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Taking Part in Research Studies:
What Questions Should You Ask?

What is a research study?

Image 1

A research study is a
way for finding answers to
difficult scientific or health
questions.

For example, scientists
may want to understand
more about how AIDS is
spread by asking people
about their activities in a
survey.


Another example is
when doctors might do a
research study to find out
whether a new medicine
helps people improve their
eyesight.


Image 2

In this pamphlet, you will find important questions you should ask of anyone who wants you or members of your family or community to be part of a research study.

For copies of this brochure: CDC National Prevention Information Network 1-800-458-5231

For general information on protection of humans involved in research studies, please write to: National Institutes of Health Office for Protection from Research Risks 6100 Executive Blvd, Rm 3D01 Rockville, MD 20892-7507

Web sites of interest: http://www.cdc.gov/nchstp/hiv_aids/dhap.htm (to download this brochure), http://www.hhs.gov/policy/, and http://www.bioethics.gov/


1. What is the study about?

bar Check  Why are you doing this study?
Check  Why do you want to study me or people like me? Who else is being studied?
Check  What do you want to get out of this study?
Check  What will you do with the results?
Check  Have you or others done this type of study ever before? Around here?
         What did you learn?


2. Who put this study together?

bar Check  Who is running or in charge of this study?
Check  Whose idea was this study?
Check  How were people like me part of putting it together?
Check  Who are the researchers? Are they doctors or scientists? Who do they work for?
Check  Have they done studies like this before?
Check  Is the government part of this study? Who else is a part of this study?
Check  Who is paying for this study?
Check  Who will make money from the results of this study?


3. How can people like me share their ideas as you do this study?

bar Check  How will the study be explained in my community?
Check  Who of people like me will look at this study before it starts?
Check  Who of people like me are you talking to as you do this study?
        A Community Advisory Board?
Check  Who from the study can I go to with ideas, questions, or complaints?
Check  How will people like me find out about how the study is going?


4. Who is going to be in this study?

bar Check  What kinds of people are you looking for? Why?
Check  Are you trying to get minorities in this study?
Check  Are you including people less than 18 years old?
Check  How are you finding people for this study?
Check  Is transportation and/or daycare provided for people in this study?
Check  Do I need to sign to participate?
Check  Will you answer all of my questions before I sign the consent form?
Check  Can I quit the study after signing the consent form?
        If I quit the study, will anything happen to me?


5. What will I get out of this study?

bar Check  What are the benefits?
Check  Is payment involved? How will I be paid?
Check  Will I get free health care or other services if I participate? For how long?
Check  Will I get general health care and/or psychological care if I participate?
        For how long?


6. How will I be protected from harm?

bar Check  Do I stand a chance of being harmed in this study? In the future?
Check  Does the study protect me from all types of harm?
Check  If I get harmed, who will take care of me? Who is responsible?
Check  If I get harmed in any way, will I get all needed treatment?
        Who pays for treatment?


7. How will my privacy be protected?

bar Check  Who is going to see the information I give?
Check  Will my name be used with the information?
Check  What happens to the information I gave if I quit the study?
Check  Is there a written guarantee of privacy?


8. What do I have to do in this study?

bar Check  When did you start this study? How long will it last?
Check  How much of this study have you already done?
Check  Have there been any problems so far?
Check  Will I get treated the same as everyone else?
Check  What kinds of different treatments are offered in this study?
        Is there a real and a fake treatment?


9. What will be left behind after the study is over?

bar Check  What will happen to the information people give? How will it be kept?
Check  What are you going to do with the results of the study?
Check  How will the public learn about the results?
        Will results be in places where the public can see them?
Check  Are you going to send me a copy of the results? When?
Check  What other studies are you planning to do here?




Produced by the Project LinCS (Linking Communities and Scientists), Community Advisory Board (Durham, NC), and Investigators (University of North Carolina Center for Health Promotion and Disease Prevention) in cooperation with the Centers for Disease Control and Prevention, Atlanta, GA

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Last Updated: August 13, 1998
Centers for Disease Control & Prevention
National Center for HIV, STD, and TB Prevention
Divisions of HIV/AIDS Prevention
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