State University of New York and the Akwesasne Community
PCBs in Breast Milk in the Akwesasne Mohawk
Body Burden Monitoring

Problem The environment around a particular section of the St. Lawrence River has been contaminated with PCBs from industrial operations on the river. PCB contamination has affected the health and well being of the Akwesasne Mohawk people living in the region.
Objective To look at the relationship between fish consumption and PCB breast milk contamination among nursing Mohawk women at Akwesasne.
Monitoring Type Body Burden
Community Involvement Every aspect of the study from its design to execution has involved the community.
Notable Feature The community-science partnership is, by far, the most notable feature of this study. There is a section about this partnership in the case study and an article is available on the internet for a more in-depth look.

Background: Contamination of a Vital Waterway

The Akwesasne Mohawk Nation lies adjacent to the St. Lawrence River at the terminus of the Great Lakes. The waters that drain from Lake Ontario to the St. Lawrence River carry a myriad of wastes discharged from U.S. and Canadian industries and municipalities located within the Great Lakes drainage basin including airborne contaminants from throughout the world transported and deposited into the basin . These waste materials have contaminated the waters and aquatic organisms traditionally used by the Native Americans for food and ceremonial purposes forcing changes in life styles and traditions. These changes have occurred within a relatively short period and can be directly linked to the rapid industrialization that occurred during the post-war period of the 1940s.

During the 1950s, segments of the St. Lawrence River were dredged and a vast network of locks and dams were created to provide international shipping access to the Great Lakes. Hydro-generating power plants were constructed attracting energy intensive industries including three aluminum manufacturing facilities located on the U.S. side of the river near Massena, N.Y.. Over the next 25 years, the ALCOA, Reynolds and General Motors manufacturing facilities discharged a variety of organic and inorganic compounds, including a host of halogenated aromatic compounds. These fat-soluble substances readily accumulated in the local fish and wildlife and in members of the Akwesasne Mohawk Nation including young women of child-bearing age. Nursing mothers who ate locally caught fish had breast milk containing high levels of these compounds, posing a threat to nursing infants.

All three companies used polychlorinated biphenyls (PCBs), human-made chemicals that were ideal for industrial purposes. PCBs were eventually banned by the EPA in 1978 as the chemical was found to be toxic to both human health and the environment. PCBs at these three plants were released to the environment through industrial wastewater discharges, spills, and illegal dumping into the Racquette, Grasse, and St. Lawrence Rivers. In addition, emissions of pollutants such as fluoride, polycyclic aromatic hydrocarbons (PAHs) and other toxic substances from ALCOA. [and Reynolds contaminated the air in and around Akwesasne. Mercury and the pesticide mirex were discharged by Domtar, a pulp and paper mill located on the Canadian side of the river.

Within five to ten years of the construction of the hydroelectric project, Mohawks began noticing impacts to their environment. By the early 1970s, cattle began showing signs of fluorosis, brittle teeth and bones, birth defects, low milk production and shortened life spans. After consulting with health researchers, the Mohawk community became concerned about possible linkages between these health outcomes and exposure to PCBs through fish consumption. By the mid-1980s, the Mohawk community had issued a fishing advisory limiting fish consumption in the community and warning women of childbearing age, infants, and children under the age of fifteen to eat no fish from the St. Lawrence River due to PCB contamination of the fishery.

An Akwesasne Midwife Sounds the Alarm

During the mid-1980s, an Akwesasne midwife, Mrs. Katsi Cook brought concerns about local industrial contamination to the attention of a New York State Department of Environmental Conservation wildlife pathologist, Ward Stone. Stone collected and analyzed local fish and wildlife and determined that they were highly contaminated with polychlorinated biphenyls (PCBs) and other organic contaminants used by the local industries. Subsequent health investigations conducted during the late 1980s and early to mid 1990s and funded by General Motors and the National Institute of Environmental Health Sciences (NIEHS) determined that young Mohawk mother's breast milk contained elevated concentrations of PCBs and that these compounds were being transferred to their nursing infants. By the late 1980s, the amount of PCBs found in fish and wildlife at Akwesasne was astounding. Snapping turtles (the Haudenosaunee/Akwesasne consider the turtle to be the foundation of the earth), frogs, shrews, and fish were all found to be contaminated, some with levels that would cause them to qualify as hazardous waste.

The Study: Researchers and Community Collaborate

New York State Department of Health and NIEHS developed a study to look at the relationship between fish consumption and PCB breast milk contamination among nursing Mohawk women at Akwesasne, along the St. Lawrence River. Principal investigators were David Carpenter and Dr. Edward Fitzgerald, along with Dr. Ronald Scrudato, who worked on PCB analysis in areas affecting the Mohawk community in New York State.

An additional goal of the study was to conduct the work in a manner addressing concerns about privacy and data ownership. Mohawk women were reluctant to participate in a study of their breast milk, without fundamentally restructuring their relationship with investigators from the New York State Department of Health. Rather than allowing outside experts to conduct a study in which community members would be passive participants, Mohawk women insisted on a more equal relationship in which they would assist in study design as well as own and control the analytic data. The study and results have been published in peer-reviewed journals and community members are among the authors.

Conducting the Study

From 1986 to 1992, 97 Mohawk women were interviewed and donated at least 50 ml of breast milk. The comparison population consisted of 154 Caucasians. After adjustment for potential confounders, Mohawk mothers who gave birth in 1986-1989 had a geometric mean milk total PCB concentration of 0.602 ppm (fat basis), compared with 0.375 ppm for the control group (p = 0.009). These Mohawk women also had significantly higher mean concentrations of nine PCB congeners. Beginning in 1990, there were no significant differences between the Mohawk women and comparison groups. The reduction in breast milk PCB concentrations parallels a corresponding decrease in local fish consumption and may be the result of the advisories issued since 1990 recommending against the consumption of local fish by pregnant and nursing Mohawk women.

In 1988, another study, a Health Risk Assessment Study was performed as part of a negotiated settlement with General Motors. The study focused primarily on Mohawk infants and mothers living in the Akwesasne Mohawk Nation in northern New York State. Dr. Fitzgerald directed the epidemiological study of health effects and exposure to PCBs, polychlorodibenzofurans (PCDDs), polychlorodibenzofuran (PCDFs),and polyaromatic hydrocarbons (PAHs) on these mothers and children. Dietary, residential and occupational exposures were assessed through interviews and environmental monitoring. Body burdens were estimated through serum, breast milk, and urine analysis; and cytochrome P-450 liver enzyme activity was measured through the use of a highly sensitive caffeine breath test. These methods are now being used at other National Priority List (NPL) sites with similar contaminants. Using PCB congener-specific analysis for both body burden and environmental sample measurements, researchers found that the PCB congeners in the environmental samples were also present in the breast milk of Mohawk women. Results of these studies have shown that the mothers have been exposed to PCBs by eating local fish and this contamination was passed to their infants by breast milk.

Various measures were employed in these studies to protect privacy. The main strategy was to assign a code to each study participant, and the relationship between the code and identity was not released. When entering and analyzing data, only the participant code was used. Very few people had access to the relationship between code and identity.

Outcomes of the Study

Health: Breast milk PCB levels declined in the last three years of the six-year study, perhaps as a result of more consistent attention to advisories recommending against consumption of local fish by pregnant and nursing Mohawk women.

Cleanup: General Motors Corp. reports that the decade-old cleanup of hazardous waste sites at its Massena, N.Y. plant will probably take two more years to complete instead of one. GM initially set its goals too high when it said the cleanup of PCB-laden soils and sediments in the plant's lagoons and landfills would be completed by the end of 2003. The 12-acre GM industrial toxic waste site is part of the company's 270-acre industrial complex, bordered by the St. Lawrence River, the Raquette River and the St. Regis Mohawk reservation in northern New York. While the company made progress in the summer of 2003 excavating hazardous materials from its waste lagoon and the Raquette River, GM officials said they need the EPA to decide how the final phases of the project should be conducted.

Taking Action: The Akwesasne Task Force on the Environment

The Mohawk community of Akwesasne had a history of negative experiences working with researchers prior to working with Dr. Carpenter and colleagues. All of this started to change in the mid-1980s when an organization within the Mohawk community, the Akwesasne Task Force on the Environment (ATFE), decided to become actively involved with research projects done at Akwesasne. The ATFE is a community-based organization founded to conserve, preserve, protect, and restore the environment and natural and cultural resources within the territory of Akwesasne, and is comprised of community members who reside in all regions of Akwesasne.

Developing Research Guidelines

In 1995, ATFE established a research advisory committee (RAC) to provide a more formal voice for the community and to respond to the increasing number of research projects being proposed by scientists. The RAC reviews and comments on all studies to be conducted in the Akwesasne region. The RAC developed a set of guidelines, the Protocol for Review of Environmental and Scientific Research Proposals, to standardize community review of the many proposed research projects in the region. This Protocol was developed from the problems encountered and community research processes refined during the course of the past decade.

The three main principles included in the guidelines are taken from the Mohawk language, and translations have been made to the closest possible interpretation of their true meanings. The principles are peace, good mind, and strength, and it is the emerging behaviors that flow from these three main guiding principles that serve as the criteria of the research process. From peace comes respect, from a good mind comes equity, and from strength comes empowerment. When respect, equity, and empowerment are achieved by all parties involved, a good research process will result.

Researchers and the community must generate respect for each other by understanding the other's social, political, and cultural structures. Communication must work both ways for a good research agreement to be generated. Cultural sensitivity training for the researchers and community awareness presentations help to develop a mutual understanding of the research process.

Equity is defined as a sharing of resources. Both the researchers and the community must bring equity to the agreement. Money is only one form of equity. Community knowledge, networks, personnel, and political and social power are other forms of equity useful to the project. Each of these commodities has value and must be shared between the researchers and the community if a good research agreement is to be formulated.

Empowerment is defined as a sharing of power and is the result of a good research agreement developed by both the community and the researcher. Each participant must feel that his or her needs are being met and that their credibility is increasing. Partnership and responsibility continue to grow as more and more respect and equity enter the agreement. Empowerment also means that authorship must be shared between the community and the researcher. Although this is sometimes difficult, the increase in empowerment and credibility is beneficial to a good research agreement, which is the goal of the research guidelines.

The following action steps are specific examples of likely expenditures of time and funds for partnership and involve virtually every step of the research process.
Involve the community in research planning at the earliest stages. This planning would include choosing local health outcomes and methods for assessing exposures and outcomes.
Obtain consent from the community leaders and representatives as well as from individual participants.
Hire community members as field staff and train them to collect data rather than hire already trained personnel from outside the community.
  Keep the lines of communication open and communication flowing in both directions.
  Involve community research partners in communication of research results to the participants.
  Inform the community, not just the study participants.
  Publish the research results for the larger community without denigrating the community in which the research was conducted. Share the authorship and work cooperatively in the publication of papers, press releases, and reports.

Reflections on the Study: A Community-Science Partnership

There are many barriers to partnerships between communities and scientists. However, if a researcher wishes to conduct research on important environmental health issues that affect communities, a partnership with the community must be formed. Partnership does not mean abandoning scientific principles or abandoning community respect and integrity. It does mean to conducting research differently and budgeting for it appropriately. It means having more communication than usual, more meetings, more travel, more joint decision-making (and perhaps a slower decision- making process), more compromise and trust, and some original solutions to issues of quality control and confidentiality.

Perhaps the most remarkable feature of this project is the manner in which it was conducted. It is often cited as a model for a successful partnership between researchers and the community. The success of the partnership was the result of careful planning and clear communication of expectations from both parties. An article describing this partnership in detail can be found at:
http://ehp.niehs.nih.gov/members/1998/Suppl-3/833-840schell/schell-full.html.

This project truly represents a milestone in community involvement and partnership with academic researchers. The research methods employed were quite sophisticated and provided valuable information to the community. Also, the research associated with this geographic area has continued for a long time, cleanup efforts have been slow, and the companies involved have sometimes not been cooperative. In these circumstances there is the danger that the focus will shift away from the community focus toward more directly serving the needs of the researchers. The Akwesasne community has been able to avoid this pitfall because of the strong working relationship forged with the SUNY researchers.

Contact information or web links.

Ron Scrudato, Director
The Environmental Research Center
319 Piez Hall, SUNY Oswego
Oswego, NY 13126
Phone: 315-341-3639 Fax: 315-341-5346
e-mail: scrudato@oswego.edu
website: http://www.albany.edu/sph/superfund/index2.html

David Carpenter
State University of New York
One University Place
Rensselaer, NY 12144-3456
Phone: 518-525-2660 Fax: 518-525-2665
e-mail: carpent@albany.edu
website: www.albany.edu/sph/superfund/index2.html

Edward F. Fitzgerald
Associate Professor

Assistant Director
Bureau of Environmental and Occupational Epidemiology
Center for Environmental Health
Flanigan Square, Rm 200
547 River Street
Troy, NY, 12180
Phone: (518) 402-7990
Fax: (518) 402-7969
E-mail: eff02@health.state.ny.us

Recommended websites about the project (valid as of February 2003)

AKWESASNE TASK FORCE ON THE ENVIRONMENT (ATFE)
http://www.albany.edu/sph/superfund/akwes.html
http://ehp.niehs.nih.gov/members/1998/Suppl-3/833-840schell/schell-full.html (article on the project)
http://www.greatlakesdirectory.org



Dredges are digging up nearly 100,000 pounds of river bottom contaminated from the Reynolds Aluminum plant. A steel curtain was installed to prevent contaminated sediment from floating downriver. Seth Harrison/The Journal News (7/2/2001). Along with the Reynolds Aluminum plant, the General Motors Powertrain facility was responsible for PCB contamination in the St. Lawrence.

A tanker sails up the St. Lawrence River through the Akwesasne Indian Reservation.
Seth Harrison/The Journal News (7/2/2001).

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