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

August 13, 1998

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

What Is a Research Study?

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.

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.

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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.hhs.gov/policy/ and http://www.bioethics.gov/.


1. What Is the Study About?
  • Why are you doing this study?

  • Why do you want to study me or people like me? Who else is being studied?

  • What do you want to get out of this study?

  • What will you do with the results?

  • Have you or others done this type of study ever before? Around here? What did you learn?
2. Who Put This Study Together?
  • Who is running or in charge of this study?

  • Whose idea was this study?

  • How were people like me part of putting it together?

  • Who are the researchers? Are they doctors or scientists? Who do they work for?

  • Have they done studies like this before?

  • Is the government part of this study? Who else is a part of this study?

  • Who is paying for this study?

  • Who will make money from the results of this study?
3. How Can People Like Me Share Their Ideas as You Do This Study?
  • How will the study be explained in my community?

  • Who of people like me will look at this study before it starts?

  • Who of people like me are you talking to as you do this study? A Community Advisory Board?

  • Who from the study can I go to with ideas, questions, or complaints?

  • How will people like me find out about how the study is going?
4. Who Is Going to Be in This Study?
  • What kinds of people are you looking for? Why?

  • Are you trying to get minorities in this study?

  • Are you including people less than 18 years old?

  • How are you finding people for this study?

  • Is transportation and/or daycare provided for people in this study?

  • Do I need to sign to participate?

  • Will you answer all of my questions before I sign the consent form?

  • 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?
  • What are the benefits?

  • Is payment involved? How will I be paid?

  • Will I get free health care or other services if I participate? For how long?

  • Will I get general health care and/or psychological care if I participate? For how long?
6. How Will I Be Protected from Harm?
  • Do I stand a chance of being harmed in this study? In the future?

  • Does the study protect me from all types of harm?

  • If I get harmed, who will take care of me? Who is responsible?

  • If I get harmed in any way, will I get all needed treatment? Who pays for treatment?
7. How Will My Privacy Be Protected?
  • Who is going to see the information I give?

  • Will my name be used with the information?

  • What happens to the information I gave if I quit the study?

  • Is there a written guarantee of privacy?
8. What Do I Have to Do in This Study?
  • When did you start this study? How long will it last?

  • How much of this study have you already done?

  • Have there been any problems so far?

  • Will I get treated the same as everyone else?

  • 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?
  • What will happen to the information people give? How will it be kept?

  • What are you going to do with the results of the study?

  • How will the public learn about the results? Will results be in places where the public can see them?

  • Are you going to send me a copy of the results? When?

  • 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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This article was provided by U.S. Centers for Disease Control and Prevention. Visit the CDC's website to find out more about their activities, publications and services.
 

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