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Access Excellence Classic Collection

Genetic Counseling: Coping With The Human Impact Of Genetic Disease
Classroom Activity

Classroom Exercise #1

Risk Perception

Amniocentesis is usually offered to women who will be age 35 or older when the baby is born. Age 35 is used simply because by this age, the risk of amniocentesis (miscarriage) exceeds the chance of a chromosome abnormality in the baby. If amniocentesis were offered to every pregnant woman, the number of amniocentesis-related miscarriages would exceed the number of fetuses who had chromosome abnormalities. Thus, amniocentesis would be doing more harm than good.

Many people think that a 35 year old woman has a very high risk of having a baby with a chromosome problem and this risk rises dramatically at age 35. In point of fact, the risk does not rise too dramatically at 35. Indeed, the actual risk for a 35 year old woman to have a child with a chromosome problem is ~0.6%. Stated differently, the a 35 year old woman has a ~99.4% chance of not having a child with a chromosome abnormality. How you state the risk can determine if a patient perceives the risk to be high or low.

This can be demonstrated with a simple exercise. On 4 separate sheets of paper, write the following statements:

  1. The chance of a chromosome problem is 1 in 178.

  2. The chance of a chromosome problem is about one half of one percent.

  3. The chance of a chromosome problem is three to four times higher than other women.

  4. The chance of having a chromosomally normal child is greater than 99%.

Make enough copies so that each student gets one, and only one, of these statements. For example, in a class of 20 students, make five copies of each statement and pass out one statement to each student such that 5 students receive statement 1, 5 students receive statement 2, 5 students receive statement 3, and 5 students receive statement 4. Make sure the papers are folded such that the students cannot read their risk. Ask each student to read their statement, but not to share their statement with their classmates. Next, ask the students who perceive their risk as high to stand on one side of the class, the students who perceive their risk as low to stand on the other side of the class, and the students who can't decide if their risk is high or low to stand at the back of the class. Reveal to the students that the risk is the same, just stated in four different ways. Many students will be surprised at how their classmates perceived the risk.

Ask students to explain why they perceived their risks as high, low or uncertain (Uncertainty is common among patients, many of whom don't know how to perceive their risk and look to their physician for guidance).

Classroom Exercise #2

Do I Want To Know?

Alzheimer disease is a relatively common disorder characterized by profound memory loss which worsens over time. Eventually, patients with Alzheimer disease do not recognize loved ones, lose control over bodily functions, forget how to eat, and require specialized care in a nursing home. The age of onset is usually in the 70's, but can strike in the late 40's or early 50's.

In some families, Alzheimer disease is a dominant genetic disorder. This means that if the parent has the gene for Alzheimer disease, each child has a 50% risk of inheriting the gene. Every child, regardless of sex, who inherits the gene will eventually develop the disease.

Pretend that a simple DNA test, requiring no more than a blood sample, is available for a particular family where the father developed Alzheimer disease at age 52. The father was a physician who helped pioneer some important surgical treatments for heart disease; the mother is a college professor. They were a happy, close family and the father lived a full and complete life. However, the mother shouldered the burden of caring for her affected husband. The medical and nursing costs for her husband nearly exhausted the family's finances.

Assign 5 students to role-play the family, including:

  1. The healthy mother who is responsible for caring for her severely affected husband.

  2. A 32 year old daughter, a lawyer, who is beginning long term financial planning, hoping to retire early at age 55. She does not plan on having children.

  3. A 28 year old son who just got married and is thinking about having children.

  4. Identical twin sons, age 22, just completing college. One twin wishes to learn his risk status; the other twin is adamantly opposed to learning his risk status. However, because they are identical, if one twin learns his risk status, the other twin would automatically know his own risk status.

Have each child explain why they do or not want to learn their own risk status. Have the mother explain why she thinks each child should or should not have the test. What benefits would the test provide? What are the drawbacks to knowing risk status?

Some points to consider:

  1. Some students in your class may have experienced similar problems in their own families. Before assigning role playing, make sure the students are emotionally comfortable with their roles.

  2. Insurance companies and nursing homes may deny their services to people known to be at risk for Alzheimer disease.

  3. Alzheimer disease is not treatable or curable.

  4. Some people commit suicide when they learn from genetic testing that they will eventually develop severe neurological disease.

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