Frequently Asked Questions for Those Considering Participating in Research

Why volunteer for a study?   There are many reasons to participate in research.                            You may want to: help find a cure for an illness help other people who are sick help find ways to provide better care help scientists find out more about how the human body and mind work take part in a study that is trying to find a better treatment for a condition that you have   If you decide to take part in a research study, you do so as a VOLUNTEER.  That means YOU decide whether or not you will take part.  If you choose to do so, you have many important rights.

Are there benefits to being in a research study?

There may or may not be a direct benefit to you if you take part in a research study.  For example, your health or a health condition you have may get better as a result of your participation in the study, it may stay the same, or it may even get worse.  No one can completely predict the outcome of a research study or how it might affect you.  The study may not help you personally, but your participation in the study may result in information that will help others in the future. 

Are there risks or side effects in a research study?

Sometimes research procedures and drugs may cause discomfort and/or side effects.  The questions being asked could make you uncomfortable.  The risks and side effects of the research may not be known completely when you start the study.  The research staff will discuss with you known possible risks so you can decide if you want to volunteer.  Additionally, the research staff will tell you about any new risks that they learn about during the study for as long as you participate in the study. 

Who will see my records?

Like your medical record, the information in your research record will be confidential.  Information will be given only to the researchers who carry out the study or to those who make sure that the study is safe and carried out in the way it was planned.  The groups of individuals who might look at your records are the research staff, the Institutional Review Board (IRB), the company or group funding the study, and various government oversight agencies.  It is important for these groups to be able to look at your records so they can ensure that the study is conducted using acceptable research practices. 

What questions should I ask before I agree to take part in a research study?

Before you decide to volunteer to take part in a research study, you need to know as much as possible about the study.  If there are any issues that concern you, be sure to ask questions.  You might want to write your questions down in advance or click here for a list of questions you can print out and take with you.  Not every question will apply to every study.

What if I decide not to participate in a research study?

Participation in research studies is voluntary and you always have the right to say "no."  Your decision will NOT affect your VA health care or benefits and you can change your mind and leave a research study at any time without losing any of your VA health care or benefits.