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Vol. 03 Issue 2, Spring 1998
In addition to continued research, an improved information base, and the development of appropriate policies, reducing the risk for breast cancer requires a variety of community based efforts, using various strategies for various groups. BCERF has initiated several regional and community based projects which draw on ideas from researchers and practitioners in the fields of health, science and risk communications (see "Research Commentary" in this newsletter). Key to these efforts, which include four Community Demonstration Projects, is a high level of familiarity with, and involvement of, the target community or group. These ideas and efforts are described here, with the hopes of motivating educators, other professionals, and concerned groups and individuals to become involved with community efforts to further understand and reduce breast cancer risk.
In educating about environmental risk factors for breast cancer, BCERF is challenged in many ways. We are working with emerging science in toxicology, in nutrition, in genetics, in cancer biology, and in many of the other fields relevant to the study of breast cancer and environmental risk factors. Emerging science means uncertainties. These uncertainties, to which scientists are accustomed, may become incorporated into an estimate of risk. Estimates of risk, by nature, are never exact. Even when based on the best available science, any expression of risk involves assumptions and judgments. Risk is a complicated concept; there is not even agreement on how to define risk.
Scientists define risk in a technical manner:
Risk (technical) = |
Those at risk or who feel they might be at risk expand the definition of risk to include their personal concern about the hazard and potential for exposure for themselves and/or their family :
Risk (perception) = |
BCERF's critical evaluations of the scientific literature on the relationship of selected pesticides and diet and lifestyle factors to breast cancer risk contributes to characterization of the hazards. This involves the use of the available science - epidemiology, animal studies, and studies of breast cancer cells in the laboratory - to determine whether there may be an effect by the given chemical or dietary factor on breast cancer risk. Risk characterization involves a specific description of a hazard, requiring information on exposures, and possible differences in susceptibilities of various populations. The lack of research on exposure remains one of the major challenges associated with risk characterization. BCERF's approach is to acknowledge the gaps and uncertainties, characterize the hazards based on what is currently known, and take into consideration the vulnerability factor by working with target groups to develop and carry out risk reduction strategies.
To develop and carry out appropriate risk reduction strategies, BCERF builds on ideas from researchers and practitioners in the fields of public health, biomedical science and risk communication. Two interrelated principles that help inform BCERF's public education work include: 1) educators should be grounded in the community or group to be addressed, and 2) they should provide opportunity for real participation on the part of the community or group. These are good guidelines in all kinds of communication, and are critical in environmental health risk communication.
June Fessenden MacDonald, Director of BCERF, and her research group more than 14 years ago first argued that new perspectives were needed if risks are to be managed effectively in our society. They emphasized the importance of social values in the perception of risk, as well as the role of trust and the localness of the messenger in the understanding of risk. June and her group concluded that risk communication processes with improved methods of public involvement offered the best hope for finding satisfying and successful ways to manage risk (1). With breast cancer, these ways may vary between different individuals, communities, and groups. BCERF risk communication activities are based on the tenet that one must focus on the local level, recognizing that receivers of risk information are not empty receptacles waiting to be filled with simplified technical information about an environmental risk, but rather play a critical, interactive role in the process of risk communication. Their research findings emphasized that risk communication should be looked at not only in terms of how accurate, detailed, or intelligible the information is, but also in terms of how the information will be interpreted. (1)
An educator based in the community starts from a better vantage point in understanding the information, values, and events that shape a local, or specific group's, understanding of a problem. Communication of risk is often mistakenly seen as simply getting the public to understand the facts. This "technical" approach unfortunately leads to educators spending their time and resources trying to improve the scientific message, without regard for understanding the real differences in the meaning of the problem for various individuals, groups and communities. Just as health risks are not uniformly spread across society, subsequent risk reduction strategies can not be uniform if they are to be successful.
As Max Lum, the Director of the Division of Health Education at the Agency of Toxic Substances and Disease Registry, summarizes, we "... need to stop thinking of health risk communication as a process in which health experts deliver information to a passive audience. Instead there must be an exchange of information during which all sides interact." He acknowledges that initiating this outreach process can be difficult, but encourages as a starting point: being there in the community to be able to experience and identify with residents' concern; being concerned and showing it through action; being honest, using science where it exists and admitting where it does not; and being accessible by allowing people access to the educator and his or her institution (2). Likewise, individuals and groups must make it their business to become involved, bringing their important contributions - interests, knowledge, values, and concerns - to the table. An opinion poll cited in a Presidential/Congressional Commission on Risk Assessment and Risk Management 1997 report stated that an overwhelming majority of US citizens think that communities and individuals should be involved at all levels in health and environmental protection (3).
A community-based educator, with the support of a solid background in the relevant scientific research, and availability of scientists as resource people, is in a good position to take a complete "communicative problem-solving" approach to health and environment issues, as suggested by researcher Katherine E. Rowan (4). A problem-solving approach precludes the possibility of relying on the "recipes for 'quick and effective results'" to which Craig Trumbo refers (see "Research Commentary" in this newsletter). In this approach, educators know what goal they have selected and why, based on their knowledge of the issue and the group to be addressed. The goal(s) may be building trust, creating awareness, deepening understanding, gaining agreement on solutions and/or motivating action, depending on the situation and the group with which the educator is working. Educators can then anticipate likely obstacles and develop participatory approaches for overcoming them.
BCERF has oriented its work toward the community level for practical as well as these theoretical reasons. Practically, the small core staff of this statewide program simply cannot carry out educational interventions locally, and with all of its interested audiences. Therefore, 1997 was a year of "train-the-trainer" programming for BCERF, designed to enable community educators around the state to incorporate information on breast cancer and environmental risk factors into their ongoing work. In 1998 we are initiating three focused community demonstration projects (one was begun in 1997), in which we plan, carry out, evaluate and hopefully replicate in other settings, education and risk reduction projects based on the ideas described in this article.
Risk reduction strategies may involve reduced exposure to pesticides and toxic other chemicals in the environment (including home, play and garden environments), dietary and other lifestyle changes, and new policies. Different communities, target groups, or individuals may be inclined to focus on particular risk factors and develop appropriate risk strategies related to those factors. These BCERF community demonstration projects are designed to respond to those specific needs.
BCERF's partnership with Cornell Cooperative Extension (CCE) provides the possibility of community-based projects on a variety of themes and with a variety of groups. The four BCERF Community Demonstration Projects are taking place in Greene, Nassau, Suffolk, and Ulster counties.
Greene County. The newest BCERF Community Demonstration Project has just started in Greene County, in the Hudson Valley. BCERF Extension Educator Marilyn Wyman, an experienced environmental educator with CCE in this county, will facilitate communication on breast cancer and environmental risk factors with members of the public and with policy makers. This region is a site of much active debate about environment and health. The county itself is a rural county which does not have an extensive public health infrastructure. Marilyn's previous experience and involvement in community-based projects in Greene County allows her to access community contacts that will help integrate the objectives of BCERF into a rural setting. Objectives will be developed which reflect the unmet needs expressed by the groups with which Marilyn has developed relationships and programs, with regard to environment and health. For example, she will be investigating liaisons with the local agricultural community. She says, "we're looking at a range of key players who will assist us in determining the best way to provide our resources to educate our community members on this crucial and timely topic."
Nassau County. In Nassau County, BCERF Extension Educator Maria Sant'Angelo is working collaboratively with local agencies and breast cancer groups on intergenerational efforts to reduce the risk for breast cancer. The emerging science is beginning to clarify the importance of breast cancer risk reduction for girls and young women. Exposures and lifestyle patterns during this time may be important predictors of breast cancer risk later in life. Because girls' and young women's exposures and lifestyle patterns are so dependent on features of their homes, schools, and communities, and actions of those around them, these projects closely involve family members and community organizations.
In addition, efforts with CCE of Nassau County include proposals for several intensive interventions to be initiated as funding sources are confirmed. One proposed project is called, "Healthy Together: An Intergenerational Program for Women and their Daughters to Reduce the Risk of Breast Cancer." Healthy Together Advisory Committees will guide the project throughout its life cycle, with a separate committee representing each community involved. Limited resource families, more than half of whom represent ethnic minority groups, comprise the selected communities. This project directly taps into the ideas, relationships, and programs of the community organizations which have evolved to help meet the needs of this population. Another proposed project involves intensive work with school personnel, establishing a team of health, home and career skills, physical education and science teachers, as well as school nurses, coaches and school lunch staff. This team will provide important insights and channels for communication with pre-adolescent girls and their mothers.
Aside from numerous other community collaborations, Maria participates in the Long Island Breast Cancer Network, and works cooperatively with local breast cancer groups. Maria says that "these members of the community have unbelievable energy and creativity, and are a key part of the shared goal of reaching pre-adolescent girls and their mothers in Nassau County."
Suffolk County. The question of whether Long Island's agricultural history of pesticide use has a relationship to breast cancer incidence continues to be explored. In the meantime, it is important for industries which use pesticides and the customers they serve to be informed of the emerging science in this area. Horticulture and landscape professionals have had a particular interest in this issue because of their and their families' greater exposure to these chemicals. Robin Buoniello, a New York State certified professional arborist and BCERF Extension Educator with CCE of Suffolk County, is leading an effort to: provide research-based information on breast cancer and environmental risk factors to this group; facilitate communication between professionals and customers; and encourage risk reduction through safe and proper use of, and, where possible, alternatives to, pesticides. An advisory group comprised of professionals and customers will be formed to identify issues, concerns, and needs.
Because this project addresses a very contested and unresolved question within the study of breast cancer and environmental risk factors, it makes sense to keep in mind that the goals of a risk communicator are not to bring about consensus, but rather to help raise the level of understanding of a relevant issue, using the most complete information available at the time, and therefore providing tools for decision-making. Although all questions can't be answered today, Robin's approach is that "we must continue to have the patience that is necessary to see our efforts through, and reap the benefits that research can offer us."
Ulster County. With a grant from the Cornell Statewide Program Committee, a BCERF educational intervention and research project is taking place cooperatively with CCE of Ulster County. Along the same lines of reasoning described above for the intergenerational risk reduction projects in Nassau County, this project, entitled "Growing Healthy Girls," focuses on the role of community youth leaders in promoting and establishing healthful behavior patterns in girls. June Strand, an experienced extension educator in the areas of family resource management and nutrition, and adult and 4-H youth, works with Dawn Scribner, a registered dietitian and certified dietitian-nutritionist. Together they are developing and pilot-testing intervention strategies to help youth leaders serve as positive role models in this realm of healthful lifestyle behaviors. Integral to this effort is the inclusion of a variety of youth organizations, with which CCE in Ulster County has a history of successful collaborations, and the involvement of these organizations from the conceptualization stages of the project.
Work with these youth leaders provides important insight into participants' understanding of the relevant health risks, as the intervention is designed to allow for the emergence of ideas and perceptions from the point of view of the participants. This in turn provides an opportunity to work with these perceptions and help enable the leaders to understand and make the most of their close and lasting connections with girls in the community.
These projects represent BCERF's current efforts to make use of the emerging science on breast cancer and environmental risk factors in educational interventions which have a strong chance of achieving enhanced public understanding, and breast cancer risk reduction. BCERF's translational research and written educational materials comprise the risk messages, which are one part of a risk communication process. Supplementary "tools for understanding" provide information on topics such as breast cancer rates and biology. All of this information needs to be accompanied by focused, participatory efforts with defined target groups, in order to increase the likelihood of understanding risk, and risk reduction.
It is hoped that these projects contribute to a model of environmental health education which is in tune with the realities of contemporary public health issues. Breast cancer is a multifactorial disease, and its known and suspected risk factors will need to be addressed through a variety of strategies - spanning personal lifestyle to policies on environmental changes. There is much more to be learned with regard to whether, and the extent to which, a given risk factor contributes to a population's breast cancer incidence. In the meantime, educators can work within communities to understand concerns, facilitate communication, involvement and learning, and identify and carry out appropriate, workable risk reduction strategies.
1. Fessenden-Raden, June, Janet M. Fitchen, and Jenifer S. Heath, "Providing Risk Information in Communities: Factors Influencing What Is Heard and Accepted," Science, Technology & Human Values , Vol. 12, Issues 3 & 4, No. 60 & 61, 1987.
2. Lum, Max, "Environmental Public Health: Future Direction, Future Skills," Family and Community Health, April 1995.
3. The Presidential/Congressional Commission on Risk Assessment and Risk Management, Risk Assessment and Risk Management in Regulatory Decision-Making: Final Report, 1997.
4. Rowan, Katherine E., "Why Rules for Risk Communication Are Not Enough: A Problem-Solving Approach to Risk Communication," Risk Analysis, Vol. 14, No. 3, 1994.
Program on Breast Cancer and Environmental Risk Factors
Cornell University, College of Veterinary Medicine
Vet Box 31, Ithaca, NY 14853-6401
Phone: 607.254.2893; Fax: 607.254.4730
Email: breastcancer@cornell.edu
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