Your Job:

Choose TWO diseases from the below tables (bonus points if you choose a third disease) to analyze and compare. You must choose which disease you would have EVERY child in the USA screened for at birth (just as PKU is currently).

You will then answer TWO questions EACH from the first 2 sections below (Choice of tests, Cost). For example, you could answer 1A, 1F, 2A, 2C for one disease and then another combination (or the same) for the second disease. You will then answer TWO questions EACH TOTAL for Rights and Personal and societal impacts (Ex. 3A, 3D, 4B, and 4E).

Type your responses in a Google Doc and share with me (cstaub@duplinschools.net) by the end of class. Feel free to use the internet to get more information about any of the below questions (citing the website you use!).

Disease 1 Disease 2

Question 1

Question 1

Question 2

Question 2

Question 3.

Question 3.

Question 4.

Question 4.

1. Choice of tests

A. What are the effects of each genetic disorder?

B. What treatment is currently available for each genetic disorder, and at what age does treatment begin?

C. Are tests currently available for each genetic disorder? If so, what are they?

D. Should tests be restricted only to those disorders that are treatable? Only those for which treatment early in life makes a difference? Why?

E. Based on demographics, how many people are likely to be affected by each genetic disorder?

F. How do demographics influence the choice of tests?

G. Should all newborn infants receive the same screening tests? Why or why not?

2. Costs

A. What is the cost per test and the total for screening?

B. Will early identification of persons with the genetic disorder lead to cost savings in treatment or care? Why or why not?

C. Who will pay for testing?Should citizens who do not have children help pay for newborn testing? Why or why not?

3. Rights

A. Is testing fair to a newborn child who cannot speak for his or her own rights? Why or why not?

B. Should parents be able to choose or refuse tests? Why or why not?

C. If the symptoms of a genetic disorder are not expected to appear until after a child reaches legal adulthood, should that disorder be included in a newborn testing program? What are the pros and cons?

D. Who has access to the test results? What happens to the blood samples after testing?Are laws needed to protect citizens’ or doctors’ rights? If so, what types of laws?

4. Personal and societal impacts

A. Will test information result in prejudice against certain individuals? If so, why? How might this be expressed?

B. Will testing (or lack of testing) be a source of distress for parents or newborns? If so, why?

C. Will test information make it difficult for an individual to obtain health insurance? Will a predisposition to a genetic disorder be considered a “pre-existing condition”?

D. How will early diagnosis of genetic disorders help or hurt society?

E. What are current policies in different states or countries?