas, develop public policy and work with industry.

As was presented earlier this year to the Secretary’s Advisory Committee on Genetics, Health and Society with access to start-up funds, the NSGC estimates that the number of genetic counselors in the workforce could easily double in as little as 5 years. The United States Senate can assist in this process by ensuring that Congress provides funding, specifically to genetic counseling training programs, through titles VII and VIII of the Public Health Services Act. This funding will enable existing genetic counseling programs to expand enrollment and emphasis minority recruitment. It will also provide the ability for genetic counselors to expand genetic services to rural and other underserved patient populations. Additionally, the genetic counseling profession needs access to start-up funding for new genetic counseling training programs.

The National Society of Genetic Counselors is available as a resource for further workforce assessments or to provide expertise in developing funding initiatives to support genetic counseling training programs. Please feel free to contact me at (312) 926-7466 or k-ormond@northwestern.edu if you have additional questions, or if we can be of further assistance.

Sincerely,

Kelly E. Ormond, MS, CGC
President

Table 1. Genetic Counselors by State (N=1767). This table reflects NSGC membership and therefore is not inclusive of all practicing genetic counselors, and it does not reflect students in training, associate members or emeritus members (source NSGC Executive Office 10/04).

Table 2. Work Settings and Specialty Areas, NSGC Bi-annual Professional Status Surveys, 1996-2002

	1994	1996	1998	2000	2002	2004
Primary Work Settings
University Medical Center	47%	45%	47%	44%	43%	41%
Hospital/Medical Facility	25%	27%	24%	29%	31%	31%
HMO	7%	5%	7%	6%	5%	4%
Diagnostic Laboratory	5%	5%	6%	5%	6%	7%
Fed/State/Co Office	4%	4%	3%	2%	2%	3%
Physician Offices	3%	3%	5%	5%	4%	5%
Outreach/satellite/filed clinic	2%	2%	1%	1%	1%	-
Self-employed/private    practice	2%	2%	1%	1%	2%	?
Other	6%	6%	4%	5%	4%	4%
Specialty Area of Counselors
Prenatal	77%	52%	70%	59%	56%	55%
Pediatric	51%	18%	45%	39%	39%	36%
Prenatal screening (maternal  screen)	44%	1%	26%	22%	11%	11%
Teratogen	40%	1%	25%	20%	12%	12%
Public Health/Newborn Screening	8%	2%	6%			7%
Adult	30%	2%	31%	26%	28%	24%
Specialty Disease Counseling	26%	3%	20%	17%	15%	14%
Cancer Genetics	10%	8%	34%	34%	42%	39%
Molecular/Cyto/Biochemical Testing	23%	2%	12%	12%	6%	7%
Neurogenetics	6%	1%	8%	7%	7%	9%
Psychiatric Genetics				1%	1%	1%
Infertility/ART				6%	7%	8%
Other	5%	7%	16%			8%

Figure 1. Number of new jobs for genetic counselors listed with the NSGC job connection service 1994 to 10/1/04. (Source NSGC Executive Office).

Return to top

Return to News Room