Genetic Counseling

The profession of genetic counseling, a relative newcomer to the field of counseling, has been on the leading edge of innovation since its inception in the 1970s. Significant advances in medical technology over the past 40 years have led to breakthroughs in genetic testing along with subsequent improvements in the prevention, analysis, and treatment of genetic disorders. Due to these remarkable developments, the profession of genetic counseling has come to the forefront to meet the challenges of the 21st century and beyond.

Genetic counseling is most commonly defined in the literature as the evaluation of a couple’s medical and family history in order to determine the health hazards to a fetus due to a variety of causes. These include exposure to teratogens in the womb (environmental risk factors that adversely affect the fetus), chromosomal damage, and genetic birth defects. According to the Centers for Disease Control and Prevention, approximately 3% of babies are born with birth defects each year.

Some of the most commonly known genetic disorders, such as Down syndrome, congenital heart defects, cystic fibrosis, muscular dystrophy, and spina bifida, are the result of an inherited condition or a genetic mutation at conception or in vitro. Disorders such as Huntington disease and Marfan syndrome can be inherited from just one parent. Other diseases such as Tay-Sachs and sickle cell anemia are found in certain ethnic racial groups and are inherited when both parents carry the gene for the disorder.

Not every expectant parent is a candidate for genetic counseling or testing. Couples are encouraged to seek out this option when the following risk factors are present:

• Prenatal screening tests show abnormalities.
• An amniocentesis procedure uncovers chromosomal abnormalities.
• There is a family history of birth defects or an inherited disease.
• Previous children born to the couple have genetic disorders or existing birth defects.
• The expectant parent is over the age of 35.
• The expectant parent has had two or more miscarriages, a stillbirth, or a child who died early in infancy.
• Either parent is a member of a particular ethnic or racial group that has a high incidence of genetic predisposition to a disease or disorder.
• There is a history of drug and alcohol abuse in either parent.

When expectant parents decide to pursue the option of genetic testing, sophisticated tests are performed to identify the possibilities of passing on inherited disorders. The test results are then analyzed and interpreted by genetic counselors who work in conjunction with the couple’s doctor to help parents assess their options and make decisions about how to proceed with the pregnancy as well as the subsequent birth of the child. Genetic counselors function as part of a healthcare team and act as advocates and referral sources to the families they serve. Supportive counseling is also provided to couples who are dealing with emotional issues that arise as a result of learning that their child has a serious genetic condition.

Preparing for a Career in Genetic Counseling

People enter the field of genetic counseling from a variety of specialties, including nursing, social work, genetics, biology, psychology, public health, and counseling. Genetic counselors are highly trained health professionals with specialized education, usually at the master’s degree level. Training includes courses in medical genetics, communication, critical thinking and counseling skills, psychosocial assessment, case management, and the legal and ethical considerations inherent to the profession.

In order to be certified as a genetic counselor by the American Board of Genetic Counseling (ABGC), an individual needs to complete academic and supervised clinical training at an accredited graduate program. To date, there are 22 fully accredited genetic counseling programs in the United States, 7 with “provisional accreditation” or classified as “recognized new programs” by ABGC and 1 with “probational accreditation.” Training programs go through a rigorous evaluation process in order to receive accreditation by ABGC. There are also numerous international programs located in Australia, Canada, China, Cuba, France, Israel, Japan, the Netherlands, Norway, Saudi Arabia, South Africa, Spain, Sweden, Taiwan, and the United Kingdom.

Candidates for certification in the United States must also pass two exams: a general one assessing human genetics knowledge and a specialized genetic counseling exam. These exams are offered in 2-year cycles, and an individual needs to pass both exams in two consecutive exam cycles in order to become an ABGC Diplomate and Certified Genetic Counselor. Professional certification is voluntary, and an individual needs to be recertified every 10 years in order to retain the right to use the registered title of Certified Genetic Counselor. Doctors and nurses specially trained in the field of human genetics also provide genetic counseling.

Demographic information on genetic counselors is collected every 2 years through a detailed professional status survey. The number of certified genetic counselors has increased from 673 in 1993 to a total of 2,035 in 2005. The field continues to grow as new areas for professional development are created. The 2004 survey indicated high job satisfaction in most areas, with the exception of the possibilities for advancement in the field. A portion of the respondents reported that they were considering leaving the field due to job burnout, changing professional interests, and limited opportunities for advancement.

Traditional genetic counselors that specialize in prenatal counseling work in a variety of settings, including medical centers, hospitals, and private practice. A number of genetic counselors work in administrative and research capacities. Today, however, increased opportunities in the field have opened up new career avenues, including those in business, education, and public policy. In 2002, the median income for genetic counselors with master’s degrees and up to 5 years of clinical experience ranged from $47,000 to $56,000 per annum.

A Historical Perspective on Genetic Counseling

The first class of master’s degree level genetic counselors graduated from Sarah Lawrence College, in Bronxville, New York, in 1971. The National Society of Genetic Counselors was incorporated in 1979. Its vision was to become the voice, professional authority, and advocate of the genetic counseling field, and its stated mission was to uphold the burgeoning profession as a distinguished and legitimate part of the healthcare delivery system in this country.

As early as 1973, genetic counseling professionals began to reflect on the feasibility of starting a professional society at the International Genetics Meeting in Paris. In 1977, the idea took hold with a group of graduates and students from the Sarah Lawrence College training program. By April 1978, a committee to form the society was established and bylaws were considered. However, the society did not have a smooth beginning. At a meeting in Williamsburg, Virginia, to discuss the training role and function of genetic associates, a highly vocal group of physicians protested the use of the term genetic counselors to define master’s level professionals in the field. They also protested the plan to exclude medical geneticists (physicians with training and fellowships in medical genetics) from full membership in the new society.

By June 1979, after consulting with legal counsel, the title of “genetic counselor” was adopted by the bylaws committee in spite of the continued protests by some in the medical profession. The society took on the name of the National Society of Genetic Counselors (NSCG), and the first two issues of the society’s newsletter had been published. Additionally, regional districts had been established, the bylaws had been filed, and the society had been incorporated in New York State by October 1979. Two of the officers in the fledgling society were appointed to the American Board of Medical Genetics as of 1980, further legitimizing the profession. The organization continued to grow and expand throughout the 1980s, and in 1992 the American Board of Genetic Counselors became a separate entity from the American Board of Medical Genetics. Henceforth, the ABGC became responsible for the accreditation of training programs and the certification of genetic counselors, while the NSGC continued as the advocacy and education arm of the profession.

Recent Innovations

The field of genetic counseling continues to diversify and grow. Genetic counselors come from a variety of backgrounds, such as teaching, graphic design, molecular biology, nursing, fundraising, and the public health arena, and a number of them have multiple degrees. Their former training and multiple degrees make these individuals’ skills increasingly marketable in a changing field.

Genetic counselors can be found working in a number of nontraditional settings. These nontraditional roles include conducting research in biogenetic businesses and universities, teaching genetic counseling training programs, and working in diagnostic laboratories, Internet companies, the pharmaceutical industry, administration, and public health. According to the most recent professional status survey, an increasing number of genetic counselors are becoming health consultants and going into private practice.

References:

1. Evans, C. (2006). Genetic counseling: A psychological approach. New York: Cambridge University Press.
2. Heimler, A. (1997). An oral history of the National Society of Genetic Counselors. Journal of Genetic Counseling, 6(3), 315-336.
3. Parrott, S., Clark, C., & DeVecchio, M. (2004 and 2007). National Society of Genetic Counseling professional status survey analyses. Boston: Information Solutions.
4. Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., et al. (2006). A new definition of genetic counseling: National Society of Genetic Counselors’ task force report. Journal of Genetic Counseling, 15, 77-83.
5. Shiloh, S., Gerad, L., & Goldman, B. (2006). Patients’ informational needs and decision-making processes: What can be learned from genetic counselees. Health Psychology, 25, 211-219.

See also:

• Counseling Process