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Research Participant’s Rights*

Every person who is asked to participate in a research study has rights. As a research participant, you and your child have the following rights:

  1. To be told what the study is trying to learn.
  2. To be told what will happen to you or your child during the study. To be told whether any of the procedures, drugs or devices is different from what would be regularly used in standard care.
  3. To be told about foreseeable risks, side effects and discomforts related to you or your child’s participation in the research study and the possibility that there may be risks that are still unknown.
  4. To be told if you or your child can expect any benefit from participating, and, if so, what the benefit might be.
  5. To be told of the other choices for care you or your child have and how they may be better or worse than being in the study.
  6. To refuse to participate at all or to change your mind about your or your child’s participation after you have agreed to participate or the study has started. This decision will not affect your or your child’s right to receive the care you or your child would receive if you were not participating in the study.
  7. To ask any questions concerning the study both before deciding to participate and/or during your participation in the study.
  8. To be told what sort of medical treatment is available if any complications arise and who will be responsible for the cost of that treatment.
  9. To receive a copy of the signed and dated consent form that explains the study.
  10. To be free of pressure when considering whether you or your child participates in the study.

*Adapted from the State of California Experimental Subject’s Bill of Rights