Article

Health Disparities and Toxicant Exposure of Akwesasne Mohawk Young Adults: A Partnership Approach to Research

Department of Epidemiology, University at Albany, State University of New York, Albany, NY 12222, USA.
Environmental Health Perspectives (Impact Factor: 7.98). 01/2006; 113(12):1826-32. DOI: 10.1289/ehp.7914
Source: PubMed

ABSTRACT

In this article we describe a research partnership between the Akwesasne Mohawk Nation and scientists at the University at Albany, State University of New York, initiated to address community and scientific concerns regarding environmental contamination and its health consequences (thyroid hormone function, social adjustment, and school functioning). The investigation focuses on cultural inputs into health disparities. It employs a risk-focusing model of biocultural interaction: behaviors expressing cultural identity and values allocate or focus risk, in this instance the risk of toxicant exposure, which alters health status through the effects of toxicants. As culturally based behaviors and activities fulfill a key role in the model, accurate assessment of subtle cultural and behavioral variables is required and best accomplished through integration of local expert knowledge from the community. As a partnership project, the investigation recognizes the cultural and socioeconomic impacts of research in small communities beyond the production of scientific knowledge. The components of sustainable partnerships are discussed, including strategies that helped promote equity between the partners such as hiring community members as key personnel, integrating local expertise into research design, and developing a local Community Outreach and Education Program. Although challenges arose during the design and implementation of the research project, a collaborative approach has benefited the community and facilitated research.

Full-text

Available from: Joan Newman
1826
VOLUME 113 | NUMBER 12 | December 2005
Environmental Health Perspectives
Research
|
Mini-Monograph
There is considerable concern about the possi-
ble effects of endocrine-disrupting compounds
such as polychlorinated biphenyls (PCBs) on
the development of thyroid function (Brouwer
et al. 1998; Osius et al. 1999; Persky et al.
2001; Ribas-Fito et al. 2003) and neurobehav-
ioral maturation (Guo et al. 1994; Jacobson
et al. 1990; Schantz et al. 2003). Risk of expo-
sure to environmental contaminants such as
PCBs is not an individual choice but is related
to larger political and economic factors.
Minority communities are often at special risk
of exposure, as they are more often affected by
toxic landfills, incinerators, dumping, mining,
and other environmentally damaging activities
(Akwesasne Notes 1993; Bryant et al. 1992;
Chavis et al. 1983; Commission for Racial
Justice, United Church of Christ 1987; Mohai
and Bryant 1992; Schell and Czerwinski
1998). Native Americans especially suffer from
a combination of these risk factors as they
strive to maintain cultural identity, are often
economically disadvantaged, and are perceived
by mainstream society as ethnically distinct.
The Mohawk Nation at Akwesasne, New
York, “the land where the partridge drums”
(LaDuke 1999, p 11), has shared a dispropor-
tionate amount of environmental injustice
since the construction of the St. Lawrence
Seaway and the St. Lawrence–FDR Power
Project in the 1950s. Cheap hydroelectric
power led to the development of several major
industries directly upstream, upwind, and
upgradient from the community. The indus-
trial sites have contaminated the St. Lawrence
with PCBs (Ecology and Environment, Inc.
1992; RMT, Inc. 1986; Woodward-Clyde
Associates 1991), and Akwesasne now sits
directly adjacent to a National Priority
Superfund Site while two New York State
Superfund sites are nearby and immediately
upriver [U.S. Environmental Protection
Agency (EPA) 1984]. Some local species of
fish, birds, amphibians, and mammals have
PCB levels that exceed the U.S. Food and
Drug Administration’s tolerance limits for
human consumption (Forti et al. 1995; Lacetti
1993; Sloan and Jock 1990). Akwesasne is a
potential candidate for designation as an
Environmental Justice Community (EJC) by
the U.S. EPA because of elevated PCB levels in
adjacent lands and traversing waterways, and
the potential for inhalation exposure from
volatized PCB particulates.
In this community, diet, particularly con-
sumption of fish and other aquatic animals, is
an important route of exposure. Another route
for newborns and infants is via breast milk
(Fitzgerald et al. 2001, 1998, 1992). PCBs are
lipophilic, and, consequently, a mother’s PCB
burden is passed on through breastfeeding.
The passage of PCB body burdens across
generations highlights the importance of
exploring the household and familial contexts
that pattern exposure risk. From a public
health perspective, a solution is to implement
educational intervention programs that dis-
courage community residents from engaging
in activities that might increase their exposure
to local contaminants. However, Native
Americans “are unique cultural and political
groups who have very distinct environmental
problems” (U.S. EPA 1992), as risk of expo-
sure to environmental contaminants is embed-
ded within active participation in the culture
of this community and, indeed, within cultural
survival itself.
Thus, the Mohawk community at
Akwesasne has found itself with two alterna-
tives, neither of which is fully acceptable to
the community. The first is to continue
dietary and cultural practices that increase
exposure to environmental contaminants; this
is, of course, not an option for many commu-
nity members because of the health risks to
adults, children, and generations to come.
The second is to ask community members to
avoid dietary and cultural practices related to
exposure. The Mohawk community has fol-
lowed the recommendations of tribal and
state fish advisories implemented in the 1980s
and early 1990s, and the levels of PCBs in
breast milk and serum have fallen (Fitzgerald
et al. 1995, 1998, 2004). At first glance this
history may appear to be a public health pol-
icy success story, but this interpretation does
not consider the specific cultural context and
implications. For many Native communities,
subsistence-based activities are part of the
surviving traditional culture and identity. A
This article is part of the mini-monograph
“Community-Based Participatory Research.”
Address correspondence to L.M. Schell, 1400
Washington Ave., AS 237, University at Albany,
Albany, NY 12222 USA. Telephone (518) 442-4714.
Fax: (518) 442-4563. E-mail: L.schell@albany.edu
We thank the adolescents and their families at
Akwesasne for their time and participation in the pro-
ject. We also gratefully acknowledge the community
members of Akwesasne for their invaluable contribu-
tions during the partnership process.
The project is funded by National Institute of
Environmental Health Sciences grant ES10904-05.
The authors declare they have no competing
financial interests.
Received 28 December 2004; accepted 11 July 2005.
Health Disparities and Toxicant Exposure of Akwesasne Mohawk
Young Adults: A Partnership Approach to Research
Lawrence M. Schell,
1,2
Julia Ravenscroft,
2
Maxine Cole,
3
Agnes Jacobs,
3
Joan Newman,
4
and Akwesasne
Task Force on the Environment
5
1
Department of Epidemiology, University at Albany, State University of New York, USA;
2
Department of Anthropology, University at
Albany, State University of New York, USA;
3
First Environment Research Projects, Akwesasne Mohawk Nation, Akwesasne, New York,
USA;
4
Department of Educational Psychology and Statistics, University at Albany, State University of New York, USA;
5
Akwesasne
Mohawk Nation, Akwesasne, New York, USA
In this article we describe a research partnership between the Akwesasne Mohawk Nation and
scientists at the University at Albany, State University of New York, initiated to address community
and scientific concerns regarding environmental contamination and its health consequences (thyroid
hormone function, social adjustment, and school functioning). The investigation focuses on cultural
inputs into health disparities. It employs a risk-focusing model of biocultural interaction: behaviors
expressing cultural identity and values allocate or focus risk, in this instance the risk of toxicant expo-
sure, which alters health status through the effects of toxicants. As culturally based behaviors and
activities fulfill a key role in the model, accurate assessment of subtle cultural and behavioral vari-
ables is required and best accomplished through integration of local expert knowledge from the com-
munity. As a partnership project, the investigation recognizes the cultural and socioeconomic
impacts of research in small communities beyond the production of scientific knowledge. The com-
ponents of sustainable partnerships are discussed, including strategies that helped promote equity
between the partners such as hiring community members as key personnel, integrating local exper-
tise into research design, and developing a local Community Outreach and Education Program.
Although challenges arose during the design and implementation of the research project, a collabora-
tive approach has benefited the community and facilitated research. Key words: adolescents,
Akwesasne Mohawk Nation, community-based participatory research, health disparities, Native
American, partnership research, polychlorinated biphenyls. Environ Health Perspect 113:1826–1832
(2005). doi:10.1289/ehp.7914 available via http://dx.doi.org/ [Online 18 July 2005]
Page 1
fundamental component of Mohawk identity
is that the ties linking individuals, families,
and groups to specific locations and land have
symbolic and sacred meaning. For the
Mohawk community, being asked to avoid
activities that reaffirm Mohawk identity is not
a solution to this problem but a bigger prob-
lem in and of itself (Arquette et al. 2002).
Because the cultural integrity and continua-
tion of the Mohawk people is at stake, before
any intervention process begins, those activi-
ties that truly place individuals at risk should
be identified [Akwesasne Task Force on the
Environment (ATFE) 1997] and placed in
the context of Native rather than Western,
economic, environmental, or social priorities
(Arquette et al. 2002).
The goal of the present research is to iden-
tify adverse health effects among older adoles-
cents and young adults stemming from
exposure to local pollutants through behaviors
that express cultural values and affirm cultural
identity. If we can determine the behavioral
pathways to health effects of interest, it may be
possible for the community to continue activi-
ties that contribute to national and cultural
sovereignty while not harming well-being. The
health outcomes of interest are effects on thy-
roid function and measures of school perfor-
mance and community adjustment. These
outcomes were chosen because they represent
the intersection of prior scientific investigations
on PCBs and child development (Brouwer
et al. 1998; Guo et al. 1994; Jacobson et al.
1990; Osius et al. 1999; Persky et al. 2001;
Ribas-Fito et al. 2003; Schantz et al. 2003;
Schell et al. 2002, 2004; Winneke G,
Bucholski A, Heinzow B, Kramer U,
Plabmann S, Schmidt E, et al., unpublished
data) and community concerns for the social,
spiritual, and physical well-being of their
youth. In this article we describe the commu-
nity–academic partnership that developed and
implemented a program of research to investi-
gate the impact of environmental contami-
nants on the health of young adults.
Conceptual Framework—
Scientific Model and the Need
for Indigenous Knowledge
This research is based on the risk-focusing
model (Schell 1997). The model was developed
during a study of multigenerational effects of
lead exposure. The model described how dis-
ability from lead exposure in early life leads to
many outcomes, including reduced cognitive
performance, reduced educational opportunity,
reduced opportunities for employment, and
greater chances of residing in an area of higher
lead exposure in which another generation is
exposed (Schell 1992). The model acknowl-
edges that risk in stratified societies is appor-
tioned according to the social and biological
characteristics of individuals. Risk is said to be
“focused” because several different types of risk
commonly occur simultaneously in individuals
with shared characteristics, and the risks are
compounded over generations. None of the
events in such a sequence are the result of indi-
vidual choices, but each results from larger eco-
nomic and social forces.
The risk-focusing model is a complement
to models of resource allocation common in
health disparities research in which resources
are allocated on the basis of socioeconomic
characteristics (Schell 1997). Risk focusing also
recognizes that risk may be allocated on the
basis of the socioeconomic characteristics that
are themselves the consequences of previous
exposures in one or several generations. A gen-
eral model first relates social position to risk of
exposures (environmental, occupational, etc.),
then exposures to disabilities and suboptimal
health, and, finally, disabilities to social position
and further stratification (Figure 1). Any social
group, whether defined in terms of biological
characteristics or ethnicity or occupation, can
experience suboptimal health and disabilities
through exposure to environmental pollutants
and then reduced opportunities for socio-
economic rewards because of poorer health.
Studies of environmental crises and
disasters, such as the Exxon Valdez oil spill
(Palinkas et al. 1992) and other similar inci-
dents (Curtis 1992; Grinde and Johansen
1995; Harris and Harper 1997; Hild 1998),
suggest that Native groups might be dispropor-
tionately affected by environmental pollution
because of subsistence systems and a cultural
ethos that involve greater contact with the
physical environment. The meaning of “land,”
and the environmental contamination of that
land, has a spiritual significance that not only
contributes to individual health but also affects
identity and well-being at a group level
(Arquette et al. 2002; Ransom and Ettenger
2001). Environmental contamination not only
disrupts sacred ties and connections to place
but also disrupts the practice of many activities
such as consuming locally caught fish, trap-
ping, hunting, gardening, and gathering mate-
rials for basket-making that express and
reaffirm Mohawk identity and culture. These
activities have important cultural and spiritual
meaning but place individuals in direct contact
with local contaminants that may increase
exposure. Thus, contamination of the local
environment is experienced by the community
as a threat to cultural identity because avoid-
ance of PCBs involves the inability to practice
activities that are important to the Mohawk
way of life and connection to the land.
In applying a risk-focusing model to
Akwesasne (Figure 2), socioeconomic position
now refers to behaviors that affirm Mohawk
Partnerships in health disparities research
Environmental Health Perspectives
VOLUME 113 | NUMBER 12 | December 2005
1827
Occupational status
and economic benefits
LowHigh
Risk of poor qualifications
for employment
HighLow
Risk of toxic insult
to development
HighLow
Risk of exposure
to stressors
HighLow
High
Socioeconomic status
Low
Figure 1. Risk-focusing model.
Maternal
exposure
behaviors
Household SES
Adolescent exposure
behaviors
Adolescent
toxicant
burden
MAWBS
Adolescent
toxicant
burden at
17+ years
of age
Cognitive
ability
MAWBS
LMH
Hyperactivity
at 17 years of age
LMH
LMH
LMD
School academic
outcomes at
17 years of age
Adjustment to the
community at
17 years of age
Thyroid hormones
at 17 years of age
Figure 2. Research design. Model of primary relationships presents a diagram of relationships among pri-
mary variables in YAWBS but also includes some variables from MAWBS to indicate some longitudinal
components. SES, socioeconomic status; YAWBS, Young Adult Well-Being Study. Susceptibility factors
are indicated by letters: D, diet; H, mercury; L, lead; M, metabolism. For clarity, some covariates [e.g
.
, non-
focal toxicants such as hexachlorobenzene, mirex, and dichlorophenyldichloroethylene (DDE)] are not
depicted but will be examined.
Page 2
identity as well as usual components of socio-
economic status. The model allows us to cap-
ture the transgenerational pathway of exposure
to PCBs via prenatal and lactational pathways
that stem from maternal exposure. The model
also includes susceptibility factors that may be
allocators of risk, such as age, sex, differences in
metabolism and storage of PCBs, and concur-
rent exposure to other toxicants. Data on toxi-
cant levels and growth from a previous study
(Gallo et al. 2005; Schell et al. 2003) of the
same cohort when members were 10–17 years
of age [the Mohawk Adolescent Well-Being
Study (MAWBS), 1995–2000] are integrated
to provide additional context, time depth, and
control variables.
In applying the model to the current study,
household socioeconomic position is related to
possible “exposure behaviors” identified by
Mohawk community members, such as fish-
ing, hunting, picking berries and herbs, and
cultivating gardens, that may allocate exposure.
Because diet is another possible exposure path-
way, extensive data are collected on adolescent
consumption of locally caught fish and game
over the last five years. A history of maternal
local food consumption before and during her
pregnancy with the participating adolescent is
also collected to assess cross-generational
dietary patterns. The ability of these behaviors
to increase exposure of mothers and children to
contaminants is assessed at two time points by
determining the levels of PCBs and other cont-
aminants in serum of the adolescents between
10 and 17 years of age while participating in
the MAWBS and during the current project,
the Young Adult Well-Being Study (YAWBS).
The primary health outcomes of interest
are thyroid hormone function and measures of
neurobehavioral maturation that pertain to
school performance and community adjust-
ment. The model considers pathways by which
toxicants may affect such important domains
directly and indirectly through hyperactivity
or/and alterations in thyroid function. These
relationships are assessed in individuals at
17 years of age.
Measures of thyroid function (levels of
thyrotropin, total and free triiodithyronine,
and thyroxine) are conducted following stan-
dard laboratory procedures. School functioning
and adjustment is assessed in terms of grades,
standardized test scores from state or provincial
testing, and indicators of disciplinary action
and school absences. Teachers complete two
rating scales to describe the adolescent’s school
behavior. The first of these is the Conners’
Rating Scales–Revised: Teacher Form
(Conners 1997). Because of evidence from pre-
vious studies of problems of attention and
activity level associated with PCB exposure, the
teachers are also asked to complete a second
rating scale, the Attention Deficit Disorders
Evaluation Scale (McCarney 1995). Those
17-year-old individuals not attending school
are interviewed to determine their age at drop-
ping out of school, current employment status,
membership in community organizations, and
delinquency (any arrests or probation).
Attendance records for the last year of school
are also sought. Information about community
membership, involvement, and delinquency is
obtained from those adolescents who are still
attending school.
The model tests pathways between cultural
values, actualizing behavior, exposure, and
health effects. It involves variables that differ
considerably in their degree of standardization.
Outcomes are measured with standard tech-
niques (i.e., measures of toxicant exposure,
thyroid function, standardized tests of hyper-
activity), while measures of proximate and dis-
tal causes of these outcomes (values and
culturally expressive behaviors) are tailored to
the specific cultural context to obtain a detailed
sociocultural analysis. Clearly, the accurate and
reliable measurement of causal variables in the
model depends on knowledge of the commu-
nity—knowledge that may be provided best by
the community itself.
Rationale for a
Partnership Study
To address community concerns, a partnership
developed between academic researchers at the
University at Albany and the Akwesasne
Mohawk Nation. Optimal research partner-
ships with Native communities should reflect
that each Native community is a unique entity
with specific historical, social, political, eco-
nomic, and cultural contexts (Holkup et al.
2004; Ransom and Ettenger 2001) and chal-
lenges. There is no one research “template” or
strategy to apply across all Native peoples.
Because the Akwesasne community is burdened
by environmental contamination and exposure
to toxicants, any partnership with researchers
must be aimed at resolving this burden.
Past research at Akwesasne, as in many
Native communities, has often proceeded in a
manner that benefited those performing the
research, in the form of academic advance-
ment and grant support, rather than benefit-
ing the community itself (Arquette et al.
2002; Ransom and Ettenger 2001; Schell and
Tarbell 1998). Often, research at Akwesasne
progressed with research agendas dictated by
researchers with little or no opportunities for
community input, and there was no clear pre-
sentation of any results or findings by scien-
tists to the community when the research was
finished (Schell and Tarbell 1998).
In the mid-1980s, as the community faced
an ongoing environmental crisis caused by
industrial pollution, the need to become active
in the research occurring within Akwesasne ter-
ritory became evident to many in the commu-
nity. In response, the Akwesasne Task Force
on the Environment (ATFE), a community-
based organization, was founded to “conserve,
preserve, and protect the natural and cultural
resources within the territory of Akwesasne”
(ATFE 1996; ATFE and Research Advisory
Committee 1997). In 1995 the ATFE estab-
lished a subcommittee, the research advisory
committee (RAC), to review and comment on
proposals for research to be conducted at
Akwesasne. The RAC developed and pub-
lished a research protocol (ATFE 1996; ATFE
and Research Advisory Committee 1997) that
included a set of research requirements to help
outside academic researchers become collabora-
tive partners to benefit both academia and the
community.
Conceptual Framework of the
Partnership: The Akwesasne
Research Protocol
The RAC developed three guiding principles
for research based on the Haudenosaunee
(“People of the Longhouse,” of which the
Mohawk Nation is one of six Iroquois
Nations) principles of peace, good mind, and
strength. It is the emerging behaviors that flow
from these guiding principles that serve to
inform the research process and “channel the
inherent good will of humans to work toward
peace, justice, and unity to prevent the abuse
of human beings and mother earth” (ATFE
and Research Advisory Committee 1997,
p 95). The protocol also provides specific
guidelines to researchers regarding community
expectations relating to full disclosure to the
community of the proposed study’s methods
and goals, funding sources, ongoing review of
the research process and opportunities for
community feedback, benefits to the commu-
nity, and capacity-building through local train-
ing and hiring. By following such guidelines, a
collaboration between researchers and the
community is built that is based upon respect,
equity, and empowerment, and which pro-
duces what the community calls “a good
research agreement.”
Equity for the community can include the
provision of monies to hire community
researchers and/or an administration fee to
support the infrastructure of a community
organization. Empowerment includes not only
training community people to conduct
research but also that the university partners
provide expertise regarding environmental con-
taminants and possible adverse health effects.
Health effects research is valuable for the
knowledge it produces, but to attain the full
value of this knowledge, it must be applied in
the development of health prevention strate-
gies, new policies, and amendments to existing
policy and legislation. Within the university,
areas of expertise exist that can provide the
community with a broad base of information
and support to pursue policy change.
Schell et al.
1828
VOLUME 113 | NUMBER 12 | December 2005
Environmental Health Perspectives
Page 3
In addition to equity and empowerment,
to develop a good research agreement the
researchers and the community must generate
respect for each other. Respect is generated by
understanding each others’ social, political,
and cultural structures (Harrison 2001;
Holkup et al. 2004; O’Fallon and Dearry
2002). Examples of respect are good commu-
nication strategies that work for both partners,
cultural sensitivity training for the researchers,
and community awareness presentations that
are clarified and questioned by each partner.
Ultimately, if the need arises, consensus and
mediation processes can be used to develop
procedures that can be honored by both the
researchers and the community.
Roles and Responsibilities:
Components of a Sustainable
Partnership
The Akwesasne model recognizes that research
has profound effects on any community and
seeks to channel these influences to produce
benefits for the community while also respect-
ing the researchers’ needs. The economic bene-
fits for communities are valued in the
partnership, but researchers may not perceive
the benefits of research projects beyond the
new knowledge produced. Research for career
advancement without concern for community
impacts is termed “stepping-stone research” by
Akwesasne partners, because it uses the com-
munity only as a stepping-stone for career
advancement. It is the antithesis of partnership
research, as it does not empower, respect, or
promote equity in the community. Therefore,
the first step in our partnership was recogniz-
ing the mutual and individual benefits of
research and consciously apportioning group
effort toward achieving each partner’s goals.
The honesty and candor required for this activ-
ity was a trust-building exercise.
Taking time to learn about one another.
The current team became acquainted with the
Akwesasne community when planning
MAWBS, which was part of a Superfund
Basic Research Program grant (1995–2000).
MAWBS was conducted after a process of per-
sonnel and project vetting by community
members and organizations in which possible
projects were described and scientists were
introduced to community members interested
in environmental and health problems. The
conversations between researchers and com-
munity members, leaders, and organizations
gave researchers the opportunity to hear the
specific concerns of the community. At this
point, three different driving forces were rec-
ognized: a) the research questions and activi-
ties the sponsor would support, b) what the
community was interested in learning and the
activities the community would support or
allow, and c) the areas of academic researchers’
expertise. Community members and academic
researchers then determined the fit among
these three forces, and they agreed to submit a
grant proposal.
It is also beneficial for academic researchers
to attempt to understand the community’s
history, politics, and culture (Harrison
2001; Holkup et al. 2004; Minkler 2004).
Community members at Akwesasne men-
tioned frequently that when outside scientists
made no attempt to at least learn a little about
local culture, it appeared that the scientists
were either disinterested or lacked respect for
the community. At the beginning of the pro-
ject, cultural sensitivity training sessions were
scheduled to allow researchers to gain greater
understanding of Mohawk culture and thereby
produce the relationship most beneficial to
both partners. In an effort to build awareness
about the community, academic researchers
also attended community events and assisted
the community in various activities, with the
intent of having a presence within the commu-
nity. The ultimate goal was to build a trusting
relationship for mutual benefit.
Partnering with a community before the
research project is launched is best to devise a
mutually beneficial research investigation
(Israel et al. 1998, 2001; O’Fallon and Dearry
2002), but paying for community members’
input maybe difficult. While compensation
for community input is ethical, grantors typi-
cally will not allow payments for work con-
ducted before the funded project period
begins. If other sources of compensation are
not available, the community partners should
be informed of the entrepreneurial and risky
nature of research applications in order to
budget their time and involvement.
Understanding styles of decision making.
Researchers and the Akwesasne community
differ in their styles of decision making.
Among scientists the general model of deci-
sion-making is a balance of majority rule and
deferring to an expert opinion, then moving
on as quickly as possible to the next decision
to be made. The Mohawk style of decision
making is based on consensus building and
everyone having the opportunity to speak. In
Native communities already dealing with
many factors that promote divisiveness, group
solidarity is an important principle; therefore,
a research project that promotes dissension
(even inadvertently) will be harmful. Native
governments and organizations often need
time to consider the proposed project and
make a decision about participation.
Although it is not the role of the researcher to
solve longstanding problems in Native com-
munities, there is a need to appreciate the
resources, time, and commitment that are
necessary to promote community consensus.
The communication needed for reaching a
consensus usually entails a longer process of
decision-making. For scientists, consensus
building can appear to be an exhaustive and
time-consuming process. In a society where
time means money and the production of new
knowledge is routinely weighed against its cost,
extending this process may be viewed nega-
tively. However, obtaining community input
and consensus was crucial to the success of
research at Akwesasne. It enabled us to iden-
tify problems appropriately, formulate
research questions, select appropriate method-
ologies, identify evaluation strategies, and
select effective means of dissemination and
education. Thus, we as researchers learned to
adjust our work schedule and to build in time
for this process.
The role of community partners in the
development of research design and protocols.
Native communities/governments have a pri-
mary responsibility to ensure that their citi-
zens who participate in research do not have
their human rights exploited and that protec-
tions are in place to guard participants’ health
and safety. The ATFE has managed the safe-
guarding of human rights through the devel-
opment of culturally based research
guidelines. The guidelines require submitting
research proposals to the RAC for review to
ensure that external researchers and organiza-
tions adhere strictly to the community’s
established research guidelines, particularly to
how the community as a whole should be
approached for review of proposed studies.
When individual community members are
approached regarding proposed studies, indi-
viduals cannot ensure that their or the com-
munity’s best interests will be served. The
RAC was created to ensure that the rights of
the community are addressed, and, conse-
quently, that the rights of individuals are pre-
served, because individual rights are nested
within protections afforded the community.
Promoting equitable benefits. One key
principle of our partnership is that there should
be benefits to both the community and the sci-
entists and that these benefits serve one
another. The prime community benefit is
greater knowledge that enables choosing the
most effective steps to alleviate the commu-
nity’s toxicant burden. However, other benefits
can include increased capacity in community
leadership and in research performance, and
these benefits can be long lasting. To build
leadership capacity, community members are
included as key project personnel. This practice
also promotes equitable participation and
influence by community partners in the project
and creates structured lines of communication.
Additional benefits accrue when community
members are trained to do the research so that
the training stays in the community (Israel
et al. 2001).
These actions have direct benefits to the
project as well. In our project, individually and
through the RAC, community partners have
Partnerships in health disparities research
Environmental Health Perspectives
VOLUME 113 | NUMBER 12 | December 2005
1829
Page 4
played an integral role in research design and
development of research protocols, including
questionnaires and instruments. The RAC
reviewed the grant application with the com-
munity project staff members and provided
feedback regarding the cultural appropriateness
and acceptability of interview questions and
study procedures, other more effective ways to
ask certain questions, suggestions on how to
streamline data collection to minimize the bur-
den on the participant, and additional ques-
tions that should be asked that were not readily
apparent to researchers. For example, we
wanted to ask about the young adults’ con-
sumption of local foods. Through working
closely with the community we were able to
identify the full range of locally trapped,
hunted, fished, and grown food sources; issues
of seasonality that would affect data collection;
and the most appropriate time units in which
to collect the data.
Community members hired as part of the
project were trained in the skills necessary to
carry out the project, such as anthropometric
measurement, food frequency assessment, in-
person interviews, and data coordination. Local
community members served as the experts on
how such methods might best be implemented
in their particular community, and their exper-
tise and knowledge was integrated into data col-
lection strategies. The community-based
personnel collecting data provided continuous
feedback to researchers in Albany regarding the
utility of the instruments. When encountering
problems with specific questions or an instru-
ment, data collectors were able to make insight-
ful suggestions on how to restructure the
question or instrument to collect the data of
interest in a way that was understandable and
acceptable to the participant.
The community-based staff member who
recruited participants received training in
human “subjects” protocols, and she also cap-
italized on her intimate knowledge of the
community, specifically of the children, to
facilitate recruitment. This researcher had to
consider that, in this Mohawk community,
there was a specific protocol to follow regard-
ing involvement of children in any activity. In
a matrilineal society such as the Akwesasne,
the mothers’ responsibilities are to nurture
and care for their children; therefore, the
researcher routinely approached the mother
first, as the primary caregiver, then the father
second. In addition community members on
the research team knew appropriate avenues
to publicize the study and were available to
discuss the project one-on-one at informal
community events.
Other complexities of this community may
not be familiar to outside researchers. The
Akwesasne community has a traditional gov-
ernment and two imposed elected govern-
ments because it straddles the U.S./Canadian
border. Many parents are employed by these
governments, and their children attend schools
following varying schedules. Data collection
appointments had to be scheduled without
interfering with tribal ceremonies or Canadian
and U.S. school and work holidays. The com-
munity researcher also accommodated the ado-
lescents’ school and extracurricular activities
within their own schedules. For example,
because fasting blood specimens were needed,
the time the families felt was most convenient
for venipunctures was at home before their
children left for school. The researcher then
took the individual to school if necessary. To
make participants comfortable and improve
retention, interviews and measures of height
and weight also were conducted in the home.
However, other accommodations depended on
knowing details of local norms. For example, a
standard research practice is to maintain
friendly eye contact with the participant during
the interview, but at the Akwesasne commu-
nity, researchers noted that minimal eye con-
tact made participants in this young age group
more comfortable. In short, the knowledge
held by local project personnel served as the
basis for the successful recruitment and reten-
tion of participants. In the on-going study our
recruitment rate is currently 65%, a highly
successful rate for a follow-up study of a
hard-to-reach age-group.
In the data analysis and report writing
stage, community partners contribute to
interpreting variables in analyses (especially
variables representing social constructs),
because the community has interpretive
insights that may not be apparent to the acad-
emic partners. Thus, valuing and integrating
local expert knowledge enables the commu-
nity to become active participants in the
research process and improves design, recruit-
ment, data collection, and interpretation of
results (Holkup et al. 2004; Israel et al. 2001;
Stevens and Hall 1998).
Local expert knowledge is also essential for
the creation of an effective Community
Outreach and Education Program (COEP).
The COEP was developed by the community,
with researchers’ influence limited to the inter-
pretation of the sponsor’s requirements. A
community member from Akwesasne who had
experience working on the previous project
(MAWBS) invested personal time to write the
COEP component for the current research
project (YAWBS). That individual was aware
of the RAC/ATFE research guidelines and
used these as a foundation to prepare the pro-
posal. Accordingly, the individual consulted
with other community members and gained
feedback at the monthly ATFE meeting, a
process that identified which outreach pro-
grams would be of most use to the commu-
nity. After funding was awarded, this
individual was hired as the director for the
COEP. Community leadership of the COEP
acknowledges the community’s agenda and
enables community members at Akwesasne to
prioritize activities for support with grant funds.
One of the welcomed COEP activities is spon-
sorship of a bilingual local radio show during
which environmental messages are conveyed in
the Mohawk language Kahniakeha.
Another strategy that helps to maintain
equity between the partners is clearly outlining
mutually agreed-upon protocols. This practice
provides a road map of each partner’s expecta-
tions. For example, the process of disseminat-
ing results to the community and reporting
results for publication and to sponsors was per-
ceived as a considerable challenge (Israel et al.
1998; O’Fallon and Dearry 2002), and this
was discussed at length. Community members
unfamiliar with epidemiologic research
expected results to appear during the process of
data collection. Previous studies at Akwesasne
have been very slow to report results, and this
memory can affect recruitment for the current
project. In contrast, researchers perceive that
final analyses cannot be completed until the
entire sample is collected, often a long process
in a small community, and results should not
be disseminated until “vetted” by the process
of peer review.
We developed a protocol in which results
are categorized as those concerning the individ-
ual and those concerning the community,
which involves a system of checks and balances
whereby research results are reviewed by mem-
bers of the Akwesasne community before they
become final. Results pertaining to individual
participants such as tests of toxicant levels,
results from cognitive and behavioral tests, and
physical growth assessments (height and weight
percentiles) are returned to individuals and
their physicians, as appropriate, as soon as they
are available and well before data collection
ceases. This process produces immediate bene-
fits to the participants because they can then
act on the information provided to improve
their health (McCauley et al. 2001; O’Fallon
and Dearry 2002). The protocol also improves
the community’s trust and belief that final
results will be returned to the community
while reducing pressure on the research part-
ners to deliver final results.
A second aspect of the protocol guides
communication of results relating to the com-
munity, for example, results pertaining to the
relationships among variables of interest on the
population level. The main problem histori-
cally has been the public release of results
about the community to research sponsors,
and to scientific journals and eventually the
press before the participants and the commu-
nity at Akwesasne are informed. The result was
that the community learned about themselves
from others, including groups who were poten-
tial adversaries in legal action (e.g., polluting
Schell et al.
1830
VOLUME 113 | NUMBER 12 | December 2005
Environmental Health Perspectives
Page 5
industries and government agencies that may
be sued for hindering remediation). This route
of communication is contrary to community
culture and is an essentially disempowering
process. A related problem was that researchers,
when asking for community comment, often
did so when the final report was complete and
did not ask for input during the development
of the analysis or the writing of the report.
We developed the Albany–Akwesasne
Protocol to guide the distribution of results
and to incorporate community input during
the process of report writing (Table 1).
Initially, science and community partners
prioritize report writing in the context of the
project’s specific aims. Community partners
are invited to share writing duties, and a pre-
liminary draft is developed by the writing
team. The draft is presented to the partnering
community group or groups, and later a meet-
ing is held to discuss comments on all aspects
of the work but especially regarding the accu-
rate depiction of the community. We try to
allow at least 2 weeks between transmittal of
the draft and the discussion session to allow
community partners to read and discuss the
manuscript. Revision of the manuscript occurs
with community group partners, and when
all authors agree, it is submitted to a peer-
reviewed journal. Because changes are often
required before publication, the editor’s com-
ments are conveyed to the community partners
involved in modifying the text and responding
to the editor. When the manuscript is accepted
but before publication, the results are pre-
sented to the community and to study partici-
pants at a community meeting. This process is
designed to ensure that a) the community
learns about itself directly, b) the community
has input before the manuscript is completed,
and c) the research itself has received the stamp
of peer-reviewed approval so that the results
disseminated to the community-at-large are
accurate and not insulting. The process also
enables those community members who have
made significant contributions to the report to
be co-authors.
Besides the obvious benefits of a more
informed analysis of the data by virtue of com-
munity input, the process teaches researchers
important details of community culture that
are likely to be helpful in understanding the
social production of health disparities. It also
familiarizes community members with the cul-
ture of science, including its epistemology and
economics, leading to greater understanding
and sustainable partnerships with scientists
(Israel et al. 1998; O’Fallon and Dearry 2002;
Wallerstein 1999). In addition, it builds capac-
ity in the community to write scientific reports
and grants of their own (Israel et al. 2001;
Stevens and Hall 1998).
The Albany–Akwesasne protocol facilitates
equity by allowing both partners to receive
credit for their work, input, and assistance.
The policy of including community members
or organizations as authors of scientific papers
acknowledges the value of local expertise and
recognizes the merit of contributions that have
been made throughout the research process,
from identifying research questions of interest
to providing feedback and interpretation on
papers for publication (Israel et al. 2001;
Wallerstein 1999).
Two-way communication. Much of the
partnership relationship is based on frequent
and open two-way communication that is
equally privileged (Holkup et al. 2004). As the
project has progressed, communication con-
tent has varied with the phase of the research.
Strong and frequent internal and external
communication is required to maintain the
working relationship between the academic
researchers, the local project personnel, and the
community. Very frequent contact is needed to
ensure that community project personnel stay
in the loop regarding what is occurring with
the academic research team and vice versa. The
examples described previously illustrate how
such communication is essential for develop-
ment of locally appropriate research design,
data collection instruments, recruitment,
report writing, and dissemination (Israel et al.
1998; O’Fallon and Dearry 2002).
The Potential of Partnership
Research to Understand Health
Disparities
Understanding the relationship between
health disparities and social and physical envi-
ronments involves a detailed, highly contextu-
alized, and carefully nuanced analysis of the
myriad factors that are included in the simple
words “social and physical environments.”
Creating a model that depicts these relation-
ships and then operationalizing the model for
hypothesis testing is a formidable challenge.
We believe the task is impossible without
integrating the detailed knowledge of commu-
nity members with scientific research method-
ologies. The local knowledge and input of
community members has facilitated the devel-
opment and successful implementation of our
research design, which includes a rigorous data
collection protocol in a population that is
already burdened with grave social, political,
and economic challenges related to 500 years
of genocidal policies and neglect.
Few studies have been conducted on the
health effects of toxicants on adolescents or
young adults and even fewer on Native
American youth. The intimate knowledge of
the community by the local project personnel
is the basis for the successful recruitment of
this age group. Community knowledge has
been invaluable in the development of the
questionnaires and instruments during the pro-
ject. Through community collaboration, the
project has been able to develop culturally sen-
sitive, as well as culturally relevant, instruments
that capture complex pathways of exposure.
Because several pathways of exposure in this
community are potentially linked to culturally
based activities that are closely connected to
Mohawk identity, building a trusting partner-
ship in research is critical. The Mohawk com-
munity at Akwesasne has many good reasons
to be distrustful of outsiders, in general, and
academic researchers specifically. It is only
through a collaborative framework based on
relationships of respect that a detailed investi-
gation of the role of the social and physical
environments on toxicant exposure can occur.
Mechanisms to reduce health disparities.
One of the most important contributions of
partnership research is its potential to build
capacity in the communities where the research
takes place. The long history of colonialism,
forced containment to reservations, and on-
going federal policies directed at Native
Americans has had profound effects on Native
communities. Such deeply entrenched social
disparities at Akwesasne have contributed to the
placement of polluting industries next door to
the community, and, consequently, to pattern
exposure to environmental toxicants. Access to
employment and education is limited within
the community. Community members are
closely tied to the land where they live, which is
part of their ancestral Iroquois territories, yet
they have three industrial waste sites as their
current neighbors. These factors are not easily
changed and are connected to larger political
and economic forces that can be linked to
changes at the global level.
On the local level the work of the com-
munity will continue after the research is fin-
ished. Actions as well as policy decisions are
needed to resolve the environmental and
health issues. As the ATFE has reviewed the
risk assessments that have been completed, it
has become obvious that while frameworks
Partnerships in health disparities research
Environmental Health Perspectives
VOLUME 113 | NUMBER 12 | December 2005
1831
Table 1. Albany–Akwesasne Protocol for dissemi-
nation of results.
1. Researchers and community partners discuss and
choose hypotheses to be tested. Partners are invited
to collaborate on writing.
2. Development of preliminary draft.
3. Draft manuscript is presented to the partnering
community group or groups.
4. Comments are received by authors concerning all
aspects of the work, especially regarding the accurate
depiction of the community.
5. Writing partners revise the manuscript to joint
satisfaction.
6. Manuscript is submitted to a peer-reviewed journal.
7. Comments from the editor are shared with partners;
modifications to the manuscript and responses to the
editor are constructed by partners.
8. Upon acceptance and before publication, the results
are presented to the community at large and study
participants at a community meeting.
9. Publication
Page 6
for risk assessments have evolved over time,
there remains a void in the assessment of
health. The void is grounded in a definition of
health within Mohawk society that differs
remarkably from that of mainstream society.
Not only must the physical health of an indi-
vidual be considered but also what has become
known as the emotional, mental, and spiritual
being of the person. Considering only the
physical part of the individual does not
address the health and well-being of the indi-
vidual; therefore, overall health is at greater
risk. Without this consideration, any risk
assessment is lacking and cannot address the
very issue it is supposed to address. The defini-
tions of health used by Tribal/First Nations
are strikingly different from those of Western
health-based professionals and scientists.
Moreover, there is a critical need to expand
the current definition of health and incorpo-
rate traditional knowledge into all facets of
decision making regarding health issues.
The results of this project will provide part
of the picture regarding risk of exposure and
possible health effects in the community.
Work is ongoing at Akwesasne to develop a
more holistic model of risk-based decision
making (Arquette et al. 2002). Results from
this project will be integrated with information
from many other community sources so that a
full picture of the impact of toxicants in the
community can be created. For the Mohawk
community it is critical to identify correctly
those cultural and subsistence-based pathways
placing them at risk and then for them, as a
community, to decide what is acceptable risk.
Research relationships with communities
do not end when the funding does, as acade-
mic partners may be called on to assist with
intervention and policy issues for years and
perhaps decades into the future. Sustainability
and reciprocity of the partnership relationship
are the truest forms of benefit for the commu-
nity (Holkup et al. 2004), for these will aid the
community to reduce or effectively eliminate
persistent racial and socioeconomic disparities
in health in the future.
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  • Source
    • "The CBPR model has been utilized for nearly 25 years and has served as an important tool to advance environmental health sciences in the United States (Arcury et al., 2001; Brody et al., 2005; Brugge and Cole, 2003; Cook, 2008; Cummins et al., 2010; Downs et al., 2010; Horn et al., 2008; Israel et al., 2001; Kegler et al., 1998; Latowsky, 2003; Levy et al., 2006; Minkler et al., 2006; Parker et al., 2003; Petersen et al., 2006; Schell et al., 2005; Schulz et al., 2001; Wier et al., 2009). More recently, the CBPR model proved a useful approach in children's environmental health and disease prevention research (Israel et al., 2005; Kegler et al., 2000; Moodie et al., 2010; Parker et al., 2008; Petersen et al., 2007; Schetzina et al., 2009). "
    [Show abstract] [Hide abstract] ABSTRACT: Community-based participatory research principles have been successfully applied to public health research in U.S. settings. While there is a long history of collaboration between government and communities in China, to date, community-based participatory research has not been used in children's environmental health studies. This article describes how community-based participatory research principles were applied by an international research group to the China Jintan Child Cohort Study, a longitudinal study of malnutrition and lead exposure on cognitive and neurobehavioral development. Challenges emerged and lessons learned from implementing the study were discussed and recommendations were presented. We conclude that the community-based participatory research model can be applied in conducting and promoting environmental health research in China and researchers should be prepared for special challenges and cultural constraints in the implementation of the research in regards to human subject regulations, information dissemination, and culture.
    Full-text · Article · Jul 2011 · International journal of nursing studies
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    • "The term authentic refers to the degree to which a project reflects not only community concerns -which we did quite well (see Methods/CBPR) -but also how well it literally 'wears the face of the community', with representatives of affected residents as full partners [24,48] -something we did not do well. Schell et al. [49] describe the use of CBPR to understand health disparities and toxics' exposures among Akwesasne Mohawk young adults in upstate New York. Hiring community members as key personnel, involving the local community in research design and implementation, and developing a community education and outreach program all helped build a more equitable partnership. "
    [Show abstract] [Hide abstract] ABSTRACT: Despite indoor home environments being where people spend most time, involving residents in testing those environments has been very limited, especially in marginalized communities. We piloted participatory testing and reporting that combined relatively simple tests with actionable reporting to empower residents in Main South/Piedmont neighborhoods of Worcester, Massachusetts. We answered: 1) How do we design and implement the approach for neighborhood and household environments using participatory methods? 2) What do pilot tests reveal? 3) How does our experience inform testing practice? The approach was designed and implemented with community partners using community-based participatory research. Residents and researchers tested fourteen homes for: lead in dust indoors, soil outdoors, paint indoors and drinking water; radon in basement air; PM2.5 in indoor air; mold spores in indoor/outdoor air; and drinking water quality. Monitoring of neighborhood particulates by residents and researchers used real-time data to stimulate dialogue. Given the newness of our partnership and unforeseen conflicts, we achieved moderate-high success overall based on process and outcome criteria: methods, test results, reporting, lessons learned. The conflict burden we experienced may be attributable less to generic university-community differences in interests/culture, and more to territoriality and interpersonal issues. Lead-in-paint touch-swab results were poor proxies for lead-in-dust. Of eight units tested in summer, three had very high lead-in-dust (>1000 microg/ft2), six exceeded at least one USEPA standard for lead-in-dust and/or soil. Tap water tests showed no significant exposures. Monitoring of neighborhood particulates raised awareness of environmental health risks, especially asthma. Timely reporting back home-toxics' results to residents is ethical but it must be empowering. Future work should fund the active participation of a few motivated residents as representatives of the target population. Although difficult and demanding in time and effort, the approach can educate residents and inform exposure assessment. It should be considered as a core ingredient of comprehensive household toxics' testing, and has potential to improve participant retention and the overall positive impact of long-term environmental health research efforts.
    Full-text · Article · Jul 2010 · Environmental Health
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    • "e Collaborative (Petersen et al. 2006). Success depended on strong members who worked well together, a clear goal with high relevance, legitimacy in the eyes of local people, ample funding, a favorable political climate, and positive media attention. STRENGTH's holistic goal was not easily articulated, and our partners struggled to work in concert. Schell et al. (2005) describe a CBPR approach to understanding health disparities and toxicant exposures of Akwesasne Mohawk young adults in upstate New York. Hiring community members as key personnel, bringing local expertise to bear on research design and implementation, and development of a community education and outreach program all helped build a more"
    [Show abstract] [Hide abstract] ABSTRACT: Low income, multi-ethnic communities in Main South/Piedmont neighborhoods of Worcester, Massachusetts are exposed to cumulative, chronic built-environment stressors, and have limited capacity to respond, magnifying their vulnerability to adverse health outcomes. "Neighborhood STRENGTH", our community-based participatory research (CBPR) project, comprised four partners: a youth center; an environmental non-profit; a community-based health center; and a university. Unlike most CBPR projects that are single topic-focused, our 'holistic', systems-based project targeted five priorities. The three research-focused/action-oriented components were: (1) participatory monitoring of indoor and outdoor pollution; (2) learning about health needs and concerns of residents through community-based listening sessions; (3) engaging in collaborative survey work, including a household vulnerability survey and an asthma prevalence survey for schoolchildren. The two action-focused/research-informed components were: (4) tackling persistent street trash and illegal dumping strategically; and (5) educating and empowering youth to promote environmental justice. We used a coupled CBPR-capacity building approach to design, vulnerability theory to frame, and mixed methods: quantitative environmental testing and qualitative surveys. Process and outcomes yielded important lessons: vulnerability theory helps frame issues holistically; having several topic-based projects yielded useful information, but was hard to manage and articulate to the public; access to, and engagement with, the target population was very difficult and would have benefited greatly from having representative residents who were paid at the partners' table. Engagement with residents and conflict burden varied highly across components. Notwithstanding, we built enabling capacity, strengthened our understanding of vulnerability, and are able to share valuable experiential knowledge.
    Full-text · Article · Sep 2009 · Environmental Research
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