1. Genetic Testing for Huntington’s Disease
Should be on screen as participants enter the room.
Start workshop on time—do not wait for “stragglers”
Welcome participants as they enter the room
Do NOT do participant introductions unless the workshop group is a very small one (less than 10 people)
Introduce yourself and explain your teaching experience and current position
The activity that you will do today was developed by Life Sciences Learning Center at the University of Rochester. We found that teachers wanted access to the activities that we developed even after our grant support had ended.
To provide for sustained dissemination, we formed a small spin-off company called Science Take-Out. Explain that Science Take-Out, a small company that manufactures and sells hands-on science kits for middle or high school biology students
The company is a “spin-off” initially formed to disseminate hands-on laboratory activities developed by the Life Sciences Learning Center, an outreach center at the University of Rochester.

2. Please complete the “Participant Card”
Because this workshop is supported through a grant from the National Institutes of Health, it is important that we collect data from workshop participants.
Please fill in the participant card during the workshop.
Use the space at the bottom and the back of the card to provide comments on the workshop or the kits used during the workshop. 2 2

3. Envision classroom use
Put your student hat on
Experience the kit
Put your teacher hat on
Envision classroom use
Curriculum integration
Support for students
When we do hands-on workshops we ask you to switch between two hats as you work—your student hat and teacher hat.
We want to you work with partners to experience the kit by completing the activity
We encourage you also have conversations about how you might integrate this into your curriculum and/or support your students.
If you have questions, please call me over while you are working on the activity.
Also, you may find me interrupting to provide further explanation as you work.

4. Student Handouts Quick Guide Safety Student Instructions
DISTRIBUTE 1 KIT and 1 STUDENT INSTRUCTIONS to EACH PER PAIR OF TEACHERS
Every kit comes with a sheet with a colored quick guide and safety instructions. Teachers should be keep this in the kit if they are refilling it.
Each kit typically come with ONE student instruction handout.
Teachers may make additional copies if their students are working in teams.
For today, you will be working in teams of 2.
One of you should use the student instructions in the bag. The other person should use the additional handout that we have provided.
Turn to this page

5. Part 1: A Family Disease
Jenny’s grandmother died of Huntington’s disease. Her parents never talked much about her grandmother’s illness. It was like a “family secret” that nobody wanted to talk about.
Now that Jenny is 18 years old, her mother wants her to see a doctor so she can get a genetic test for Huntington’s disease. Jenny doesn’t understand why her mother insists that she get the genetic test.
Jenny is very worried. She did not realize that she might get Huntington’s (HD) disease from her grandmother. She wonders how she could get HD when her parents don’t have any of the symptoms that her grandmother had.
Jenny did a bit of research on the Internet. Here is what she found out about Huntington’s disease.
The Genetic Testing for Huntington’s disease activity begins with a case study about a young woman with a family history of HD.
I would suggest reading this aloud to the class.
Would someone please read the introduction aloud.

6. Huntington’s Disease
Huntington's disease (HD) is an inherited disease that gradually destroys cells in certain areas of the brain. The loss of brain cells causes symptoms that include uncontrolled movements, loss of intellectual ability, and emotional disturbance.
HD is an inherited disease caused by a defective dominant gene that may be passed from parent to child. A person who inherits one HD gene will eventually develop the symptoms of Huntington’s disease. The symptoms of the disease typically begin at about age 40, but this varies from individual to individual.
The illness is progressive (gets worse with time). Some early symptoms of HD are mood swings, depression, irritability; along with trouble driving, learning new things, remembering facts, or making decisions. As the disease progresses, patients develop uncontrolled body movements that become progressively worse.
At this time, there is no cure for HD. Physicians can prescribe medications to help control the emotional and movement problems associated with HD. These medications have side effects and do not slow or stop the progression of the disease. Persons with HD usually live about 20 years after first showing symptoms.
A genetic test for the HD gene, along with a complete medical history and other medical tests, helps physicians diagnose HD. The genetic test may also be used to determine if a person with a family history of HD has inherited the dominant gene and is likely to develop the symptoms of HD later in life.
Note that we provide a bit of information about HD so that internet research is not essential.

7. Huntington’s Disease: Hope Through Research
Learn more about Huntington’s disease and genetic testing by visiting the following websites:
Huntington’s Disease: Hope Through Research
Your Genes Your Health: Huntington’s Disease
Be sure to click on the headings in the bar on the left!
The Huntington’s Disease Outreach Project for Education
Be sure to click on the bars at the top of the page!
If your students have computer access, here are some resources that students can use to learn more about Huntington’s disease.
With my classes, I would assign different students to explore each of these sites and then report out on the one interesting thing they learned about HD.
I particularly like the Your Genes Your Health site!

8. Please take 5 minutes to skim the Part 1 questions and then answer questions 5 and 6.
5. Many people with a family history of Huntington’s disease spend years thinking about whether or not to get the genetic test. Would you want to have a gene test that told you whether or not you had the gene for Huntington’s disease? Explain why or why not.
6. If you were Jenny, list three questions you would have about Huntington’s disease and genetic testing?
Please take 5 minutes to skim the information HD and answer the questions for Part 1 on page 2.
Work with your partner to answer questions 5 and 6.

9. Part 2: Jenny’s Chances
The genetic counselor tells Jenny that she can’t inherit the gene “H” for Huntington’s disease unless her father inherited an “H” gene from his mother. So, Jenny’s first question is “What is the chance that my Dad got the Huntington’s disease gene from my grandmother?” To answer her question, the genetic counselor hands Jenny two bags…….
Read the case aloud—stop at the data table. This is a long reading so break it up into smaller parts that are read by different people.
Ask participants to use the materials in the blue and red bags to complete pages 5 and 6.

10. Part 2: Jenny’s Chances
The black beads represent eggs or sperm that carry
the defective “H” gene that causes Huntington’s
disease.
The clear beads represent eggs that carry the
normal “h” gene.
Take the red and blue bag out of the kit. Discuss the red bag contents—black = gene for HD clear = normal gene
The grandfather does not have HD. What beads would you expect in the blue bag that represents the grandfather?
The grandmother has HD. What beads would you expect in the red bag that represents the grandmother?
Please take 5 minutes to complete the instructions on PAGE 6.
Discuss middle school vs high school and need to review information from middle school.

11. Please take 5 minutes to: Use the instructions on Page 6 and
Part 2: Jenny’s Chances
Please take 5 minutes to:
Use the instructions on Page 6 and
complete the data table on page 5.
Answer questions 9 and 10 on page 7.
Work with your partner to follow the instructions on the slide.

12. Part 3: Jenny’s Family History
Jenny’s father refuses to be tested to see if he has the dominant gene that causes Huntington’s disease. Jenny wonders if she should get the genetic test. She also wonders if her brother (Jeremy) or other members of her family should consider getting tested to see if they have the defective (H) gene.
The genetic counselor asked questions about Jenny’s family and recorded the information to create a pedigree chart.
Part 3 introduces students to the use of pedigrees to record family history.
No prior instruction on pedigree analysis is needed for this section. The questions are organized to provides scaffolding for analyzing the pedigree.

13. Please take 5 minutes to work with your partner to answer the questions on pages 9 and 10.

14. Part 4: Jenny’s Choices
Jenny thought that the genetic counselor would tell her to get the genetic test. But, the genetic counselor explained that genetic counselors don’t tell people what to do. They are trained to help people think about how getting tested, or not getting tested, might affect their future and their family.
The genetic counselor explains that it is important that Jenny NOT rush into getting a genetic test! Before Jenny makes a decision, she needs to understand what kinds of choices she has and what the consequences of these choices might be. Jenny should understand why some people decide to have genetic testing done and why other people decide to NOT get a genetic test.
The genetic counselor encourages Jenny to talk with her father and her brother (Jeremy) about genetic testing. Here’s is Jenny’s conversation with Dad and Jeremy.
We usually do not have time to do this activity in class. Part 4 is optional. But if you would like to encourage students to think about the benefits and risks of genetic testing.
The choice to be tested or not be tested is a difficult one with ethical issues.
Students will read a script for a conversation involving Jenny, Dad, and Jeremy.
As they read the script, they should underline/highlight reasons for getting genetic tests in one color and reasons for not getting genetic tests in a second color. If working in pairs, one student could do the FOR GETTING and another student could do the FOR NOT

15. 2. On the chart on the next page, make a list of the benefits and the
risks of getting a genetic test for the gene that causes Huntington’s
disease.
3. Not all benefits and risks are equally important to some people. On
your chart:
Put an “X” in front of the one benefit and one risk that are very
important to you.
Put an “O” in front of one benefit and one risk that are not important
to you.
4. Do you think the benefits of genetic testing outweigh (are more
important than) the risks of genetic testing? Explain why or why not.
Students then identify the benefits and risks associated with genetic testing.
Many of my students felt that to analyze these it was a simple matter of counting the benefits and risks
To help them understand that some are more important to individuals than others, they are asked to put X for ones that important and 0 for not important.
Consider having students share with class which they felt were very important.
Ask students to read their answers to question 4.

16. Part 5: The Huntington Gene and the Genetic Test
Part 5 introduces students to molecular genetics—the differences between the HD gene and a normal gene.
Please read the information in the box and answer the question at the bottom of page 16.
Consider using this as an opportunity to elaborate on the relationship between chromosomes and genes. And to discuss the fact that different genes may have different DNA codes.
Note that we have not used the word allele. You might want to introduce that concept with more advanced students.
Which is longer, a normal Huntington gene (h) or a mutant (H) Huntington gene that causes Huntington’s disease?

17. Students are also introduced to the PCR process (polymerase chain reaction) as a way of copying DNA. Consider using this as an opportunity to elaborate on the PCR process.
Please take a minute or two use the bags of PCR blue copies to answer the question 3 on page 17.
3. Which person (A or B) do you think has the gene for Huntington’s disease? Explain how you could tell.

18. 5. Which lane (1, 2 or 3) on the gel diagram on the previous page:
Contains only long DNA pieces? ________
Contains DNA from a person who has both H and genes? ______
Contains DNA from a person who does not have genes for Huntington’s disease? ________
Students are also introduced to the gel electrophoresis process. Consider using this as an opportunity to elaborate on the gel electrophoresis process and the fact that electrophoresis separates DNA on the basis of size.
Please answer questions 4 and 5 on page 18 and 19.

19. Jenny, Jeremy, and their father have decided to undergo genetic testing for Huntington’s disease. A laboratory technician has collected DNA and copied Huntington gene (DNA) samples from Jeremy, Jenny, and Dad. These samples were placed into wells on a gel and the electricity was turned on so that the gene copies moved through the gel.
Read information in the box aloud.
Take 5 minutes to follow the instructions on pages 19 and 20.

20. complete the instructions on page 19
Take 5 minutes to:
complete the instructions on page 19
complete the lab report on page 20
Take 5 minutes to complete the instructions on page 19 and complete the lab report on page 20.

21. Teacher Information MSDS Key Safety Quick Guide
One copy of the Teacher Information is provided when you purchase the kits.
The teacher information includes: Summary, Core Concepts, Kit Contains, Teacher Provides, Time Required, Hints for Reusing, and information of refill kit contents.
We also sell refills so that original kit contents can be reused.
MSDS
Key
Safety
Quick Guide

22. www.sciencetakeout.com Purchase kits from
The kit you used today is available from Science Take-Out as a completely assembled student kit.
Please explore the website to learn about other STO kits.
You can download the complete teacher instructions so that you can see what you are buying.

23. Individual Assembled Kits Fully assembled individual kits
You have a brochure that includes information on other Science Take-Out kits and a price list. Visit the Science Take-Out website to get further information for each kit.
At the website, you can download the teacher information for each kit to help you decide which kits you would like to purchase.
Science Take-Out kits are available as:
Individual Assembled Kits like the kits you used in this workshop
Unassembled Packs that contain all supplies needed to make 10 kits
Refill Packs that contain supplies needed to refill the consumables for 10 kits
Individual Assembled Kits Fully assembled individual kits
Unassembled Packs All supplies needed to make 10 kits
Refill Packs All supplies needed to refill 10 kits

24. Help us make new Science Take-Out kits teacher and student friendly.
Become Involved
as a Field Test Teacher
Help us make new Science Take-Out kits teacher and student friendly.
Indicate this on your card. Science Take-Out will contact you with further information
Science Take-Out has received an NIH Small Business grant. Support from this grant will allow us to field test Science Take-Out kits
If you would like to be a field test teacher, indicate this by circling yes on your participant card. We will add you to our list for field test teacher recruitment. 24 24

25. Become Involved as a Workshop Presenter
Present a workshop to introduce colleagues to Science Take-Out kits
Visit the Science Take-Out website for further information
Science Take-Out has received an NIH Small Business grant. Support from this grant will allow us to field test Science Take-Out kits
If you would like to be a field test teacher, indicate this by circling yes on your participant card. We will add you to our list for field test teacher recruitment. 25 25

26. Thanks for being a GREAT group!!!
Encourage teachers to write comments on the back of the participant survey card.
Please remember to collect participant feedback cards!!
Please turn in your participant card
before you leave.