About Genetic Counseling
Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling. Genetic counselors usually work as members of a health care team, providing information and support to families that have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. Genetic counselors are also needed in non-patient settings, such as public health, research and laboratory medicine.
Over one thousand genetic tests are available through commercial laboratories and in research settings. Genetic counselors are trained to provide genetic services to people of every age and stage of life. No matter where they work, a genetic counselor’s job typically involves identifying families at risk for an inherited disorder, investigating the medical situation present in the family, interpreting information about the disorder, analyzing inheritance patterns and risks of recurrence, providing patient education and reviewing available medical options with the family. Genetic counselors also provide supportive counseling to families, serve as patient advocates and refer individuals and families to community or state support services. They serve as educators and resource people for other health care professionals and for the general public.
The following list shows the most common areas of medicine in which genetic counselors work:
- PRE-CONCEPTION
Genetic counselors often meet with individuals or couples who are concerned that they are at increased risk to have children with birth defects or a genetic disease. The genetic counselor can provide accurate information about the chance that the condition will happen again (risk for recurrence), determine if tests exist that will help define the risk, and counsel the couple about options for reducing the risk. Examples of pre-conception counseling include:
- Couples with infertility or multiple miscarriages.
- A person has a known or suspected genetic disorder that could complicate a future pregnancy.
- A person has a family history of a hereditary condition (e.g., cystic fibrosis or Duchenne muscular dystrophy).
- PRENATAL
Genetic tests are routinely ordered by obstetrics providers as recommended by the American College of Obestetrics and Gynecology (ACOG). Some of these tests screen for Down syndrome. Others screen for genetic conditions that are linked to the patient’s ethnic ancestry (e.g. Ashkenazi Jewish couples are at increased risk to have a baby with Tay Sach’s disease). Likewise, ultrasound screens may uncover problems that could indicate a genetic condition. When these situations occur, it is common for the provider to refer the pregnant patient to a genetic counselor. Even couples with healthy pregnancies may meet with a genetic counselor if the mother-to-be is age 35 or greater or if there is a family history of a hereditary condition.
- PEDIATRIC
Infants and children with suspected genetic conditions are referred to a medical genetics team, which usually includes an MD geneticist and a genetic counselor. The MD geneticist will do a thorough physical examination of the child and may order specific tests to make a diagnosis. The genetic counselor obtains a detailed family history, coordinates testing, provides patient education and links the family to relevant support services in the community. The reasons why a child may have a suspected genetic condition include:
- There was a prenatal diagnosis of a genetic condition, and the family is meeting with the genetics team as part of the child’s routine medical management.
- Newborn screening show abnormal results.
- A baby is born with birth defects.
- A child has autism or developmental delay.
- There is a family history of hereditary condition, and the parents want to know if their child has inherited it.
- ADULT
Genetic counseling for adults may involve meeting with a medical genetics team when the adult has features of a genetic condition, such as Neurofibromatosis or Marfan syndrome. Other types of adult genetic counseling are for “predictive genetic tests” or “presymptomatic tests.” Some of these tests may be offered in a primary care office or an oncology office—particularly those for hereditary blood clotting disorders or hereditary cancer. Some adults receive genetic counseling in a specialty clinic, such as a Huntington Disease Clinic, which involves a multidisciplinary team of providers who have specialized knowledge about that particular condition.
Genetic counselors frequently speak to clients about complex scientific and emotional topics. Usually the issues involve genetic conditions or birth defects or possibilities of such things occurring. The topic you bring to the genetic counseling session may determine the content of the discussion, however you can expect the genetic counselor to have specialized knowledge and be able to answer your questions, maybe even to anticipate some of your questions. Often, the genetic counselor acts as an interpreter for the medical information and a support person if the information turns out to be stressful.
Your genetic counselor may ask extensive questions about your family history, as this is the way we understand inheritance patterns. It might be helpful for you to use the opportunity of a pending genetic counseling visit to research the health and medical conditions of extended relatives.
A genetic counselor's primary concern is helping the client reach decisions which are appropriate for the client, or help a client adjust to complex information, uncertainties or new diagnoses. You may benefit from the genetic counselor's experience with other persons in an indirect way, however you should not expect that what is right for another client will be right for you.
An extensive listing of genetic counselors in the US and around the world can be found at the National Society of Genetic Counselors (NSGC) website.
Most genetic counselors have Master’s degrees from accredited genetic counseling training programs. Virginia has one training program for genetic counselors at Virginia Commonwealth University, which typically graduates 7 students each year.
The Accreditation Council for Genetic Counseling (ACGC) oversees the accreditation of genetic counseling graduate programs in the U.S. There are over 30 programs in the United States, including the program at MCV.
Genetic counselors have Master’s degrees from accredited genetic counseling training programs. Please click here for a list of these programs.
Through 1990, genetic counselors achieved certification by qualifying for and passing an examination prepared by the American College of Medical Genetics (ACMG). In 1995, the ACMG became a full member of the Council of Medical Specialty Societies which only certifies physicians and PhDs. The ABGC was thus established in 1993 to provide certification for Master’s trained genetic counselors.
Currently, in order to become a Certified Genetic Counselor (CGC®), one must obtain a Master’s degree in Genetic Counseling from an ACGC Accredited Program. Once all requirements have been met, one may apply and sit for the Certification Examination.
At this time, there are no other pathways through which a person can become a Certified Genetic Counselor.
Because Virginia does not have licensure, there are some individuals who use the title “genetic counselor” even though they do not have a Master’s degree in genetic counseling. Other practicing genetic counselors in Virginia have a Master’s degree in genetic counseling, but do not have certification through the ABGC.
The roles of medical geneticists and genetic counselors overlap depending upon where they work.
- A clinical geneticist typically is a physician who evaluates patients for a genetic condition in the office or as a hospital consultation. This process includes a medical history, family history (pedigree), a detailed physical examination, reviewing objective data such as imaging and test results, establishing a differential diagnosis, and recommending appropriate diagnostic tests. The geneticist may also help the patient manage his/her condition.
- A genetic counselor specializes in communication of genetic information to patients and families. S/he helps to educate the patient about the genetic condition and is also trained to provide risk assessment(e.g. what are this chances that this will happen again in the family). The genetic counselor can also link the patient to support resources. Genetic counselors often work closely with clinical geneticists or other physicians (such as obstetricians or oncologists) and often convey the results of the recommended tests. Genetic counselors may also order tests, but this is done under a collaborative agreement with a physician.