What is Genetic Counseling?
March of Dimes Genetic Counseling
A genetic disorder is a disease or defect that is inherited and may not always be noticeable at birth. Genetic counseling is a medical service, which may determine a recurrence risk, help the family understand the disorder, and answer questions or concerns. Counseling includes sharing information, discussing the risk of recurrence, helping the family cope with the diagnosis, and assisting the family with objective decision-making. When you see a genetic counselor, your family history will be requested, as well as your own medical background. Providing information on the diagnosis is essential for the patient and their family members. The information may include appropriate educational materials, information about managing the disorder, and a list of available resources. After the genetic counseling visit, a letter is sent to the referring doctor summarizing the visit with any recommendations. This process provides continuity of care between the geneticist, the referring doctor, and the family.

Who benefits from Genetic Counseling?
Pre-Pregnancy Counseling
People who might be interested in genetic counseling include: those who have concerns that they may have an inherited disorder or birth defect, women who become pregnant after the age of 35, couples who have a child with mental retardation, an inherited disorder or a birth defect, couples who have an infant with a genetic disease detected by expanded newborn screening, couples who are closely related or have genetic defects which occur frequently in their family or ethnic group, and women who have had three or more miscarriages or babies who died in infancy.

Why is my child referred to a dysmorphologist or clinical geneticist?
Sometimes an individual is referred to determine whether there is a specific diagnosis to explain developmental or medical problems. Sometimes the individual being evaluated already has a specific diagnosis, in which case the purpose of the appointment is to convey information regarding the condition and to provide genetic counseling to family members. Sometimes an individual is referred so the specialist can help direct the management of a specific birth defect (such as cleft lip and palate).

What will happen during the visit?
Prior to the initial visit, information is obtained concerning family history, the pregnancy and delivery of the person being evaluated, and past evaluations. During the first visit the clinical geneticist performs a detailed physical examination. If further laboratory testing is necessary, arrangements are made to complete the evaluation. In some instances an individual will need sequential evaluations to clarify a diagnosis. Please bring family photographs to the appointment, as they may be invaluable in discerning familial resemblance.

What is a family history?
A family history is a multigenerational, medical, and social story. Family histories can provide important clues to the cause of a problem or to the type of testing that should be considered. The taking of a family history involves questions about the health/developmental status of parents, siblings, their offspring, and distant relatives, whether they are living or dead. It involves information about miscarriages and early deaths. It involves questions about ethnicity and family origin. For the clinical geneticist, knowledge of genetic background is helpful in determining whether or not a genetic contribution to the problem in question should be considered.

Who should receive genetic counseling?

• Women age 35 years or older who are considering pregnancy
• Parents of stillbirths or infant deaths resulting from unknown or genetic causes
• Individuals with personal or family history of known or suspected genetic disorders
• Women exposed prenatally to a known or suspected teratogen
• Mothers with two or more pregnancy losses
• Couples with common relatives
• Couples with close biological relationship of parents
• Couples with infertility
• Infants with abnormal newborn screening results
• Person with one or more major malformations in any organ system
• Individuals with abnormalities in growth, either overgrowth or undergrowth
• Families with physical or mental disability affecting more than one family member
• Individual with familial occurrence of cancer, such as breast, ovarian or colorectal
• Patients who have an early onset of common disorders, such as heart disease, breast cancer, Alzheimer disease, or mental illness
• Families with DNA testing for known gene disorders
• Individuals with abnormalities or delays in growth or body proportions
• Individuals with delayed or abnormal development of secondary sexual characteristics or organs
• People with deafness or blindness
• People with unusual appearances and/or behavior

What about payment for genetic services?
In North Dakota the cost of genetic services varies. If your insurance policy does not cover genetic services, the Division of Medical Genetics has a sliding fee schedule. No North Dakotan is denied services for financial reasons. If you find yourself unable to pay for needed services, please contact our office. We will work with you in locating appropriate assistance.

How do I receive genetic services?
Contact your healthcare professional for a referral or contact our office at 701-777-4277.