Hello!
The HHS Office for Human Research Protections, or OHRP, made this video to help you learn
more about protecting your privacy if you participate in research.
Why Do You Need to Know About Privacy?
Data security breaches have impacted millions of people.
These breaches include events in which people’s private information is disclosed without their permission.
Sometimes this happens by accident, and sometimes it is the result of hacking or other criminal activity.
It can happen to information held by your bank, internet provider, or hospital system
… and it can happen in research too.
If you’re thinking about volunteering for a research study, you probably have questions
about what being in the study would mean for you.
You should talk to the researchers about how they plan to use and protect the information
they collect about you.
This is important because many research studies collect information that you’d normally
want to keep private.
Private information is information about you that you expect others don’t normally have
access to.
Generally, your health information and medical records are private, and access to them is
protected by laws and regulations.
Also, you may want to keep something private because the information could be embarrassing–
for example, that you like to binge on unhealthy snacks.
In addition, some information may be sensitive.
This is information that could put you at some risk of harm if other people were to
learn about it.
For example, if you have a history of illegal drug use this would be sensitive information
because it could cause you legal trouble or endanger your job.
As a research volunteer, you may be willing to share certain information with researchers
that you still don’t want other people to know.
The research team has a responsibility to protect your information, and they do this
by following procedures to keep your information confidential.
If you are thinking about joining a research study, you can ask researchers how they plan
to protect your privacy and keep your information confidential.
Researchers should have a plan to protect your information when they collect and use
it for the research study, when they store it, and if they share it with other researchers.
Let’s think about this a little more.
Protection When Collecting Your Information First, researchers can protect your privacy
by collecting your information in a private setting such as a private office, a medical
exam room, or your home.
This is even more important if researchers plan to ask you sensitive questions.
Another way researchers protect your privacy is to collect your information anonymously.
For example, they may ask you to answer questions on a computer or tablet without giving information
that can identify you, like your name or address.
This way, no one would know which answers belong to you.
You can help protect your own information too.
For example, if you are answering research questions on a computer, especially if you’re
using a public computer like at the library, check to make sure that no one can see what
you are doing.
You can also ask a librarian about secure settings on the computer.
Make sure you log out and close the computer program when you’re done.
Protection When Storing Your Information
Research information is commonly stored on computer systems
protected by passwords, encryption, or other security measures.
Passwords limit who can access the information.
Encryption controls who can see your information by making it unreadable to people without
permission to see it.
Another common way researchers protect your information is by separating the information
that can identify you from the research information you gave them.
They then label your research information with a code or reference number.
That way, researchers won’t know what information is yours.
In some studies, researchers might keep a list that links your identity to the code
so they can contact you again if needed.
In these cases, they protect the list by limiting access and keeping it separate from the research
information.
Protection When Sharing Your Information Beyond the Research Team
Information collected for one research study can be very useful for other research.
For example, information collected to study the spread of COVID-19 could later be used
by researchers to study which patients would be most likely to end up in the hospital.
When researchers ask for your consent to participate in a research study, they should also tell
you if they plan to use or share your information for future studies.
If the information they share can identify you, they generally ask for your permission
before they share it.
You have a right to know how researchers are going to protect your privacy.
If it is not clear, do not be afraid to ask.
We hope this video helped you learn more about privacy during research participation.
OHRP has created a website called About Research Participation to help you learn more about
participating in research.
The website has many helpful resources including videos that cover topics such as informed
consent for research, and research with medical records and samples from medical care.
We encourage you to check out the OHRP website at www.hhs.gov/about-research-participation
to find other related resources.