Reporting Personal Levels of Environmental Chemicals: Impact
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

description: Introduction. Calls to report personal environmental data to research participants (personal report-back) have been raised by environmental justice and breast cancer advocates. Consensus statements by The National Academy of Sciences, Centers for Disease Control and recently, the Interagency Breast Cancer and the Environment Coordinating Committee (IBCERCC) call for personal report-back. These agencies identify the need to develop and test best practices for personal report-back. Our proposed project addresses this need. Our proposal also addresses another critical need identified by IBCERCC: increase the capacity for breast cancer research where exposures are measured during vulnerable times in life, in the womb, during puberty and during pregnancy. This proposal addresses this priority by funding personal report-back, and the study of its impact in The Child Health and Development Studies (CHDS), one of the only studies that can measure exposures in the womb and relate them to breast cancer. CHDS is a 50-year study (cohort) of more than 15,000 families beginning with blood specimens obtained from mothers during pregnancies between 1959 and 1967. The CHDS is now conducting the first womb to breast cancer study and collecting data for future studies on granddaughters and great granddaughters. 98% of participants said they want to receive personal results, but there are no funds to provide them or measure the impact of receiving them. This proposal addresses this lack.
 
 
 
 
 
 
 
 Hypotheses. We hypothesize that personal report-back will increase participant’s commitment to research, knowledge about environmental chemicals, and motivate personal and community-level action to reduce exposures; and that personal report-back will motivate women who are often asked for health advice to discuss environmental chemical exposures with their broad networks, spreading the message.
 
 
 
 
 
 
 
 Methods. We will report personal levels of environmental chemicals to 300 CHDS participants who donated blood samples in 2012-2013 in the Three Generations Breast Cancer Study, funded by the California Breast Cancer Research Program. Assays for persistent chemicals, such as the pesticide DDT, and for modern chemicals, such as flame retardants, will be completed by April, 2014 for 150 African-American women and 150 non-African-American women, who are eligible for the proposed study. We will randomly choose half of the participants to receive personal as well as average study results, while the other half will, at first, receive only average results. We will conduct a telephone interview before and after participants receive results to determine whether participants who receive personal results are more likely to seek and gain knowledge and to try to reduce personal and community exposure. The women who initially did not receive their personal results will get them after their second interview. Personal report-back and information about sources of exposure and ways to reduce it will be provided through a secure web-based tool already pilot tested by our Co-investigator, Dr. Julia Brody, Silent Spring Institute (SSI).
 
 
 
 
 
 
 
 Innovation. This will the first study to: 1) Include participants in a cohort study as Community Partners; 2) Learn whether personal report-back motivates participants to join future studies; 3) Examine the effectiveness of web-based personal report-back for motivating participants to learn about and reduce exposures through personal and community action; 4) Learn whether personal report-back motivates women with many social contacts to spread information about environmental chemicals and breast cancer, thus reaching more women efficiently.
 
 
 
 
 
 
 
 Community Involvement. Our Community Partner is the CHDS Participant Advisory Council who have been working with CHDS and SSI over 24 months to review and design methods for personal-report back and who have also been trained in Community Based Participatory Research (CBPR) during that same time by Dr. Marj Plumb. This is the first time that members of a cohort have been engaged in CBPR.
 
 
 
 
 
 
 
 Use of Study Results and Future Plans. Strengthening commitment of CHDS participants to research, via CBPR and personal report-back, will enhance the potential of the CHDS to continue to learn how exposure to environmental chemicals during windows of vulnerability for the breast may impact breast cancer in multiple generations. We expect that this research can lead to prevention strategies that reduce the human and economic burden of breast cancer soon, without waiting decades. The results will be relevant to other studies being planned or in progress. Since CHDS participants are a varied population with substantial African-American representation, information on the impact of personal report-back will be applicable to the community at-large and to African-Americans in particular, who are known to have higher exposures to many environmental chemicals.