Each student will complete the following process:
1. First the student "patient" will be given a choice of diseases on a list compiled by you. Each patient will choose a different disease. Choices must be given to you 1 week before starting the project to assure each student has a different disease to research. If you have more than 18 students, you may want to give out duplicate diseases, or you could have the students work in pairs.
Diseases to Study:

Alzheimer Disease
/ Hemochromatosis
/ Phenylketonuria
Beta-Thalassemia
/ Hemophilia
/ Polycystic Kidney Disease
Cystic Fibrosis
/ Huntington Disease
/ Sickle Cell Disease
Down Syndrome
/ Marfan Syndrome
/ Tay-Sachs Disease 1
Duchenne/ Becker Muscular Dystrophy
/ Neurofibromatosis 1
/ Tay-Sachs Disease 2
Fragile X
/ Neurofibromatosis 2
/ Tay-Sachs Disease 3

[It may be easier to create a list to check off as they confirm their diagnosis. You may want to print out this Student Tracking Sheet to keep track.]
2. Each student will research and review their disease carefully for information to put in their pamphlet. Based on the disease of choice, they will visit the preceding website links in order to explore their disease and other various genetic diseases and their symptoms. This will help them to make quality choices for their pamphlet.

Glossary1Glossary 2 for clarification of terms
3. Once they have researched their disease, they will consult and confirm the diagnosis with you, their physician of 20 years, before proceeding further.
5. They will print and record their research in their scientific journalas a way to guide and organize their research. For their research, they will need to identify the:

  • symptoms
  • causes
  • incidence
  • tests and screening
  • treatments
  • how it is inherited
  • facts and theories
  • expected quality of life for the patient
  • additional thoughts and questions

6. In order for them to conduct their research, they have been provided with the following Internet resources:
Sites with Various Genetic Disease Information:
Genetics Home Reference:The U.S. National Library of Medicine provides a service that includes this guide to understanding genetic conditions. Includes information on what is new, a handbook, glossary, resources, a search box, and the browse option for exploring more information on each disease.
Genetic Information and Patient Services:a non-profit organization providing information on the Internet about genetic disorders and birth defects. Includes definitions of disorders, resources, and a glossary.
Genetic Disorders: The National Institutes of Health, National Human Genome Research Institute provides an overview of genetic diseases and information on some specific genetic disorders.
Blazing the Genetic Trail, Howard Hughes Medical Institute: Information on why there are so many errors in our DNA, how genetic disorders are inherited, and how to conquer a genetic disease.
Genetic and Rare Conditions Site, U of Kansas Medical Center: Includes advocacy and support groups, information on genetic conditions and birth defects, and national and international organizations.
Sites for Specific Genetic Diseases:

Alzheimer Disease
/ Fragile X
/ Neurofibromatosis
Beta-Thalassemia
/ Hemochromatosis
/ Phenylketonuria
Cystic Fibrosis
/ Hemophilia
/ Polycystic Kidney Disease
Down Syndrome
/ Huntington Disease
/ Sickle Cell Disease
Duchenne/ Becker Muscular Dystrophy
/ Marfan Syndrome
/ Tay-Sachs Disease

7. Each intern will also need to visit your school or local public library and use (1) print resource to obtain additional information on the disease. The print resource may be an encyclopedia, a book, or a magazine.
8. Remind them to always cite their sources that were used for their research and presentation. There is a space at the bottom of the scientific journalfor recording citations. If they need help, following one of these links:
OSLIS Citation Maker or NoodleBib 5.
Citation Examples:
Webpage Citation: Last Name, First Name Middle Name. "Specific Page or Article Title." Title of Entire Web Site. Date Web Page Was Last Revised. Sponsoring Organization. Date You Read It <URL>.
9. Once they have investigated the genetic disease, they will create a Microsoft Word document and create a pamphlet (Grading Rubric here) to present to their fellow medical interns at the 2004 Lakeside Genetic Disease Conference. This will be an opportunity for them to give an oral and/or multimedia presentation using graphics on the results of their research. Professionals often meet at conferences in order to present and share ideas and discoveries with their colleagues. Also, if students complete their pamphlet earlier than other students, there are genetic crossword puzzles, cryptograms, and other games at the Gene School '99 website.]
12. For the disease that they were diagnosed with and investigated, what would they recommend to the family of others based on what they have learned? After researching and creating this pamphlet the patient should be able to discuss:

  • What tests or screening would you suggest to confirm the diagnosis?
  • Would you recommend further testing of the parents or siblings?
  • How would you explain to the family how the disease is inherited?
  • What treatment would you suggest as the best one?
  • Do you know anyone personally with this type of inherited disease?
  • What is the prognosis for this patient?
  • Once you have learned what it is like living with the disease, do you have any ideas on how to make life easier for this patient?

This lesson is designed to include:

  • One class period for the presentation of their pamphlets and to answer questions. This should save time in the computer lab the following day.
  • Two 60 minutes class periods in the computer lab with each student having their own computer with headphones.
  • Three to four class periods to complete the Microsoft Word creation process for students who are familiar with MS Word. Allow for more time if they are not familiar.
  • Two or three days for the presentations. This would vary depending on the number of students presenting. This webquest was designed for one class of 17 students and one class with 15 students.

Total class periods needed are 8-11 sixty minute periods.

The teacher will need to be familiar with computers and MS Word.

Variations

You might consider inviting parents and others to attend the presentations at the conference. This will give the students an opportunity to present to the community. Also, you might invite a genetic researcher or genetic counselor to the class to answer students' questions.