Know Your Research Rights
What are your rights as a research participant?
At the Center for American Indian Community Health, we believe that you need to know your rights when you participate in research. KUMC has many things in place to help protect you. To learn more about what KUMC does to protect you, please visit the Human Research Protection Program website: http://www.kumc.edu/human-research-protection-program.html
Some things you should know…
What’s the difference between research and medical care?
Research aims to answer questions. Participating in research may feel like going to the doctor and may include some medical care, but that is not the goal. The goal of research is to answer questions about science and medicine. Some questions might include how your body works or if a new program or drug works. Research is done under the supervision of a research team. If medical care is included as a part of the research, it is done under the supervision of a physician. The government or a private company usually pays for research.
What rights do I have as a research participant?
As a research participant, you have the right:
- To be treated with respect at all times
- To be told what the study is about
- To be told about other options that you have rather than participating in the study and if they are better or worse than being in the study
- To be told about risks and benefits to being in the study
- To ask questions
- To refuse to participate without penalty
- To withdraw from the study at any time without penalty
- To know who is in charge of the study and who is funding it
- To know how your personal information will be used and who will have access to it
- To be free from pressure when deciding whether to participate or not
- To get a copy of your signed consent form
- To have your personal information kept as confidential as possible
Why should I participate in research?
- To advance science and medicine
- To find new medicines and treatments
- To benefit future generations
- To access the newest and best treatments
What questions should I ask before I participate in a research study?
- What is the purpose of the study?
- How long will the study last?
- What is the difference between this study and normal care?
- If I participate, what will my responsibilities be?
- What other options do I have besides participating?
- Will I have to pay for anything like drugs or treatments?
- What are the risks (side effects) and benefits to participating?
- What will the researcher do with my information?
- What happens if I decide to leave the study early?