TABLE 2.
Moderators guide for patient genomic focus groups.
| We want to learn what people think about participating in medical research studies and allow their tissue to be sent to biobanks. |
| Today we want to learn what you think about these new possibilities for more personalized health care treatments that can be learned from research involving use of a wide variety of people’s blood or body tissue. |
| • We are not trying to enroll you in a genomics research study – we just want your thoughts about these new kinds of studies. |
| • We are interested in your thoughts and experiences about participating in medical research studies |
| • We want to hear your thinking, questions, concerns, beliefs and experiences. |
| (1) Have you ever been in a research study? |
| a. Probe: How did you find out about it? Did a doctor or nurse ask you if you wanted to participate? |
| b. Have you ever been asked to be in one? |
| (2) Have you ever heard of genomics research? If yes: |
| a. What have you heard? |
| b. Would you like to know more about what genomics means and what it could mean for you? |
| (3) Have you ever heard of biobanking? |
| a. What does this mean to you? |
| b. What does taking a sample of your tissue or blood mean to you? |
| c. What questions do you have about researchers using your tissue or blood and putting them in a biobank? |
| (4) What questions/concerns do you have participating about this kind of research? |
| a. What would you want to know before you agreed to participate in a study that used your cells / tissue? |
| (5) What information would you like about studies that use people’s genes or tissue samples? |
| (6) How do you think people need to get this information? |
| a. Probe: doctor/nurse pamphlet, internet |
| (7) What does written information need to say? |
| a. Probe: What terms are most useful or helpful or confusing? |
| (8) Where do you get health information? |
| a. Probe: Doctor’s office, internet, health magazines, television |
| (9) Would you be interested in participating in biobanking? |
| a. Probe: What would be barriers to participating? What would your concerns be? |
| (10) Would you be interested in participating in a clinical trial? |
| a. Probe: What studies would you be most interested in – diseases that affect your family or yourself? |