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California Initiative to Advance Precision Medicine Important Information to know about Clinical Research

Any person considering volunteering in a clinical trial and is asked to give his, her, or their consent should be informed of the many important participant rights and responsibilities

What is Informed Consent?

All participants are entitled to understand all aspects of the study protocol. Everyone has the right to decide to participate in clinical research. Learn more about the different types of consent. Informed consent is the ethical responsibility of the study researcher to guide and facilitate a participant’s understanding of the clinical trial protocols and define the roles and expectations of you as a voluntary study participant.

What is the goal of informed consent?

Informed consent makes sure that individuals understand all aspects of the study, feeling empowered to decide whether they are comfortable with the study risks and benefits. Individuals can then decide if they want to participate in a study.

Approximately 75% of research participants understand that the research is voluntary and 55% of study participants are able to identify one risk of the study.

What are the types of consent?

Consent for Research
Each patient must be fully aware of the study's purpose, benefits, and use of critical information.
Consent to Leftover Samples
Each participant must be fully aware of leftover samples and allow for storage, maintenance and future use of identifiable data.
Consent for Genetic Sequencing
Each patient must be fully aware of how data will be stored, shared and used in the future.

Can my information be shared?

In order to grant another doctor or other 3rd party access to your personal health information, you need to fill out a medical record information release (HIPAA) forms at your doctor’s office.

Know Your Rights
Read our guide on your rights, your responsibilities and key questions to ask when contesting to participate in clinical research.
learn more
Immigration Status
The Federal Government has issued a final public charge rule, which removes barriers to accessing public benefits for most immigrants. The final rule is effective December 23, 2022.
go to cchs.ca.gov

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.