Many people are aware of research that tests new drugs or different medical procedures
with humans, but there are other kinds of research too.
The HHS Office for Human Research Protections, or OHRP, created this video to give you information
about participating in research that studies human behavior and social interaction.
Research that studies what people do and how they interact with each other is broadly referred
to as social and behavioral research.
This research covers many areas of human life, including, for example, economics, advertising,
psychology, education, and politics.
Some of this research may only involve asking people to answer survey or interview questions,
reviewing people’s records, or observing people and taking notes about their behavior.
Other studies may include interventions.
For example, when researchers ask people to do something on a computer or in a laboratory
setting, and then record how people react.
Social and behavioral research also includes the study of human health, how behavior can
affect people’s health, and other factors related to healthcare.
This research can help scientists understand human behavior, so they can develop ways to
help people become healthier, by looking at things like:
Whether smartphone notifications help people remember to take their medicine;
Whether short exercise sessions can reduce the side effects of chemotherapy;
What is the most effective way to help people quit smoking?
Or, What behavioral strategies help people better
cope with chronic pain?
Not only can the results of these studies help individual people improve their health
and well-being, it can also help policy makers make good decisions about public health programs.
Participating in social and behavioral studies may involve different types of risk.
The most common risk is that information that people would rather keep private is unintentionally
disclosed.
Researchers collecting such information can include safeguards to try to keep that information
confidential, so that only the researchers know who gave them that information.
Another kind of risk of some social and behavioral studies is that researchers might ask questions
that could be upsetting to some people or remind them of bad things that have happened
to them.
Also, some social and behavioral research may pose physical risks too, although this
is less frequent.
Let’s look at some examples:
College students who are interviewed for a study about illegal drug use on campus run
the risk of getting in trouble if their answers are released to school authorities or law
enforcement.
This study presents a privacy risk to the college students that participate in it.
A study that asks survivors of domestic violence their experience living with the abusers might
bring up traumatic memories that could be emotionally very upsetting.
Lastly, a study to see whether yoga before bed helps people with insomnia fall asleep
faster, may involve the risk of physical injury if the people who participate don’t know
how to do yoga correctly.
There are many ways that researchers can protect participants from these risks.
For example, if researchers are asking sensitive questions in a face-to-face interview, they
can conduct the interview in a private location where no one can overhear the answers.
Researchers can also record the information with devices that are password protected,
so the information is only accessible to those in the research team.
For some studies, there is no need to even write down the person’s name or any information
that could identify the person.
For other studies when researchers still need to be able to identify participants, they
can use a code or ID number rather than people’s names.
When researchers ask you to participate in a research study, they should tell you how
they plan to keep your information confidential.
Ask if anyone besides the researcher will have access to your information and, if so,
who and for what purpose.
The study team is responsible for answering all of your questions.
Just as with biomedical research, HHS-funded social and behavioral studies are generally
required to follow federal regulations that protect research volunteers.
This often includes having an institutional review board (or IRB) review and approve the
research to make sure risks are minimized, that the study is carefully explained to people
asked to participate, and that protections are in place.
Sometimes, studies are considered to be so low risk that IRB review is not required.
Finally, don’t forget that participating in a research study is your decision.
Participating can help find new knowledge, but it is also OK to say you don’t want
to participate.
And, if you first decide to participate and then change your mind later, that’s OK,
too.
Even after the study has started, your continued participation is completely voluntary.
You can always decide to stop being in the study without any sort of penalty.
And if you agree to complete a survey for a study and there are some questions that
you don’t want to answer, you don’t have to answer them.
We hope this video has answered some of your basic questions about social and behavioral
research and has given you some things to think about.
OHRP has also created a 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 view this list of questions and see other information about research participation,
check out the OHRP website at www.hhs.gov/about-research-participation