Hello!
The federal Office for Human Research Protections, or OHRP, created these videos to help you
learn more about participating in research.
Deciding if you want to volunteer in research can be difficult, and that decision can
have important consequences.
To help you think it through, this video suggests questions you might want to ask the researchers,
and reminds you that your participation is voluntary.
There are many different types of research and the type of procedures done affect the
risks involved, if any.
The following questions might be helpful to consider when you meet with a researcher to
learn about volunteering for a study.
Perhaps the first questions you’ll want to ask are: what is the study about, and what
would you have to do as part of the research.
The researchers should be able to explain in a clear and easy-to-understand way why
they are doing the study, why you are being asked to participate, and what you should
expect.
You might also want to ask: How much time will it take?
Will there be any risks or unpleasant side effects?
Who will have access to your private information and how will it be protected?
If it is a medical study, how will this differ from your usual care?
Having a clear understanding of the study and any associated risks is critical to making
an informed decision.
Aside from understanding what the research involves, you should also find out whether
participating will help you personally; for example, whether participating might help
you with better monitoring of your disease.
Researchers are required to tell you about the risks and potential benefits.
Even if the main reason you want to volunteer is to help others, it’s still reasonable
to find out if taking part in the research may help you in some way.
But remember, if the research is finding out whether an intervention works, don’t assume
that you will benefit from the intervention by participating.
It is being studied precisely because the researchers don’t know if it works!
And if it’s an RCT, the randomized assignment might mean that you end up in the group that
doesn’t receive the study medication or intervention.
Another important question to ask the researcher is “what are the alternatives to participating
in the study?”
Would the same treatments or procedures be available to you if you choose not to participate?
How would joining the study change your treatment options?
Having the answers to these questions will help you weigh all of your options in light
of the study’s risks and potential benefits.
Some studies might compensate you for the time and inconvenience of participating.
For example, it may cover travel costs, or make up for lost wages.
Speaking of money, you should also ask whether taking part in the research will cost you
any money.
If the study requires certain medical procedures, will you have to pay for them, or if you have
insurance, will they be covered?
Will you have co-payments or deductibles?
And what happens if you are injured by taking part in the study, who would be responsible
for any resulting expenses?
It is better to know these answers up front, than to be surprised later.
Once you feel you have enough information to make your decision, the most important
thing to remember is that the decision to participate is yours alone.
And if you decide to participate now and change your mind later, that’s your choice too.
Even after the study has started, your continued participation remains completely voluntary.
You can always stop.
Hopefully this video answered some of your basic questions about research and gave you
some things to think about.
Deciding whether to participate in research can be tough.
Don’t be afraid to ask the research team for more information and talk with them about
your concerns.
It’s their job to give you the information you need.
OHRP has created a printable list of questions to consider when deciding whether to participate
in research.
You can print this list and take it with you when you meet with the research team.
It can help remind you of some of the questions you may want to ask.
To print this list of questions and see other information about research participation,
check out the OHRP website at
www.hhs.gov/about-research-participation