- What is The MyCHDSReport Study?
The MyCHDSReport Study provides results about environmental exposures to study participants, a process known as "report-back." The study includes participants whose blood was tested for possible harmful environmental chemicals as part of the 3Gs Study or Health Disparities Study. Half of the participants are African American and half are non-African-American in order to study differences in environmental exposures between them. The study will help researchers answer questions about the impact of report-back on an individual's knowledge, motivation, and behavior.
- Who is conducting this study?
The Child Health and Development Studies (CHDS), Silent Spring Institute (SSI) and members of the CHDS cohort Participant Advisory Council (PAC) are working together to conduct the MyCHDSReport Study.
- The PAC is a group of 15 CHDS cohort members who provide leadership and guidance on CHDS research activities.
- Silent Spring Institute is a non-profit research organization dedicated to studying the environment and women's health. It is located outside of Boston, Massachusetts. Silent Spring Institute is experienced in conducting studies of personal chemical exposures and reporting results to study participants. Silent Spring Institute is collaborating with PHI on the best methods for reporting results for CHDS participants and will interview some of the participants.
- Who is funding this Study?
The MyCHDSReport Study is funded by the California Breast Cancer Research Program (CBCRP). Created by the State Legislature in 1993, CBCRP is the largest state-funded breast cancer research program in the nation and is administered by the University of California, Office of the President. CBCRP has awarded 860 grants to 98 scientific institutions and community organizations, totaling over $205 million for research in California to prevent, treat, and cure breast cancer.
- What chemicals were tested?
Your blood was tested for environmental chemicals used in the growing of food and in gardening (pesticides), chemicals used in household cleaning products, chemicals used to make household products resistant to fire (flame retardants) and industrial chemicals which may be present in the environment and in everyday products. Download a complete list of chemicals that were tested.
- Why did you choose these chemicals to test?
The CHDS worked with Biomonitoring California to develop the list of chemicals that were tested. This list is based on: the abundance of the chemical in the environment, its harmfulness and its detectability. Harmfulness is determined by whether the chemical has been shown to have health effects in animals or humans. These health effects include the potential to change human development, fertility and reproduction, and cancer risk.
- What do my individual results mean?
Everyday chemicals such as the ones tested in your blood sample are commonly detected in people's blood. Detecting a chemical does not necessarily imply a health risk. Your results are not designed for medical use and the information you receive may not suggest any actions you can take to reduce your health risk or exposure to these compounds. However, if you do choose to receive these results we will provide you with as much information as we can and will refer you to available resources to help you understand them.
- How can I learn more about ways to reduce my exposure to these chemicals?
Please visit the Silent Spring Institute web site.
- What will I be asked to do?
You will be asked to take part in two telephone interviews, one before and one after receiving blood test results. The second interview will be scheduled approximately one month after the first. Report-back materials for this study include summary exposure levels for all the samples tested (called "aggregate results"), and individual exposure levels (called "personal results"). The report also shows how your levels compare with other people in the study and in California and the U.S. You will be randomly assigned to receive your personal results either at the beginning of the study after the first interview or end of the study after the second interview. It is important that you participate in both interviews to determine whether women who receive personal results after the first interview have different knowledge and behavior than women who receive their personal results after the second interview.
- Who will be asked to participate?
A small sample of up to 300 women who recently participated in the 3Gs Study or Health Disparities Study will be asked to participate. All the women contacted will have provided a blood sample during their participation in either the 3Gs Study or Health Disparities Study and provided consent for biospecimen use in future health research.
- If eligible do I have to participate?
No, if you decline participation in the MYCHDSReport study you may still receive your individual and group level web-based report within the same time frame as the women who choose to participate.
- Will I be compensated for my participation?
In recognition of the time you will be contributing to this research effort, you will receive $50.00 after completion of both interviews and viewing the MyCHDSReport.
- How do I schedule my interview?
If eligible you will receive a recruitment letter which includes a "Participation Form." Please complete this form with information about the best way to reach you. An interviewer will contact you by phone to schedule a convenient time to conduct the interviews.
- How will I receive my exposure level results?
Results of the environmental chemicals will be provided to you through a dynamic computer-based reporting system that enables you to select the levels of information that you want. It will also help you to contextualize the information you receive relative to California and nation-wide standards and levels, and in relation to the sources of these chemicals.
- Can I participate if I don't have Internet access?
Yes, we can mail a hard copy of the report to you. However, we encourage anyone who has access to the Internet to view their results through the computer-based reporting system, since it will be much more interactive.
- How will you keep my information private?
Your identifying information will be kept confidential by study staff. Each person is given an ID number and only this ID number will be used on study materials. The information you provide in your interview will be securely stored without any personal information. Neither the CHDS nor its research collaborators will share your personal information with anyone.
- About The Telephone Interviews
The MyCHDSReport Study includes two telephone interviews. The first interview takes place before you receive report-back materials. The second interview will be a month later, after you receive the report-back materials. The information you provide will help design future studies that include report-back. You will be compensated $50.00 after completing both interviews and viewing the MyCHDS report.
- About The Web Based Report
The web based report, called the MyCHDSReport, will present your personal results, study-wide results, and related exposure and health information. This report has been developed by Silent Spring Institute in collaboration with computer scientists at Harvard University's Human Computer Interaction Group. The report was developed to optimize your experience of receiving chemical exposure levels, by allowing you to navigate to information tailored to your personal results and interests.
After all the participants have completed the telephone interviews and reviewed their personal results this study hopes to provide information that can be used to help other researchers who are offering report-back. We will share study results with you through our website, newsletters, and publications in scientific journals. As the findings of the study are published, the CHDS and 3Gs websites will be updated to include summaries of these results.
We are happy to provide you final study reports or reprints of any journal articles when they are completed. Please send a request to the study director, .
The following web based tool is an example of a MyCHDSReport study participant's individual chemical level results. The tool is personalized and includes a summary of results—what chemicals were found, what health concerns they raise, and what actions people can take to protect their health—as well as an explanation of the study's overall findings. By clicking on different parts of the report, users can delve deeper into their results. They can zoom in on a particular class of chemicals and get tips on how to reduce their exposures, such as avoiding products with fragrances or keeping dust levels low in the home. Or users can see how their results compare with those of other participants, whether their chemical levels are higher or lower than the average. Results are presented graphically to make the information easy to interpret; hovering with a mouse over different parts of a graph triggers little pop-up messages that help participants interpret what they are seeing.
View the report here.
Silent Spring Institute (SSI) developed this state-of-the-art digital tool, called the Digital Exposure Report-Back Interface, or DERBI. This interactive web-based tool takes complex chemical exposure data and presents it in a way that the average person can understand. DERBI is open source software developed in collaboration with the Harvard School of Engineering and Applied Sciences, the Harvard School of Public Health, the University of California, Berkeley, and Northeastern University.