SUPPLEMENT 1

Georgetown-Lombardi

Biospecimen Focus Group Interview Guide Instrument

Focus group registration Introduction Ice breaker

1. Medical History (10 minutes):

Have you or a family member survived a serious illness such as cancer, stroke, or heart attack?

If yes, do you think that the medicines taken helped you/family member survive?

Do you or family members take medicines for illnesses like diabetes or high blood pressure?

If yes, do you think that the medicines help you/family member live a better life?

2. Knowledge and Perceptions (Research) (10 minutes)

How does a doctor know what the best medicine(s) for an illness is?

Who has heard the term clinical research?

Under what circumstances did you hear the term?

What is clinical research?

What is the role of clinical research in developing new medicines?

3. Knowledge and Perceptions (Treatment) (5 minutes)

Who has heard the term personalized medicine?

Where and when did you hear the term?

What is personalized medicine?

Does anyone have any thoughts on personalized medicine?

Important/not important

4. Knowledge and Perceptions (Biospecimens) (15 minutes)

Who has heard the term biospecimen?

Where and when did you hear the term?

What would you consider to be a biospecimen?

How are biospecimens collected?

How are biospecimens used in research?

Can a biospecimen be used to help diagnose an illness?

5. Willingness to Donate (5 minutes)

Would you be willing to donate a biospecimen?

If yes, under what circumstances?

If yes, what type of biospecimen would you be willing to donate (blood, tissue, saliva, urine etc.)?

6. Perceived Benefits to Donation (5 minutes)

What would be the benefit to you or family to donate biospecimans?

Do you think that storing biospecimans for future is important?, If yes, why?

7. Perceived Barriers to Biospecimen Donation (5 minutes)

What would make you uncomfortable about donating biospecimens?

Is this based on personal experience?

What can be done to make you more receptive to biospecimen donation?

8. Message Design (10 minutes)

If we were developing an educational campaign about the importance of biospecimen donation, who should we use to get the message to the people?

Where would you want to see or hear information about biospecimen donation (television, radio, internet, magazines, and newspapers)?

Would it be important if your personal physician shared information about biospecimen donation?

Would it be important to have brochures about biospecimen donation that you can discuss with family membersand friends?

Closing (15 minutes)

Do you have any other thoughts on biospecimen donation and how it may affect you and your family?

Thank you for participating. For your participation we would like to present you with a $25.00 gift card.

ID No.: ______

1. / Age: __ __
2. / Gender
  1. Male

  1. Female

3. / Zip Code: ______
4. / Ward: ___
5. / Race/Ethnicity
  1. African-American/Black

  1. White (non-Hispanic)

  1. Hispanic

  1. Other: ______

6. / Education
  1. < High School

  1. High School or GED

  1. Some College/University

  1. College/University

  1. Post Graduate

7. / Please circle those family members that have been diagnosed with Breast Cancer. (You may circle more than one. Please circle all that apply)
  1. Self

  1. Sister

  1. Mother

  1. Father/Brother

  1. Aunt

  1. Grandmother

  1. None

  1. Don’t Know

8. / Please circle those family members that have been diagnosed with Prostate Cancer. (You may circle more than one. Please circle all that apply)
  1. Self

  1. Brother

  1. Father

  1. Uncle

  1. Grandfather

  1. None

  1. Don’t Know

BIOSPECIMEN AWARENESS AND EDUCATION SURVEY

9. / Please select those items that you think are biospecimens. (You may select more than one answer.)
  1. Tissue

  1. Blood

  1. Urine

  1. Saliva

  1. Cheek Cells

  1. Tumors

  1. All of the above

  1. None of the above

10. / In the future, if you were asked to donate a biospecimen for research, would you consider doing so?
  1. I would definitely consider it.

  1. I might consider it.

  1. I probably would not consider it.

  1. I definitely would not consider it.

  1. Not sure.

11. / Which of the following would be the most important factors in determining whether you would donate biospecimens? (You may select more than one answer. Please select all that apply)
  1. How the biospecimen will be used

  1. Lack of knowledge

  1. Lack of health insurance

  1. Lack of transportation

  1. Distrust of the medical community

  1. Fear of discomfort from biospecimen collection

  1. Confidentiality concerns

  1. Fear of losing health insurance

12. / Have you ever heard the term ‘personalized medicine’ or ‘tailored medicine?’
  1. Yes

  1. No

Thank You!