Table 1.
Interview Guide | |
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Introduction to questions: Finally, I would like to ask you about your interest in receiving information about disease risks for you or your family members | |
Question 1: | Some people are interested in receiving information the disease that they might get in the future from a test of their genes. Would you be interested in receiving this type of testing to learn more about your risk of getting diseases like cancer or Alzheimer’s? Why (why not)? |
Question 2: | If your genes are tested, this information also gives you information about the risks that your family members may get curtain diseases. Would you share the results you get from genetic testing with your family members? Why (why not)? |
Introduction to questions: Now I would like to ask you a few questions about any experiences that you or your family members may have had with some specific types of genetic tests. If you have not been pregnant or had a partner who was pregnant, you may not have thought a lot about these tests, but I would still like to hear your thoughts | |
Question 3: |
During early pregnancy some women have prenatal screening done. What are your thoughts about prenatal screening? [If they have not heard about prenatal screening please provide this information: Prenatal screening tests if an unborn baby has an increased risk for types of genetic or physical problems. This is usually done with a blood sample from a mother and an ultrasound] Probes: → Why do you think some women would want to have this done? → Why do you think some women wouldn’t want to have this done? → How do you think the information might be useful? |
Question 4: |
All babies receive newborn screening right after birth. This is a state mandated test, which means that everyone has it done. The reason for this screening is that when a baby is born and looks healthy, there may be other problems. If these problems are found within the first weeks of life, then medical treatment can prevent the baby from having problems in the future Probes: → Why do you think some parents would want to have newborn screening done? → Why do you think some parents would not want to have newborn screening done? |