Michigan Cancer Genetics Alliance

Guide to the Genetic Counseling Process

 

This guide has been developed with a focus on primary care providers. It is a collaborative effort between the Michigan Cancer Genetics Alliance, the Michigan Cancer Consortium and the Michigan Department of Community Health.

The Michigan Cancer Genetics Alliance (MCGA) is a collaborative network that provides leadership, education and advocacy in issues relating to cancer genetics in Michigan. The organization also promotes research and communication, serves as a resource for expert information and facilitates translation of cancer genetics research into practice. For more information contact genetics@michigan.gov .

The Michigan Cancer Consortium is a collaborative group of organizations working together to reduce the human and economic impact of cancer in Michigan. For more information go to: http://www.michigancancer.org

For a list of Cancer Genetics Resources on the Internet click here

Who are Clinical Genetics Professionals1?

Medical Geneticist - A medical geneticist is usually an MD or a DO (occasionally a PhD) who has completed fellowship (or comparable) training in medical genetics. The American Board of Medical Genetics (ABMG) certifies medical geneticists. Medical genetics is a recognized subspecialty of the American Board of Medical Specialties (ABMS). The American Society of Human Genetics (ASHG) is the professional organization and the American College of Medical Genetics (ACMG) is the representative body for geneticists.

Genetic Counselor - A genetic counselor has completed a masters' level training program specializing in genetic counseling. The American Board of Genetic Counseling (ABGC) certifies genetic counselors. Before 1993, The American Board of Medical Genetics (ABMG) certified genetic counselors. The National Society of Genetic Counselors (NSGC) is the professional organization for genetic counselors.

Genetic Nurse - Genetic nurses are typically registered nurses or master' level nurses with special training in human genetics. The Genetic Nursing Credentialing Commission (GNCC) certifies genetic nurses. Their professional organization is The International Society of Nurses in Genetics (ISONG).

Staff certification and credentials displayed by clinics included in the Professional Directory of Cancer Genetic Clinical Services have not been verified for the directory. Certification and credentials can be verified at the following Web sites: Genetic Counseling Defined
Genetic counseling is a specialized health education process designed to help affected or at-risk persons understand genetic disorders and their impact, transmission, prevention, management, and treatment options. The counseling process, however, should help patients and their family members to understand that genetic testing is not always an option2.

Components of Risk Assessment, Genetic Counseling and Testing:

Persons who are determined to be at an increased risk for developing cancer by their primary healthcare provider should be referred for genetic counseling. Cancer genetic counseling is a consultative process whereby the patient's risk is evaluated by means of a review of personal and family history information. Once a patient's level of risk is identified they receive education regarding their level of risk, genetic testing, if available, screening options/frequencies and other diet and lifestyle issues relating to the type of cancer or a specific cancer syndrome. Persons who choose to have genetic testing will then have a second genetic counseling session to review test results and their meaning. Patients are referred back to their primary healthcare provider once the counseling process is completed. Referring care providers should receive a letter detailing information specific to their patient. The following are components of the risk assessment, and the genetic counseling and testing process:
I. Cancer Risk Assessment
A. Medical History Information
B. Family History Information
C. Physical Exam (when appropriate)
D. Determination of Level of Risk
II. Genetic Education
A. Education regarding the individuals level of risk
B. Discussion about whether genetic testing available/likely to be informative
C. Discussion about benefits, limitations and risks of genetic testing, when appropriate
D. Discussion of screening recommendations and follow-up if no genetic testing
III. Genetic Susceptibility Testing
A. Completion of the above steps
B. Signed informed consent in compliance with Michigan PA 29 of 2000
C. Specimen obtained for testing process (may be blood or tissue)
D. Education session regarding results of genetic testing
1. Known or unknown mutation in family
a. Negative
b. Positive
c. Uninformative
2. Diet & lifestyle considerations
E. Informing family members of a positive test result
IV. Follow-up Plan of Care
A. Screening recommendations based on results of genetic testing
B. Type of screening & frequency
V. Discussion of treatment and prevention options if appropriate
A. Prophylactic surgery
B. Chemoprevention, if appropriate
C. Discussion of available research protocols and clinical trials if appropriate

1 Information from Gene Tests website at: http://www.genetest.org
2 STAT!Ref Online Electronic Medical Library, ACP's PIER: The Physicians' Information and Education Resource, Philadelphia, PA, 2004 Available at: http://online.statref.com/document.aspx?fxid=50&docid=2424


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Updated 06/26/2008