Deciding whether to participate in research is your choice. That choice may involve many considerations, whether you are looking to participate yourself, or if your child, friend, or someone for whom you are a caregiver has been asked to participate in research. Below, we have provided some resources you may find helpful in making your decision.
Research Participant Rights
If you are considering taking part in a research study, you should be aware of your rights as a research participant:
- To be treated in a caring and polite way.
- To be told what the study is trying to find out.
- To be informed what will happen, and whether any of the procedures (including any drugs, devices, or treatment methods) are different from what would be used in standard medical or psychological/emotional care.
- To be told about possible discomforts, or side effects, that may occur during the study.
- To be told if you can expect any direct benefit from being in the study and, if so, what the benefit might be.
- To be told of other choices for treatment you have, if any, and how the alternative treatment might be better or worse than being in the study.
- To be told what sort of treatment is available if any medical problems arise.
- To be allowed to ask any questions about the study both before agreeing to be involved and during the study.
- To be free from pressure when deciding if you want to be in the study.
- To be told about new information learned during the study that might affect your safety or your willingness to continue to take part in the study.
- To refuse to be in the study, or to change your mind about being in the study after it has started. This decision should not affect your education, your employment, or the care or services you receive from the institution conducting the research.
- To receive a copy of your signed consent form.
Questions for the Research Team
The Office for Human Research Protections maintains a useful list of questions you can download, print, and ask a research team before participating in a study.
Types of Research
There are different types of research – clinical research, clinical trials, and social, behavior and educational research – and many different procedures used in research. Some of the studies involve medical procedures and multiple visits, while other studies may involve just a one-time survey or questionnaire. Harvard Catalyst has developed resources that cover many topic areas – such as research involving MRIs, blood draws, surveys, genetic research, to name a few. Learn more.
Common Research Terms
There are many common words/terms used when describing research. Some of those words mean different things in the context of research. Learn more.
Research Participant Resources
- To learn more about research conducted at Boston University, visit the Office of Research website and The Brink, BU’s digital research magazine.
- OHRP Videos The Department of Health and Human Services (DHHS) Office for Human Research Protections (OHRP) videos provide basic information on research participation.
- StudyFinder lists studies taking place at Boston Medical Center or Boston University Medical Campus.
- Research Match is a national research registry that connects potential participants with researchers.
- nih.gov contains may useful resources, including information on clinical trials taking place in the United States, and all over the world.
- CISCRP (Center for Information and Study on Clinical Research Participation) is a non-profit organization to inform stakeholders about clinical research and the role of each stakeholder
- CenterWatch provides information on clinical trials for research participants and professional researchers
Research Complaints or Concerns
If you have a general question (e.g., where to go for your study visit, when you should expect to receive compensation), concern (e.g., you think you may be experiencing a side effect of the research intervention, you are not sure if you can make your next study visit) or complaint (e.g., it was hard to find the research site, the person at the reception desk wasn’t expecting you), you should first contact the research team, and specifically, the principal investigator whose name and phone number is listed on the consent form.
If you have a complaint or concern that you feel should be reported and investigated (e.g., you were not fully informed about what the research involved, you feel as though the consent process was rushed, your questions were not sufficiently answered, you felt as though your rights were violated) please contact the BU IRB office: firstname.lastname@example.org or 617-358-6115.
Your feedback matters. If you’ve participated as a human subject in a BU research project, please consider filling out our Research Participant Satisfaction Survey. We will use what we hear to make improvements to our programs and processes.