Attending an Informed Consent Session

informed-consent-interiorBefore you can participate in the CPMC research study, you must go through an informed consent process. The informed consent process tells you (verbally and in writing) what you need to know to decide whether or not to participate in the study. The informed consent process covers:

  • Background information
  • Why the study is being performed
  • What your participation in the study involves
  • How you will learn about your results from the study
  • Risks, discomforts and limitations of participation
  • Potential benefits of participation
  • How your information will be kept private
  • How you can choose to share or not share your information with other researchers
  • What happens to your sample when the study ends
  • Your rights as a participant
  • Who to contact if you have questions or problems

During the informed consent process, you will watch and listen to a slide show presentation about the study. This may occur in-person or online, depending on the cohort for which you are eligible to participate. Regardless, you may ask any questions prior to deciding if you want to join the study. If you choose to participate, you will be asked to sign a consent form.

You will also submit a small saliva sample. Your saliva contains skin cells from the inside of your mouth. Skin cells, like the rest of the cells in your body, contain a complete set of your DNA. Since it is so easy to collect saliva, this is a good source of DNA to use for genetic testing. Your saliva sample will be safely stored until processing in the Coriell Genotyping and Microarray Center.

The informed consent process is ongoing, meaning that the CPMC will update you if any part of the study changes that may affect whether or not you want to continue your participation. Also, you may withdraw from the study at any time for any reason without penalty.