California Initiative to Advance Precision Medicine Equitable Consent & Guidance for Community Members & Researchers

Every participant has the right to freely volunteer to be a part of a study and be fully aware of what it means to be a participant.

What is Clinical Research?

Clinical research is research that is used to learn better ways to treat people when they are sick, and to keep them from getting sick in the first place. There are many different types of clinical research. Some of these are:

Treatment research, or clinical trials, which tests the safety and efficacy of medications, devices, surgeries, and other medical treatments
Prevention research, which studies the best way to prevent diseases, through medications, vaccines, and lifestyle changes, for example
Diagnostic research, which tries to better identify diseases
Genetic research, which finds links between DNA and diseases are related.

Clinical Research

It is important that people from all backgrounds participate in research. Some types of people, including those from racially and ethnically diverse communities, people over the age of 55, pregnant and lactating people, gender and sexually diverse populations, and people with disabilities do not participate in clinical trials as much as other people. This means that medical tests, treatments, and devices may not be equally effective and safe for ALL potential patients.

Get Involved in Clinical Research

Explore the importance of clinical research and how clinical trials include people with different lived experiences and living environments.

more information

Important Information to know

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

more information

Know Your Rights

This guide will discuss your rights, your responsibilities and key questions to ask when contesting to participate in clinical research.

more information

Addressing Underrepresentation in Clinical Trials

It is important that research activities take into consideration these general factors and minimize the barriers that risk the exclusion of these populations

more information

How to Get Involed in Clinical Research

There are many resources where you can find ongoing clinical research based on specific conditions or illnesses. Search for clinical trials in which you can participate by following the links below.

Clinical Trials

Web-based resource providing access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions.

go to clinicaltrials.gov

NIH Office of Patient Recruitment

Office serves to educate the public about clinical trial participation at the NIH Clinical Center.

go to cc.nih.gov

UC Health Clinical Trials

This site gives you information about the trials going on at the University of California.

go to clinicaltrials.ucbraid.org

About this Project

This project was launched and is managed by the California Initiative to Advance Precision Medicine (CIAPM), located in the CA Governor's Office of Planning and Research.This project was launched and is managed by the California Initiative to Advance Precision Medicine (CIAPM), located in the CA Governor's Office of Planning and Research.

When research trials do not include a wide variety of participants, prevention strategies and treatments might not be as safe or effective for all patients. Our California Precision Medicine Advisory Council Working Group is addressing health disparities by providing community members, researchers and research staff, caregivers, clinics, and sponsors resources and best practices for increasing participation in biomedical research by those individuals, communities, and subpopulations that are currently under represented. Resources and best practices for researchers, sponsors and other interested parties is currently underdevelopment. When research trials do not include a wide variety of participants, prevention strategies and treatments might not be as safe or effective for all patients. Our California Precision Medicine Advisory Council Working Group is addressing health disparities by providing community members, researchers and research staff, caregivers, clinics, and sponsors resources and best practices for increasing participation in biomedical research by those individuals, communities, and subpopulations that are currently under represented. Resources and best practices for researchers, sponsors and other interested parties is currently underdevelopment. The Initiative provides funds for precision medicine demonstration projects, and acts as a knowledge and activity hub for California's precision medicine community.

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.