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Ethical Decision Making Model
Dealing with Genetic Disorders*

Kenny Vawter
1994 Woodrow Wilson Biology Institute


Background

Students may be faced with a genetic disorder that will take counseling and much thought to arrive at decisions that could change their lives. Even if students are not faced with the genetic disorder directly, they may have to make decisions that affect them as taxpaying citizens. Using a wide variety of genetic related scenarios may help them to be prepared when confronted with this type of situation. You can also use the model to show students that genetic disorders do not discriminate against race, gender, or socio-economic status, but are directly related to DNA that has been passed down from ancestors or mutations.

Procedure

  1. Place students in groups that you are comfortable with. I place students in groups of three of four that are as diverse as possible.
  2. Have students read case study.
  3. Have students recognize the problem and answer the questions on the decision-making model.
  4. After students are finished, bring the class together and ask individuals about the assignment.
  5. Try to bring out as many different ideas as you can, and try to express that all students are entitled to their own opinions.

Case History

Jack and Diane had struggled hard to make it through college at the University of Houston. Both had taken out student loans and worked full time to make it through. The hard work paid off when Jack got his first electrical engineering job at a large computer company in Houston making $35,000 a year. Diane graduated with a degree in child development and started a little day care center in their new suburban home outside Houston.

Things were going so well they decided to make an addition to the family, and luckily enough, nine months later, a bouncing baby boy arrived. Danny seemed to be a perfectly healthy baby boy. When Danny started to walk, he fell a lot, as most children do. On one occasion Danny hit his head on the coffee table and cut himself above his right eye. As concerned parents, Jack and Diane took Danny to their local pediatrician to see if he needed stitches.

As they were driving, Diane commented that the bleeding would not stop. When the pediatrician began sewing up the eye, he knew that there was more to the cut than just a simple laceration. The doctor asked the concerned parents if Danny was a hemophiliac. To this point they had never had any reason to suspect that their little boy had any problems with blood clotting. The doctor took some blood and sent it to the lab to be analyzed. Their fears were confirmed; Danny was hemophilic.

Hemophilia is an X-linked recessive characteristic that usually occurs in males. If a mother is a carrier of the recessive gene there is a 25% chance she will have a child who is a hemophiliac. If females are born with hemophilia they are certain to have problems during their magical moments (puberty). To treat this problem, victims are given transfusions of Factor VIII, which is one of the platelet chemicals that healthy people produce to clot blood. The cost of the Factor VIII transfusions can run up to $80,000 a year per patient. Luckily for Jack and Diane they had insurance through his company. The insurance paid 90% of the bills so that left $8,000 to be paid by Jack and Diane. This put a small stress on their marriage. However, they decided to have another child, even though they knew there was a 25% chance their next child could be a hemophiliac also.

Would you continue to have more children if your first child were a hemophiliac?


Bio-Ethical Decision-Making Worksheet

  1. Write a short paragraph explaining the dilemma about what you would do if you had a child who was hemophilic and you and your wife wanted to have more children.

  2. List at least five different alternatives you could make instead of having another child.

  3. List at least five values you have about the decision that you would take in having another child, and write a brief explanation of each value.

  4. List at least five values you have about the decision that you prefer least.

  5. Describe any conflict(s) you see in the values you used to support your preferred decision and the values you used to support your least-preferred decision.

  6. List as many advantages and disadvantages that you can think of if your preferred idea was made a law world wide. (Hint: How would this effect government, religion, economics, community, world population, science technology, etc...)

  7. Now that you have implemented your idea worldwide, circle how strongly or weakly you feel about your #1 alternative. (1 being weakest, 10 strongest.)

    1--2--3--4--5--6--7--8--9--10



*Inspired by Dr. Jon Hendrix at Ball State University.


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