Simulated Genetic Counseling Activity

Simulated Genetic Counseling Session: Classroom Activity
Debra Collins, M.S., CGC
Genetic Counselor Genetic Education Center University of Kansas Medical Center

OBJECTIVE: To help students understand the complexity of the human genome project and the impact of these technical advances on individuals' lives. The process of genetic counseling will be demonstrated using role play.
SUPPLIES: Paper, pencil, two students, one genetic counselor, certified by the American Board of Genetic Counseling (ABGC), or member of the National Society of Genetic Counselors (NSGC)
GRADE LEVEL: 8th - adult
CLASS TIME: 30-60 minutes, plus pre-class preparation
CONTENT: genetics principles and concepts, inheritance patterns, pedigree analysis, genetic condition(s), genetic counseling, probability, technology, laboratory and therapeutic management, methods of finding information, interpretation of information, collegial collaboration, and humanistic aspects of technology

DESCRIPTION:

I. Ask local genetic counselor to come as guest speaker.

II. Students (in teams of 4-5) complete a family history (pedigree) for a family with a genetic condition. Chose condition from list teacher provides, or from more well-known conditions, such as achondroplasia, cystic fibrosis, hemophilia, Huntington disease, Marfan syndrome, dwarfism, Down syndrome, Fragile-X syndrome, Tay-Sachs disease, sickle cell anemia, neurofibromatosis, etc.

The session goal is to understand the genetic counseling process, not the diagnostic process and medical facts per se, although these are likely to emerge.

A family history form, if available, from a genetic counseling center is helpful, but not essential. Students should use standard pedigree nomenclature (refer to medical/clinical genetics reference books). The pedigree can be completed prior to the session or during it.

III. Have 2-3 students as a "couple" or "family" come to front of class with genetic counselor. Have genetic counselor explain genetic counseling process: how appointments are usually made, what the counselor knows about the couple prior to the appointment, what records were obtained, or need to be obtained, what consultations or procedures might have been arranged. Counselor states several issues likely to emerge in counseling process, how session will change depending on the family's questions and concerns.

IV. Begin Session. Counselor introduction to family, interview of family, review of family pedigree, etc. As the session proceeds, counselor discusses various directions the counseling session could go. Proceed with the session with frequent "time outs" to explain the unspoken thoughts of the counselor such as concerns regarding each person's understanding of the condition, observations about couple interactions and family dynamics, issues which need to be addressed and the timing for these, concerns aired which may or may not be addressed in this counseling session, misconceptions of family. End session after ~20 min.

V. After session, discuss issues raised, including family issues, available technology, ethical, legal and social aspects. Discuss issues not addressed during session and why (time constraints, knowledge of other professional involvement, need for additional information before proceeding, etc.). Discuss adoption issues.

VI. Provide information about careers in genetics and answer student questions. Discuss methods and resources to find answers to genetic questions.

INTEGRATION: math, social studies, psychology, history, political science, philosophy, law, english, communications, human development.

REFERENCES:

Drawing a Family History / Pedigree

Instructions for Family History Diagram and Information Sheet , Genetics Education Center, University of Kansas Medical Center
U.S. Surgeon General's Family History Initiative, My Family Health Portrait (Download) New 2004
Pedigree Standardization Task Force Recommendations (.pdf), American Journal of Human Genetics (1995), 56:745-752
Bennett RL. The Practical Guide to the Genetic Family History. New York: John Wiley & Sons, Inc. 1999
Taking a Family History, from "The Genetic Family History in Primary Care" by R Bennett, Genetics Northwest, Vol 10(2 & 3), Dec 1995
Construction of the Pedigree, General Principles of Medical Genetics (Inherited Disorders), Merck Manuel
Taking Family Histories with Genetics in Mind, FLagay, Virtual Mentor, May 2001 Genethics, Vol 3(5), American Medical Associations
Importance of Gathering a Family History, American Medical Association, includes tools such as adult family history form, pediatric genetics questionnaire, prenatal genetic screening questionnaire, and sample pedigree
The Pedigree: A Basic Guide, by J Jorgenson, FE Yoder, and SD Shapiro, 1980, The Grendel Company, Post Office Box 733, Charleston, South Carolina 29402. Copyrighted by The Dorrington Corporation
Drawing Your Family Health Tree, Genetics Education Program, Royal North Shore Hospital, Sydney, Australia
Pedigree Drawing Programs
Bennett RL, Steinhaus KA, Uhrich SH, et al. Recommendations for standardized human pedigree nomenclature. Am J Hum Genet 1995; 56:745-752
Pedigree Chart, .pdf file, Ancestors PBS program
Family and Individual Record Charts, Ancestors PBS program
Taking a Family History, Assignment, Medical Genetics, 2001, LSUHSC
Family History Tools: The Importance of Gathering a Family History, American Medical Association (AMA), includes Prenatal Genetic Screening Questionnaire, Pediatric Clinical Genetics Questionnaire, Adult Family History Form, and Sample Pedigree New
Family History Form Draft, (.pdf) Centers for Disease Control (CDC) New

Ethical decision-making

A Framework for Ethical Decision-Making, Michael McDonald, Centre for Applied Ethics, also see Genetic Counseling literature, Bioethics / Health-Care Ethics, Fiction (novels and movies)
Ethical, Legal and Social Implications of Human Genome Project Resources, including ethics centers

Genetic Counseling