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California Initiative to Advance Precision Medicine Know Your Rights

The types of questions, support structures, and rights to ask questions and get answers about when a patient considers participating in research.

Your Rights

Patients have the right and responsibility to be knowledgeable and inquisitive about every fact of a research study before participating and can withdraw consent to be included in the study at any time.

Every participant should be informed of their many important rights and responsibilities before volunteering for a clinical trial. 

Know the Details of a Study

  • Know the purpose and design of the trial, how long the research will last, and any possible outcomes of the study.
  • Understand your diagnosis fully and be prepared for any new or experimental drugs, treatments, or procedures.
  • Inquire about reimbursement for costs pertaining to the study.
  • Know who has access to your data and how it will be kept confidential and secure.
  • Know you can refuse participation for any reason, refuse treatment, and withdraw your consent at any time.
  • Ask all the questions you want before deciding to participate in the study.

Patient Support

  • Receive informed consent information in culturally and linguistically appropriate ways.
  • Involve your caregiver and primary care physician to advocate for you and help the researchers make important decisions about the treatments under investigation.
  • Be informed of any possible risks, benefits, side effects or discomforts caused by the study.
  • Researchers should disclose all information about alternative treatment options and their prognosis to you before participating.
  • Agree to a continued access plan prior to the start of the clinical trial should it result in safe and effective treatment for your condition.

Questions to Ask or Consider

Two illustrated figures with a large question mark in the middle of them.
  • Why do researchers believe the intervention being tested might be effective? Why might it not be effective? Has it been tested before?
  • Will I be paid to participate in the study? Are there any reimbursement opportunities?
  • What are the possible interventions that I might receive during the trial and what are the potential risks that may happen?
  • Will I be allowed to continue receiving treatment after the trial ends?
  • Will I be paid to participate in the study? Are there any reimbursement opportunities?
  • How long will treatment take to complete the study?

For More Information

Theresa Spezzano, PhD
Theresa Spezzano is Health Equity Officer of the California Initiative to Advance Precision Medicine at OPR. She co-leads the Representative Research Collaborative.
theresa.spezzano@opr.ca.gov

Special thanks to Policy Fellow Bridgette Smith for assembling information for the Equitable Consent webpages.