Genetic counselors are trained to provide counseling to a wide variety of patients. Thousands of genetic disorders have been identified. Following are a few examples of indications for which an individual or family may receive genetic counseling. The indications may be classified according to age and the stage of life, as follows.

PRECONCEPTION: Individuals or couples who are concerned that they may be at increased risk to have children with birth defects or a genetic disease meet with genetic counselors to obtain accurate information about their risk, testing to help define the risk, and options for reducing the risk. A few examples include:

• Individuals with a family history of a genetic condition (e.g., cystic fibrosis or Duchenne muscular dystrophy)
• Couples in which one or both members have a genetic disorder
• Couples in which one or both members are of an ethnic group with increased risk for certain genetic diseases (e.g., Ashkenazi Jewish, at risk for Tay Sachs disease)
• Individuals or family members of an individual with a chromosome abnormality
• Individuals with a family history of mental retardation

PRENATAL: Individuals or couples may be referred to a genetic counselor for any of the above reasons. A few additional indications may include:

• Couples who wish to have prenatal genetic testing (e.g., amniocentesis, chorionic villus sampling) due to advanced maternal age or screening tests indicating an increased risk for a condition such a Down syndrome
• Couples whose fetus is identified with a genetic disorder, structural anomaly (e.g., spina bifida) or chromosome abnormality (e.g., Down syndrome)
• Couples with a previous child with or a family history of a genetic condition

PEDIATRIC: In the pediatric setting, families often meet with a medical geneticist in an effort to establish a diagnosis for their child’s condition. A geneticist may also provide recommendations for medical management of the condition. Genetic counselors may meet with the patients and their families to provide information about the disorder, the risk of recurrence of the disorder, availability of genetic testing for the patient and/or family, and sources of support for the family. A few examples of genetic disorders in pediatric patients whose families are seen by genetic counselors include: chromosome abnormalities (e.g., Turner syndrome), fragile X syndrome, sickle cell anemia and muscular dystrophy.

ADULTS: Individuals with a personal and/or family history of an adult-onset genetic condition may be referred to a genetic counselor. Genetic counseling for adults includes risk assessment and education about the genetic nature of the condition, options for genetic testing and the implications of testing, particularly in presymptomatic cases. Those identified with an inherited predisposition are counseled about their specific risks, options for risk reduction and resources for them and their at-risk family members. A few adult disorders for which a person might see a genetic counselor include: neurodegenerative disorders (e.g., Huntington Disease), connective tissue conditions (e.g., Marfan syndrome) and cancer.

WHY IS IT IMPORTANT TO HAVE LICENSURE FOR GENETIC COUNSELORS AT THIS TIME?

• For protection of the public.
Existing laws, whether trade, civil or criminal, do not protect the consumer from unqualified practitioners, as no legal scope of practice has been defined and standards for professional conduct have not been legally established for genetic counseling services. Licensure will provide a specified scope of practice, which may only be performed legally by licensed individuals. Licensure provides the authority to take disciplinary action should the licensee violate provision of the law or rules. Licensure assures that the public health, safety, and welfare will be reasonably well PROTECTED against unqualified practitioners.

• To improve access to genetic counseling services.
At this time, genetic counseling is not reimbursable through third party payers, but is required for many forms of genetic testing. As a result, some institutions are not able to offer such services, thereby diminishing the public’s access to qualified practitioners. Patients who do not receive genetic counseling or receive inaccurate genetic counseling may have unnecessary testing or may not be given access to appropriate testing. Formal recognition of genetic counselors via licensure will allow the public to gain ACCESS to the valuable services of genetic counselors. Without our state government assuming a regulatory role, the public is at risk of being dangerously underserved as the economic pressures on health care institutions mount.

• To ensure that genetic counselors are qualified.
With the rapid increase in genetic knowledge resulting from the Human Genome Project, the range of genetic services that are being provided to patients and to the public has greatly expanded. Moreover, these services have become increasingly more complex and require a unique combination of scientific knowledge and counseling skills that genetic counselors are trained to provide. Genetic testing has proliferated and is predicted to be integrated into all areas of medicine. Licensure of genetic counselors will help ensure that those who are providing genetic information to the public are properly trained and possess the necessary skills and knowledge. Licensure will ensure that only QUALIFIED individuals will use the title genetic counselor and will provide genetic counseling. Presently, there is no legal mechanism in place that provides assurance to a consumer that a genetic counselor will be informed about all current genetic information and technologies. (i.e., there is no requirement for continuing education.).

• To hold genetic counselors accountable for providing accurate information.
Currently genetic counselors, although widely used, are not recognized as licensed health professionals. Some individuals are providing genetic counseling without formal training and some patients who need counseling do not receive it. If a patient is referred to and sees a genetic counselor who provides negligent services, the patient has no legal recourse. Other states have recognized and addressed these problems by regulating genetic counselors through licensure. Licensure for genetic counselors will provide a mechanism to hold genetic counselors ACCOUNTABLE for the information they provide to patients, ensuring high quality care for the citizens of Indiana, and providing RECOURSE if inappropriate care is provided.