Information for Research Participants

This page contains resources for individuals to learn about participating in research and making informed decisions. Before a Penn researcher may start a research study with humans, the proposed research plan must first be reviewed and approved by a special committee called the Institutional Review Board (IRB). The purpose of the IRB is to ensure that the rights and welfare of people participating in research studies are protected. The Penn IRB is made up of Penn faculty and staff as well as unaffiliated members, who are either scientists or non-scientists. Watch the video below for more information about IRBs.

What is Research?

 

According to the U.S. Department of Health and Human Services (DHHS) definition at §46.102, research is “a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge.” Activities and projects that meet this definition are considered to be research.

 

People participate in research for a variety of reasons such as helping others or contributing to scientific progress in improving a health or societal condition. If approached to participate in a research study, you should think carefully about your decision. Click below for an educational video on informed consent and what information will help you decide whether to participate.

Informed Consent Questions to Ask Common Terms

Types of Research Conducted by Penn Researchers

Penn researchers conduct both biomedical and social behavioral research. Click below to view educational videos that explain these different types of research.

Biomedical Research

Biomedical research is varied and includes clinical trials with drugs or devices. It may also involve the collection of blood or tissues. Click below for educational videos on biomedical research.
What is Medical Research? How is Medical Research Different from Medical Care?

Behavioral Research

Social Behavioral research examines and tries to understand individual and social behavior. Click below for an educational video on Social Behavioral research.
What is social-behavioral research?

Where can I find research studies to participate in?

 

There are a number of resources for finding research studies to participate in. 

  • Visit Penn’s Office of Clinical Research (OCR) for information on clinical research at Penn. OCR works closely with faculty who are conducting clinical research at Penn and can help you identify research participation opportunities.
  • Research study advertisements can be found in public settings in the form of flyers, television/radio ads, and newspaper ads.
  • Referral from your health care provider
  • Special interest or advocacy groups
Office of Clinical Research (OCR) NIH Clinical trials website

Who Can Penn Research Participants Contact For Help?

 

If you are already participating in a research study, you are encouraged to communicate with the research team first, especially if you are experiencing medical problems. You should have received a copy of a consent form or other document with investigator and emergency contact information. You may contact the University of Pennsylvania’s Institutional Review Board (IRB) at the number below for help if:

 

  • you want general information or have general questions about research or your rights;
  • you wish to discuss a complaint, suggestion, or concern and you do not feel comfortable talking with the research team;
  • you want advice on how to communicate with the research team;
  • you have communicated with the research team, and they have not been able to help you.

 

Research Participant Hotline:
(215) 898-2614

 

 

Who do I contact if I have questions about my medical privacy during a research study?

 

Penn Medicine patients who have questions regarding their privacy should contact the Penn Medicine Privacy Office at 215-573-4492 or the email linked below. Penn Medicine patients who want to opt out of research or have questions regarding Research Contact Opt-Out should contact the Office of Clinical Research at 215-662-4484 or the email linked below.

Penn Medicine Privacy Office of Clinical Research

What are my Rights as a Research Participant?

  1. To have enough time to decide whether or not to be in the research study, to ask question, and to make that decision without any pressure from the people who are conducting the research.

  2. To refuse to be in the study at all, and to stop participating at any time after you begin the study.

  3. To receive a copy of the consent form 

  4. To be told what the study is trying to find out, what will happen to you, and what you will be asked to do if you are in the study.

  5. To be told about the reasonably foreseeable risks of being in the study.

  6. To be told about the possible benefits of being in the study.

  7. To be told whether there are any costs associated with being in the study and whether you will be compensated for participating in the study.

  8. To be told who will have access to information collected about you, and how your confidentiality will be protected.

  9. To be told whom to contact with questions about the research, about research-related injury, and about your rights as a research subject.

  10. If the study involves treatment or therapy:

    • To be told about the other non-research treatment choices you have.
    • To be told where treatment is available should you have a research-related injury, and who will pay for research-related treatment.

Want to speak to an IRB staff member?

Get in Touch