When you volunteer to take part in research, you become a valuable resource to help doctors and scientists learn more about diseases and human health.
Research is essential to improve health outcomes, advance medical treatment for diseases, and explore behaviors that impact human well-being. Research includes but is not limited to:
Before participating in research, you should understand your rights as research participants, how you are protected, and what to do when you have concerns about a research study. This helps volunteers like you to make informed voluntary decisions before and after agreeing to participate in research.
There are ethical guidelines in place that protect research volunteers and the integrity of science. These guidelines are upheld by the investigator and a reviewing body called the Institutional Review Board, or IRB for short. Each entity is responsible for the ethical treatment of all research volunteers.
As a research participant, you have the right:
Learning as much as possible about a research study will help you to make a clear decision of whether or not you want to engage in the study.
Your research team is your biggest resource when learning about studies. This team is a well-trained and knowledgeable source for information regarding all aspects of your participation. They should be able to openly describe why they are conducting the research, what type of data will be collected from you, how it will be stored, and what you will be doing during the course of the study.
Before you begin a study, your research team will provide you with an informed consent document that discloses in detail what to expect. You have the right to take this document home with you to discuss these details if you feel it is necessary. You may seek advice from family members, your community, clergymen, or other providers to see if the study is a good fit.
A few helpful questions to consider before you participate in research include:
For additional information, please read the NIH's article 'What You Should Know About Research.