Table 2.

Focus Group Guide.

1. What do you know about biobanking? Probe: What have you heard about it? Can you describe what it is? What do you think it is?

Read the following description: Biobanking is the process of collecting and storing specimens of human fluids (like blood) and tissues for research. The specimens are often used to develop or test a treatment for diseases such as cancer. Researchers use specimens from people with similar traits for their studies. (For example, they might use only blood samples that have been donated by Mexican American males, age 18-25, who have smoked for 10 years or more.) Having specimens from people of different races and ethnicities, different ages, and from men and women helps to ensure that the treatments and tests developed will be appropriate for everybody. There are not as many specimens from Hispanics as there are for other groups.

2. Has anyone ever asked to collect or store your blood or other human tissue for research? Clarify: The sample of blood or other human tissue was not taken by your doctor during a routine visit, but was stored to use in future research projects.

3. How do you feel about people having their blood and other tissue collected and stored for research? And why? If necessary, probe for attitudes: Ethical/moral/religious beliefs

4. How do you feel about the idea of you blood or tissue being stored for a long time?

5. Do you think you would be willing to have your blood or other human tissue collected and stored for research? Why or why not?

6. What things concern or worry you about having your blood or other tissue collected and stored for research? Probe: If they mention fear…What do you think makes collecting blood or other tissue scary? If necessary, probe for potential concerns: Fear, Misuse of blood/tissue, Loss of privacy, Mistrust of biobanks, Potential for future discrimination, Security of the data

7. What would make you less willing to have your blood or other tissue collected and stored for research? If necessary, probe for potential barriers: Lack of information, No direct benefit

8. What would make you more willing to have your blood or other tissue collected and stored for research? Probe: What things would make you think it is a good idea? If necessary, probe for potential facilitators: Provider recommendation, Word-of-mouth, Materials/information in English and Spanish, Bilingual staff, Staff from same racial/ethnic group, Financial incentives, Location and time of blood collection, Control over how blood is used and by whom

9. Do you think it is important for blood and other tissue to be collected for research? Why or why not?

10. What would be some good things about having your blood and other tissue collected and stored for research? If necessary, probe for potential benefits: Helping other people, Scientific progress, Receiving results from blood tests

11. If you have children, would you consent to having their blood collected and stored for research? Why or why not?

12. How do you think others in your community feel about collecting and storing blood and other tissue for research?

13. Is there anything we didn’t discuss about biobanking that you would like to tell us or think we should know?