La visión de la garantía y la necesidad real en el colectivo de

Procedures:

1. The project staff (moderator and facilitator) will greet individuals as they enter the room and check off their name on the attendance sheet.

2. Project staff will give each participant a consent form and survey

3. The moderator will provide an explanation of the purpose of the focus group meeting and introduce him/herself as well as the co-moderator.

Thank you for being here. My name is _____ and today I will be leading our focus group discussion. A focus group is a meeting where questions are asked to a group of people in order understand a specific topic. The purpose of this focus group is for me to listen to your thoughts and experiences about genetics and heart health and suggestions for how we can make our study better.

You should feel free to make any sort of comments – positive or negative – about what we are talking about today. There are no right or wrong answers

4. The moderator will review each of the key sections of the consent form.

As you came in today, you were each given a consent form. Let’s go over this form now and make sure there are no questions.

Important points to note:

• Purpose of the study and what participants are being asked to do • Length of participation

• Risks, benefits and compensation • Protection of privacy

∗ Be sure to note that discussions will be recorded if all participants are

willing. Recording can be stopped at any time at any participant’s request.

• Who to call with questions

Are there any questions? If you are willing to continue, please sign this form and return it to one of the project staff.

5. The moderator will review the ground rules.

We want everyone to have the chance to share their opinions or experiences. We want this to be a very open discussion. There are just a few ground rules we want to go over that will help everything go more smoothly:

1. Talk one at a time.

2. Be respectful of others. You don’t have to agree with what’s said.

3. Keep today’s discussions private. What is said in this room should stay here. 4. Remember that you can choose a ‘fake’ name for this discussion.

5. Does anyone have any questions?

(START THE RECORDER)

Ice-breaker: Let’s begin by going around the table and have each person say their first name

(fake or real) and then tell the group your favorite place in Kinston.

Section 1: Perception of Genomics

One of the terms some people may use when they talk about genetics and health is

“GENOMICS.”

1. How many of you have ever heard of this term?

2. (Moderator: Look for how many people raise their hands). It looks like we have ________ people who have raised their hand.

3. This may be a term that you may or may not have heard before. Now, if someone were to say the word “GENOMICS” to you, tell me what comes to your mind. What have you heard about it? LIST

For the rest of this discussion, I am going to share with you what we mean by Genomics so that we are all on the same page:

Genomics is a term that describes the study ofall of a person’s genes (their genome) including how genes interact with each other and with the person’s environment. This is different from genetics which is the study of a single gene in isolation. Think of genomics as a garden and genetics like a plant in your garden. If the plant is not flowering, you could study just the plant itself (genetics) or look at the surrounding to see if it is too crowded or there is not enough sun (genomics).

Genomics is………

1. What might be some benefits or positive things about genomics?

2. What might be some drawbacks or negative things about genomics?

3. On a scale of 1-10, (1=not at all important and 10=completely important), How important is genomics to your health?

PROBE: Do you feel pre-determined or destined to get certain diseases like heart disease?

PROBE: What factors might affect whether or not you get heart disease?

4. What changes, if any, would you make in your lifestyle if you knew you had inherited traits that increase your chances of getting heart disease?

Section 2: Safety and Security Concerns

1. If you were asked to participate in research that involves using your genetic make-up to develop better ways to detect, treat, and prevent things like heart disease, would you participate?

2. What things would you need to consider or would want to know about the study?

3. What are some things that would be helpful for you in making this decision?

4. How comfortable are you with the idea of medical researchers having your genetic information?

5. What safeguards or protections do you feel are necessary and appropriate for someone to participate in this kind of research study?

Section 3. Promotion

1. How should this study be advertised to the community?

2. If we put you in charge of getting the word out to others about this study, what would you do to make sure everyone knows about this?

PROBE: What would you say?

PROBE: Where would you put materials and messages?

Section: Closing

Based on our discussion today, what do you feel are two main things I should take back to our team?

Is there anything else you feel we did not cover that I need to know?

We would like to thank you for your time. Your answers have greatly helped us. If you have any questions about what we have done today, don’t hesitate to call the phone number on the bottom of the consent form. We will be happy to talk with you about the study.

APPENDIX4.4:DEMOGRAPHICSSURVEY