AMERICAN JOURNAL OF HUMAN BIOLOGY 27:6–15 (2015)

Original Research Article

Applying the Community Partnership Approach to Human Biology Research JULIA RAVENSCROFT,1 LAWRENCE M. SCHELL ,1,2,3* AND TEWENTAHAWIH0 THA0 COLE4 Department of Anthropology, University at Albany, State University of New York, Albany, New York 12222 2 Department of Epidemiology and Biostatistics, University at Albany, State University of New York, Albany, New York 12222 3 Center for the Elimination of Minority Health Disparities, University at Albany, State University of New York, Albany, New York 12222 4 Akwesasne Mohawk Nation, Akwesasne, New York 13655

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Abstract: Contemporary human biology research employs a unique skillset for biocultural analysis. This skillset is highly appropriate for the study of health disparities because disparities result from the interaction of social and biological factors over one or more generations. Health disparities research almost always involves disadvantaged communities owing to the relationship between social position and health in stratified societies. Successful research with disadvantaged communities involves a specific approach, the community partnership model, which creates a relationship beneficial for researcher and community. Paramount is the need for trust between partners. With trust established, partners share research goals, agree on research methods and produce results of interest and importance to all partners. Results are shared with the community as they are developed; community partners also provide input on analyses and interpretation of findings. This article describes a partnership-based, 20 year relationship between community members of the Akwesasne Mohawk Nation and researchers at the University at Albany. As with many communities facing health disparity issues, research with Native Americans and indigenous peoples generally is inherently politicized. For Akwesasne, the contamination of their lands and waters is an environmental justice issue in which the community has faced unequal exposure to, and harm by environmental toxicants. As human biologists engage in more partnership-type research, it is important to understand the long term goals of the community and what is at stake so the research circle can be closed C 2014 Wiley Periodicals, Inc. V and ‘helicopter’ style research avoided. Am. J. Hum. Biol. 27:6–15, 2015.

“The scientists would enter a community with a preconceived notion of what the community’s problems were and with no notion at all of what the community was like. The scientists would then proceed with their research and collect their data. When they finished, they would pack up and leave the community. Very seldom would the community hear from the researchers again. The researchers’ work would eventually appear in the literature or media in one form or another.” Alice Tarbell (Schell and Tarbell, 1998). Comment: “This article was written from two distinct perspectives, the university researchers’ and a community member employed by the research project. We have sought to make that evident by italicizing statements from Tewentahawih0 tha0 Cole.” In the last 30 years the field of human biology has seen research problems move away from describing human biological variation in terms of responses to extreme physical environments to studies investigating the interplay of biology and culture in the context of health studies and the application of life history theory. At this point, it may be useful to ask ourselves, as a discipline, what research problems are pressing and especially relevant for the skillset articulated by the present-day biocultural approach. We make the case that the observed variation in health status and health disparities among and between populations in the US and around the world is a research area that fits squarely within the contemporary project of understanding human biocultural variation and biological difference. Further, in addressing these issues a particular relationship with the study population is needed and beneficial to both the work and the community. Variation in health and wellness outcomes between population groups, are known as health disparities. While C 2014 Wiley Periodicals, Inc. V

health disparities are commonly interpreted as differences in health status according to ethnicity, the potential contributors to possible disparities are much broader: age, SES/class, geographic location (urban, rural), gender, sexual identity, religious affiliation, or other characteristics historically linked to discrimination or exclusion. Health disparities contribute to the poor position of the US in comparison to other countries in terms of standard measures of societal health. For example, in 2010 the US infant mortality rate was ranked 26th of 29 member countries of the Organization for Economic Cooperation and Development (MacDorman et al., 2014). Further, the US’ position had fallen to 26th from 19th in 1980 and 12th in 1960. If infant mortality is an indicator of health then clearly the US is not addressing health needs very well, nor is it improving in its approach. Disparity exists at every phase of the lifecycle. In 2009–2010, for example, the age adjusted rates of hypertension among adults 18 and over were 40.4% among Non-Hispanic Blacks, and only 27.4% among Non-Hispanic Whites with Hispanics having the lowest rate of the three groups (26.1%) (Barnes et al., 2010; Schiller et al., 2012). The health status of Native Americans is usually poorer than others in the US population. Compared to NonHispanic Whites, Native American adults are 2.4 times Contract grant sponsor: National Institute of Environmental Health Sciences; Contract grant number: NIEHS-ESO4913; ES10904; Contract grant sponsor: National Institute on Minority Health and Health Disparities; Contract grant number: NIMHD MD003373. *Correspondence to: Lawrence M. Schell, Department of Anthropology, University at Albany, Albany, NY 12222, USA. E-mail: [email protected] Received 22 August 2014; Revision received 16 October 2014; Accepted 18 October 2014 DOI: 10.1002/ajhb.22652 Published online 7 November 2014 in Wiley Online Library (wileyonlinelibrary.com).

RESEARCH IN PARTNERSHIP WITH COMMUNITIES

Fig. 1. Overlapping interests: where community-based research happens? Adapted from: Schell et al., 2007.

more like to experience a stroke (Schiller et al., 2012), twice as likely to have heart disease (Barnes et al., 2010) and 1.6 times more likely to be obese (Schiller et al., 2012). Given these and other elevated health risks, their life expectancy is considerably lower than the US population, 73.5 versus 77.7 years (IHS.gov website, accessed 1015-2014). This area is one appropriate to investigations by human biologists because these differences in health are likely produced by complex interactions of biological and socioenvironmental factors that move across multiple generations through socially structured pathways and epigenetic mechanisms (Kuzawa and Sweet, 2009; Marmot and Wilkinson, 2006; Schell, 1997). Standard epidemiological models (the epidemiological triad of agent, host, and environment) have not been able to fully solve these problems as many disparities in the incidence and prevalence of disease remain. The emergent field of social epidemiology, with its more integrative approach, has made in-roads disentangling “the web of causation” of such disparities (Krieger, 1994, 2001a, 2001b) but there is still much work to be done. One reason for researching health disparities is to find ways to improve the health of many in our society while another is to parse the major themes of human biology, particularly gaining a more complete understanding of the integration of biological and cultural domains of humanness. We believe that the engagement of human biologists with health disparities is an important opportunity at many levels. In this article we will make the case for commitment as a discipline to health disparities research through community partnership research methods. For efforts at unraveling the problem of health disparities to be successful, embracing a more collaborative model of scientific research (Israel et al., 2010) is more likely to reap results that are meaningful and helpful to the participants in research and to human biologists. Within the discipline of public health the collaborative, partnership-based research orientation has gained a lot of traction, particularly in working with health disparities populations; however, this approach is still relatively novel within human biology. Engaging more collaborative models of research may be useful for human biologists in

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general, beyond research programs specifically dedicated to health disparities. This initiative is not offered in isolation. The theme of greater engagement comes at a time when Science, as a process, is more connected to pubic concerns and more in the public eye than ever before. Whether the motto is “bench to bedside” proposed by NIH, or “translational science”, “impactful science” or any other like term, research is now expected to be relevant to contemporary public concerns and not merely serving the interests of a particular academic discipline (Israel et al., 2001). We believe fitting into this trend is a basic necessity for continued successful funding of human biology research by federal agencies. Whether one is motivated by concern for the public good or to keep human biology relevant or simply by specific disciplinary intellectual challenges, health disparities research often involves working with participants who have experienced racism, poverty, discrimination, and/or deeply entrenched structural and economic disadvantage (Smedley et al., 2003). Often such communities are wary of scientific researchers including anthropologists (Arquette et al., 2002; Minkler, 2004). At the same time, the scientific establishment has embraced new ethics for research that bear directly on the terms of engagement with health disparities populations. In addition to stronger protections for participants instituted with the Belmont Report of 1979, research must also provide clear benefits for the participants and these benefits should be clearly detailed in the grant proposal (US Department of Health and Human Services, 1979). Although this has in the past involved monetary or equivalent compensation for the time and inconvenience of participants in research projects, now more benefit is expected and the definition of benefits has expanded. Further, benefit is defined by the very communities being researched and not only by the academicians serving on ethics boards. The result is that communities seek and expect better benefits from research. If we strive as a discipline to contribute to a better understanding of health disparities and biological variation, more attention to the concerns, needs and resources of communities where the research takes place is needed. Access by human biologists to communities appropriate for the study of public science, health disparity and many disciplinary issues of interest may depend on the consent of the community as well as the participants individually (Israel et al., 2001; Schell and Tarbell, 1998). Consent often depends on the perception of research relevance to the community. In many situations, researchers must obtain consent from community leaders before being allowed to approach individuals or before members of the community are encouraged by those leaders to cooperate in the research. While this may not have been a requirement in the past and is probably still unusual for studies of more affluent groups in the US, it is commonplace for contemporary studies of disadvantaged communities, and anywhere that the locus of control does not reside entirely with the individual (Smith-Morris, 2007). Community interest and consent for a research project is one of three conditions necessary for research. The identification of a research project or area also requires appropriate funding and expertise and interests of the researchers (Schell et al., 2007). Thus, three overlapping spheres emerge as considerations for research: community concerns, sponsors’ goals, and researcher’s expertize American Journal of Human Biology

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TABLE 1. A classification of research models based on degree and quality of community-researcher power sharing and related features (from Biggs, 1989) 1. Collegial—Researchers and community members work together as colleagues with different skills to offer, in a process of mutual learning where community members have equal control over the process. 2. Collaborative—Researchers and community members work together on projects designed, initiated, and managed by researchers. 3. Consultative—Opinions of community members are sought by researchers before the project starts. 4. Traditional—Community members are subjects in the projects of researchers.

and interests (Fig. 1). Of these, the interests of the community may be the least understood of the three components. Therefore, we emphasize this aspect in our discussion and present two research projects that display vastly different approaches and engagement with the research community and participants. Our hope is to convey that moving to a more collegial and collaborative approach to research relationships, while not necessarily easy, has the potential to yield better and more relevant research results. USING THE TRADITIONAL RESEARCH MODEL: THE ALBANY PREGNANCY INFANCY LEAD STUDY Many of the benefits and drawbacks of the traditional model of research with human participants are evident in the study conducted by one of the authors in Albany, NY, the Albany Pregnancy Infancy Lead Study (Schell et al., 2000, 2003, 2004, 2009). This study involved a collaboration between a human biologist, physicians, an epidemiologist and a laboratory scientist from New York State Department of Health. The overall goal was to determine the effect of maternal lead on infant development (physical and mental) and learn how infants acquired a lead burden during the prenatal and early postnatal period. As lead is a known neurotoxicant, the study had an opportunity to obtain information that could make a significant impact on children’s well-being. The study used a traditional approach that has worked well in epidemiology and in many studies describing variation in human biology in response to environmental factors. In brief, subjects (pregnant women) were recruited in a medical bottleneck, the prenatal care clinic. Each woman interested in the study gave their informed consent individually. The goals, research design, and methods, were developed by the researchers with approval from three Institutional Review Boards (IRBs): the university, the prenatal care clinic, and the delivery hospital. Information obtained was analyzed and published in outlets read by professionals in the fields of human biology, epidemiology, and public health (Schell et al., 2000, 2003, 2004, 2009). Test results were provided to the physicians giving care to the participants. This project exemplifies the traditional model because it does not include the participants as true, coresponsible partners in the research process, nor does it respond to community concerns. More specifically, neither the individual women who ultimately participated in the study, or the community (lower income women of Albany County) were involved in formulating the goals of the project, the methods employed, or the interpretation of the results. Further, they did not receive results of hypothesis testing although they did receive results of individual clinical American Journal of Human Biology

tests and lead burden evaluations via their physician. Overall, participants were passive subjects who provided a human laboratory for the research, and while they were compensated financially for their time and inconvenience, their lives were not enhanced in any other way. Further, the research did not create an opportunity for investigators to benefit from any other resources and local knowledge the women had, or from resources in the community. There were no opportunities for colearning, no buy-in on the part of the participants, no capacity-building within the community, and no sustained partnership that lasted beyond the scope of the project. Although this study was able to successfully address some important disciplinary questions regarding growth and development in the modern environment, on reflection, there were some missed opportunities for benefits to both the research and the participants. The project did not lay a foundation for future research with this group. It did not directly inform the participants of the risks of lead exposure, nor did it impart any new knowledge about parenting or child growth to the participants. A more collegial model that incorporated the concerns of the participants most likely would have created greater participant “buy-in” with more tangible benefit for the mothers and enhanced opportunities for additional research. Biggs (1989) has devised a classification of research models that extends from the “traditional” type exemplified by the Albany Pregnancy Infancy Lead Study up to the “collegial” model where community and researchers are partners in specific ways (Table 1). The classification is not comprehensive in that many projects fit somewhere between these four archetypes so it is best viewed as a sliding scale of possible researcher-community engagement. In the collegial model the community’s “equal control” extends beyond controlling access of researchers to the community’s members to control over aims, methods, interpretation, and dissemination as well as decisionmaking power over the disbursement of grant funds. We need to distinguish the many varieties of research done in collaboration with communities as not all are fully appropriate with every community. The phrase ‘community-based participatory research’ (CBPR) is applied to many different research scenarios and the terms ‘partnership’ research, ‘collaborative,’ and ‘collegial’ research are often used interchangeably with CBPR. Although there are multiple permutations, at their heart collaborative/partnership/community-based orientations involve the active engagement and equitable involvement of community members in all aspects of the research process. A further elaboration of community-based approaches is that of ‘participatory action research’ or ‘community-based participatory action research’ (CBPAR) where knowledge gained through the research collaboration is used to effect policy change or directly improve health outcomes through intervention research. The partnership model described below fits within the realm of those approaches that fall under the CBPR umbrella. BETWEEN COLLEGIAL AND COLLABORATIVE MODELS: THE MOHAWK WELL-BEING STUDY A second area of research for our group has involved biological effects of exposure to polychlorinated biphenyls (PCBs); we have conducted three studies with the Mohawk Nation at Akwesasne. This collaboration

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demonstrates several features of partnership research, particularly partnership research with a Native American community, and provides a striking contrast to the more traditional research model deployed during the investigation of lead in the city of Albany. This story begins in the mid 1980’s when the Mohawk Nation at Akwesasne was informed that their lands and waters were polluted with PCBs from nearby industrial plants (Ecology Environment, 1992; RMT, 1986; Woodward-Clyde, 1991). The PCBs contaminated parts of the St. Lawrence River and many fish that have been a mainstay of the diet of the community (Forti et al., 1995; Lacetti, 1993; Sloan and Jock, 1990). The community was warned to avoid locally caught fish and soon after a local midwife came to the University at Albany School of Public Health to learn if breastfeeding was safe in light of the revelations of lipophilic pollutants in breast milk. This inquiry instigated several investigations in the community of the effects of toxicant exposure. One of these early projects, “PCBs and the well-being of Mohawk youth: Growth, development and cognitive-behavioral functioning” (MAWBs) was conducted between 1995 and 2000. As the process by which this project was developed and executed became the model for two subsequent investigations with the community between 2000 and 2014, we will describe it to illustrate the development of a collaborative-collegial research relationship and principles to keep in mind when working with Native peoples in the US. Prior to beginning our series of projects, Mohawk writers and leaders stated their usual experience with researchers (including anthropologists and public health researchers) has really not benefited the community while it did benefit the researchers; the research questions were dictated by the researchers, and the participants and the community in general were never informed of the results by the researchers but second-hand from the media. The community never was queried of their concerns, what questions they sought to answer, or how to address them. They were not equal partners (Arquette et al., 2002; Ransom and Ettenger, 2001; Schell and Tarbell, 1998). The Mohawk experience with outside researchers mirrors the experience of many other Native communities. Our community member research partner described a conversation she had with another Native American woman regarding research:

loss of perhaps 75–90% of the Native American population to western invasion is a reality to the community. Past forced migration from Native American homelands to contemporary reservation lands is known by every group. Further, grandparents or parents of the younger generation may have been forced into Indian residential schools that separated children from their families. Federal policies of advocating the sterilization of Native women existed well into the 20th century.

“‘They came, drew blood from our people, and were never heard from again.’ Which eventually lead to the people of that community to nickname any researcher a ‘mosquito’ and to question: ‘What did they do with our blood? Why weren’t we given the results? Who is using the information they took from us? Will the information hurt us or be used against us?’”

“You’ve already heard, time and time again, that we don’t feel heard and our needs are not being met. We are happy to build partnerships that help us address issues within our communities. And, as I have seen growing up, we have benefited from the projects that we are an equal partner to. But, in the short time that I’ve spent working on a project, I sense a common disappointment in the community. So, what do I have to ask myself? Why are people disappointed? After talking it over with my family, having conversations about research with community members, and even experiencing the research world for myself, it all boils down to one thing: Trust.”

This immediate experience must be placed against the larger historical background that researchers cannot ignore if working with Native American communities— the legacy of colonialism, genocide, and forced removal to reservations. Although researchers regard the history as a thing of the past, among Native Americans past oppression is ongoing, and past suffering is remembered. The history of US policies of domination and attempted extermination are viscerally apparent to each generation. The

“Researchers talk of exterminations, forced migrations, sterilizations, etc. But, do scientist/researchers really understand what it was and is like for us? How one act has affected us for generations? As people, we experience the past in our present and future lives. For instance, when our great grandparents lost our grandparents (their children) to residential schools, the effects are felt generationally. If the child taken to residential school was fortunate to live and return home, their cold and abusive upbringing at residential school transfers on to their adult years. The atmosphere of being taught that being Native American is shameful and sinful often times sticks. In the years that this child had children of his own, the cold, abusive, and shameful teachings make themselves present as the traditional and cultural values of love and tradition were never taught. There starts a cycle of abuse that future children, grandchildren, and great grandchildren endure.” As non-Native anthropologists and researchers we may be acutely aware of the ethnohistorical circumstances surrounding colonization; however, fewer of us are probably able to identify fully with the ongoing lived experience the trauma of the colonial legacy has inflicted over multiple generations. The effects of these histories are felt today and current state and federal policies reinforce this history of oppression. Native communities continue to struggle with incursions to their sovereign status that hamper their ability to protect mineral resources on their tribal lands, fully prosecute long standing land claims with the federal government, and allow uranium mining and polluting coal-fired energy plants in or near their communities. North American Native Americans are in poorer health than any ethnic group in the United States (Jones, 2006; King et al., 2009). CREATING RELATIONSHIPS AND BUILDING TRUST

The historical and recent experience of Native communities is an experience of broken agreements, broken treaties, and broken promises on many occasions when American Journal of Human Biology

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Natives enter into relationships with outsiders. Given this legacy, individual community members and the larger tribal community can reasonably be expected to resist participating in research collaborations. Finding a community partner is key to beneficial partnership. Partners could be a self-actualized community group, a medical service provider, or a government entity. The last is usually the case in collaborations with Native American groups. Tribal councils usually have final approval on tribal lands as to whether or not permission for a project is given. More recently, many tribes have formed tribal IRBs that may be part of, or work collaboratively with, tribal governments and community organizations. Such IRBs are extremely helpful, as they help establish ethics protocols and formalized accountability for researchers and their work. The most important step when beginning a new research collaboration with Native American communities, and probably many indigenous communities, is for researchers to spend time in the community. As simple as this seems, time spent in the community is the real basis for trust in researchers. This step could precede the identification of the research question or coincide with it. Either way, face-to-face contact with a wide range of community members is essential to begin establishing trust and open communication. It can take only one community member who does not know the project or trust the researchers to speak at a community meeting and cast doubt on the project. During the formative period of our collaboration we attended community events, social dances, and shared many meals with our potential research partners and their friends and families. This process is probably familiar to the more anthropologically oriented human biologists, but the lab scientists in our group found this a difficult, even puzzling, part of the partnership process. Researchers should be prepared to invest extended periods of time, possibly multiple years, establishing a relationship before the submission of any grant proposal. PLANNING GOALS AND METHODS AS RESEARCH PARTNERS In 1987 the Akwesasne community established a local committee self-charged with monitoring research within the community. Our proposed project was a response to the Akwesasne Task Force on the Environment (ATFE) and its subcommittee, the Research Advisory Committee, which had requested proposals for research to address the general question of health effects on children due to toxicant exposure. During discussions with the Task Force, both parties realized that many health effects of concern to the community could not be addressed even though the concerns were important ones. The community was too small for investigations of rare outcomes such as certain cancers, birth defects, and such projects therefore were unlikely to be supported by research agencies. Through these discussions the community partners learned about aspects of research methodology and the fundamentals of research funding. The researchers learned that some questions of great interest in terms of anthropological theory were not supportable by the community. A mutual reality was reached. After the initial rounds of discussion, researchers presented specific aims and methods, incorporated commuAmerican Journal of Human Biology

nity input and made revisions until a proposal was accepted with the plan to continue working together to make any modifications necessary for the successful accomplishment of our shared goals using methods consonant with the community’s values. This illustrates some essential principles: the community identified a concern of theirs and the researchers’ proposal was crafted to suit community concerns and characteristics. Both community and researchers contributed to and were invested in the success of the project. This is a very different approach to initiating research. Traditionally, fieldwork and research in human biology and anthropology have moved forward along the following lines: the researchers approach a population/community/ village thinking “you look like an interesting sandbox, let me tell you about my research interests.” In contrast, a partnership model approaches a community with “tell me about yourself and your concerns; let me think about your problem and figure out if I or others I might know might be able to contribute.” “My opinion is my own, but has been influenced by the sentiments of people I respect and trust. To me, the researchers are expected to invest more than just time and money, but also their lives to the projects they commit themselves to. On top of this huge expectation is the notion that researchers are often times viewed as the ‘exploiter’. This comes from my belief that we are a harshly protective and untrusting people. And are very concerned about holding onto the values that we struggle to preserve on a daily basis. The experiences we’ve had as individuals, families, and communities have forced us to take acceptance of an outsider on a ‘prove-you-are-worth’ basis. I believe any outsider attempting to work in a community that has been made to feel inferior and unworthy for generations, has their work cut out for them.” In summary, the first pivotal points in the process include establishing relationships within the community and identification of research questions of interest. For work to be successful it must address a community problem, be executable within the values of the community, be addressable with the research tools in the command of the investigators, and be of sufficient interest to sponsors such as NIH, that the costs will be underwritten (Fig. 1). INSURING BENEFITS TO ALL PARTNERS IN THE RESEARCH COLLABORATION When community members and/or groups are full and active partners in research, the partnership extends well beyond the stage of choosing the research goals and planning the methods to be used. A fundamental tenet of partnership research is that research should provide benefits to the partnering community in addition to the scientists. Although most communities highly value the acquisition of greater knowledge, scientific knowledge is not the only privileged type of knowledge. In fact, it may be disparaged and held in lower regard than other, more emic forms (elders’ knowledge, traditional knowledge, or spiritual/religious knowledge). Potential benefits to the community take many configurations but one of the most direct is the economic benefit. Performing research in a community

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usually entails hiring staff and those workers should, if possible, be hired from within the community. In many communities, but especially Native American communities where there are high rates of unemployment, jobs with competitive salaries are a direct benefit of research activities. Employment by a university or research organization probably entails health insurance and other benefits which may be rare in a community with chronic underemployment. Salaries have downstream benefits as earnings are spent in the community and most dollars are usually circulated among many community-owned businesses. Research projects also need supplies, furniture, office space, and office equipment. Purchasing those from local vendors provides additional economic benefits in the community. Benefit can also include capacity building. For example, in the MAWBS study our data collection staff were hired exclusively from the Akwesasne Mohawk Nation and then trained in the specific methodologies for the agreed upon data collection protocol: anthropometry, phlebotomy, nutritional survey techniques, cognitive assessment, and interview skills. By helping to build the capacity of Mohawk community members to conduct research, the study was able to more closely realize the often cited goal of research communities becoming “active agents in research.” Research universities could offer opportunities for advanced degrees to community partners. Those institutions serious about their commitment to communitybased research and in close proximity to Native communities should develop initiatives to actively recruit Native students as well as faculty members, and then be able to provide both financial, mentoring, and social support to improve the likelihood of success of Native students. Ultimately the goal of community-based research is not only to recognize and value the different skillsets each party brings to the table, but build community capacity to such an extent that community member scientists take the driver’s seat and are able to initiate research projects and grants, inviting outside collaborators to partner with them if needed. Thus, capacity building in the early phases of long-term research relationships is critical to reach this goal. When the community is a stakeholder in the research process it increases the likelihood that the project is more meaningful and relevant at the local level. With this comes both valuable benefits to the overall quality of the research, but also additional expectations on the part of the community. For instance, some of the data needed to address the jointly agreed upon research questions were culturally sensitive (cognitive assessment measures) and deemed potentially harmful to the community if misconstrued by the general public or entities resistant to cleanup and remediation of industrial contamination. Very candid discussions allowed community members and leaders to share their concerns and for a consensus to be reached about appropriate research instruments and how data would be presented. Without a strong consensus on the part of the community that this type of data endpoint was crucial to a question of community concern (the potential impact of neuro-toxicants on the cognitive development of community youth), these data would have been impossible to collect, especially given the legacy of past research at Akwesasne. The investment by the community increased the success of recruitment efforts and retention of partici-

pants in the project. However, “buy-in” by the community rightfully brings substantial expectations of followthrough on the part of the academic partners. There is an expectation of answers and results translated back to community members, and if a study fails in the community’s view to deliver, those who have used their reputations and social standing to advocate for research in the community suffer damage to their credibility. Of course, the most direct benefit of research is the production of tangible solutions or answers to the questions and problems initially posed by the community partners. The possibility of providing “answers” to the community as a direct benefit of research is more likely through a collaborative, partner-based approach, as reaching common goals rather than individual goals is much more likely to be successful. Researchers benefit too, as they are likely to enjoy wider community participation, better study recruitment, input and contextualization of study results, the formation of a relationship that may yield subsequent research projects and follow-up studies, as well as a research approach that is well-received by funding agencies. Sustaining the partnership After the project has commenced, frequent and open communication that moves in both directions is key for sustaining the research partnership over the duration of a project. Academic partners need to update their community partners at frequent intervals regarding progress: the number of participants recruited, laboratory tests performed, status of reporting back of lab test results to participants, etc. These conversations can include discussion of the ongoing efficacy of the research protocols and instruments, and whether the data needed to address the initial specific aims are being collected, and if the protocols remain acceptable to the community. Academic partners in particular need to continue with a consensusbuilding approach and be willing to make mid-stream adjustments in light of input from community partners. Communication, though easier, via technology is not the same as in-person dialog and face-to-face interactions, which may be preferred by community partners. Frequent dialog between the partners not only allows the assessment and reassessment of data collection procedures and study progress but ultimately ensures the collection of good quality data that is credible to the community partners as well as scientifically sound. Communication of research results to participants and community residents “We presented the problems and provided input to researchers and funders on how we wanted things to run. Decades later, work is still underway to try and ‘do something’ about the problems. This wears on the patience of the community, who continue to ask researchers and their project partners ‘have you fulfilled your promise. . .yet?’” Along with maintaining the dialog with community partners, study participants and community members at large should also learn about study progress and analytical results in a timely fashion. Participants in the Akwesasne project were updated with several different kinds of results from the project. First, individual participants American Journal of Human Biology

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received an assessment of their child’s growth and development at the time of examination. They also received their results from laboratory testing (toxicant level and hormone profiles) by letter as they came available. From the community’s perspective this was one of the most critical aspects of the research project and represented the fulfillment of tangible ‘product’ from participation in research. The interpretation of the lab test results in the letters was carefully formulated with our community partners in an effort to provide feedback that was understandable within the local context. For the participants’ families and the community members at large, understanding the levels of each toxicant found in the youth participants and the situating of that exposure in the light of other exposure groups globally was of utmost importance. Second, our participants received regular updates on results from data analysis and hypothesis testing investigating each of the specific aims and research questions we had agreed upon. Before analytical results were shared with study participants, the findings were presented to our community partners and local health care providers. Again, in collaboration with our community partners, great care was taken to best translate analytical findings to our participants and their families. Our community partners also provided a great deal of feedback during these discussions about possible interpretations of data results and greater contextualization of our findings. We hosted several dinners and luncheons for the study participants and their families where new findings were presented with extended time for question and answer sessions. These events were closeddoor and gave the participants an opportunity to learn of project results before they were disseminated to the general public or the media. This protocol was developed in tandem with our community partners to address grievances associated with prior research experiences. More than once, researchers came and went, and the community members only learned of study results through secondhand means, usually media outlets. Our community partners made it very clear that community members did not want to hear about themselves in the media or in scientific journals without hearing from us first. Analytical results were later shared with the Akwesasne community at large. Health practitioners, local leaders, the press, other community organizations, and residents of Akwesasne were all invited to public presentations of the study results. These forums provided additional feedback to the academic partners regarding ongoing questions and concerns as well as the community’s larger perception of the research process. The dissemination of results was coordinated and organized by our community partners and local project staff; they set up the venues, organized publicity, and extended invitations to potential attendees. To facilitate translation of research results, the Akwesasne project had one half-time local staff member exclusively devoted to the community outreach and education activities. If possible, academic partners should plan with their community partners up front for this phase of the research project with funds to provide formalized research dissemination and education activities within the community. The research translation process also included keeping our local project staff informed and familiar with all the analytical findings coming out of the project so they would feel comfortable representing the study and its findings to the local media and community members. American Journal of Human Biology

Communicating to the profession and policy makers: publishing as partners Sharing authorship of scientific findings with our community partners is a critical piece of helping to build community capacity for future research and moving towards a more fully collegial model of research. Our publishing partnership involves a protocol developed jointly between the academic partners and community partners from the ATFE’s Research Advisory Committee. This protocol provides a map for the dissemination of study results that balances the study participants need for timely results and the sometimes lengthy practice of peer-review in academia. The goal was to return results of individual tests or assessments as quickly as possible to the participant and their physician, but analytical results derived from hypothesis testing of specific aims from aggregated data were not reported back to the Akwesasne community at large until they were peer-reviewed (Schell et al., 2007). Our community partners contributed writing and input at the drafting stage of an article, comments, and feedback on analyses, and rewritten and additional material at the manuscript review stage of publication. The comments from journal editors and reviewers were always shared with our community partners and then jointly addressed. This was one of the points of colearning, as community partners gained knowledge of the very specific requirements and hurdles demanded by scientific writing and publication, while academic partners gained greater appreciation of the high stakes involved for the community when data is presented or published. For instance, as litigation between our community partners and industry was occurring concurrent to the project, we listened carefully to feedback provided to us in order to avoid inadvertently misrepresenting the community. The publication protocol allows multiple ‘jumping-in’ points for community partners to provide feedback and comments as well as full-fledged co-authorship. In addition, the points of dialog are not just at the late stages of manuscript preparation, but also early on in the process so community input is not just an afterthought, but at a time when real rewrites and changes in analytical approaches are possible. This publication protocol is less streamlined than those most research scientists and academics have experienced. The process requires a willingness to work via consensus and sometimes over a longer period of time: “It’s hard work. There is a lot more involved than just creating jobs, communicating frequently, and involving the community in dissemination of results. The partnership becomes more involved and turns into a relationship. A long-standing, honest, trusting, intimate relationship between persons with the same agenda.” The importance of following through on the promises and agreements made as research partners cannot be overstated. When community organizations, tribal leaders, or community members take a risk and forge research relationships with outsiders they are putting their good names on the line. Those from the outside need to be aware of the sensitive position that community members who work with researchers are placed: “And then, let’s not forget the people who are employed members of the community. It’s nice to say that you have members of the community working on the project, but

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who are they? Keep in mind that community-members receive more of the skepticism and backlash, and become subject to the same ‘prove-you-are-worthy’ rules. From my own experience, I sometimes felt like the ‘sell-out’, yet, at other times felt like one of the ‘saviors’. I felt like the sell-out when confronted by the skeptical, untrusting, keeping-me-at-arm-length participants who would put me to the test. They wanted to know everything about the project and even WHY I’d been chosen to do the work for the researchers. Then, when I felt like one of the ‘saviors’ of the community, it was when I dealt with the ‘hopefuls’. The compliant, take-what-you-need women that put all of their trust into me and the work I was doing. The hope in their eyes that something better will come for themselves and their children. They are doing ‘their part’ to help solve the issues within our community. Both types of women I admired, but it was the hopefuls that I became weary of. Often times, they let me know that I can have what I want, but I should be warned never to disappoint them. My weariness came from the fact and feeling that I didn’t want to be that person, left in the community, after all the work was done, to say ‘I’m sorry, but we couldn’t fulfill that promise.’” Lastly, it is important for researchers to appreciate while the return of study results and presentations to the community do fulfill the basic expectations, that from the community’s point of view the delivery of the analytic findings is only the beginning. This sentiment is wellexemplified in the following quote: “It’s been said that researchers have built their reputations off the backs of our people. Although known that these researchers come with good intentions and reasonable prospects, the question still remains: have we REALLY benefited from the research? Sure, our people were employed, they’ve been included in publications, and programs were built to address our issues. But what has been, will be, and are the real benefits to our people?” Community members often hope that research projects will solve the problem under investigation. This is a reasonable expectation but research findings may only further elucidate the problem, reveal associations, and provide jumping-off points for more applied solutions. This realization is extraordinarily frustrating for community members as the research process and funding cycles move slowly and it may always seem that “more research is needed”. For Akwesasne community members, the ultimate solution to the environmental contamination problem would be complete restoration of their lands and waters; our project did not deliver this as an outcome and it is immensely tiresome to some community members that after years of research that full remediation has not taken place. However, the research projects that we have been partners in have produced data that have documented the impact of contaminant exposure on the growth, development and health of youth, adolescents, and young adults (Denham et al., 2005; Gallo et al., 2005, 2011). These findings have provided credible and compelling evidence in legal proceedings as well as negotiations with federal regulatory agencies regarding the need for further remediation and clean-up efforts.

TABLE 2. Key elements of the partnership 1. Planning together 2. Community consent, not only individual consent 3. Use local personnel to enhance communication and provide economic benefits locally 4. Open, ongoing communication 5. Communicate results to the participants, community, and scientists 6. Publish with the community to insure fair and accurate depiction of the community

SUMMARY The key elements to the partnership work with the Akwesasne community are summarized in Table 2. We believe the key starting point is the formation of the partner relationship and validation of the proposed research by the community partners and vested community organizations. Doing so recognizes the sovereignty of the community. The community can, at any time, stop the collaboration, and access to research participants closes and the project effectively ends. Ultimate control lies with the community. As sovereignty is a salient issue for most or all Native American communities, researchers’ respect for sovereignty at the outset can be a litmus test of the potential for collaboration (Harding et al., 2012). This article has described the unfolding of one particular research partnership over 20 years, and, again, we wish to emphasize that research partnerships while having similar foundations (such as the establishment of trust and respect) take on many forms that are unique to the specific participants. It is likely that all who have been part of our research relationship will agree that our partnership is not perfect, in fact far from perfect, but what has allowed the research relationship to succeed is the willingness of both sides to continue open communication with each other. Further, partnerships may not fit one category (Table 1), and can change over time. After 20 years our partnership has more characteristics of the collegial model where financial responsibilities are shared as well as the features of the collaborative model. While partnership research may be a widely applicable approach, there are situations where one variant, community-based participatory action research, may not be appropriate. For example, for Akwesasne collaborators issues of sovereignty are paramount and action by outsiders, such as university researchers, is unwelcome. Implementing policy is the province of community members and the community’s government. Other situations where a partnership model may not be possible or appropriate include analyses of historical datasets and also large, national survey data sets. However, the majority of research questions within human biology could be pursued in partnership with the priority population. All in all, any research involving human participants is probably enhanced by careful attention to the relationship between researcher and participants. CONCLUSION Working with Native peoples in the US and with indigenous peoples globally is inherently politicized. Human biologists have shied away from this reality in an effort to preserve the more traditional and comfortable model of scientific research. Vine Deloria, Jr. (1969) commented many years ago “it would be wise for anthropologists to American Journal of Human Biology

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get down from their thrones of authority and pure research and begin helping Indian tribes instead of preying upon them”. Picking up the gauntlet and conducting research that has some tangible benefit, requires explicit acknowledgement of the colonial past and the geopolitical present. If human biologists do move more generally towards a collaborative-collegial model and engage with Native communities and the area of health disparities in general, future research will reflect what is immediately important to those communities. These projects are likely to involve politically charged topics—environmental contamination, land use and land rights, health care access, health disparities, sovereignty, etc. Human biologists will need to be prepared for their research to be used in legal and political contexts (Atwood et al., 1997). This is the double-edged sword of doing relevant, beneficial work that communities find useful. North American Native Americans arguably face the most substantial challenges of any people on earth. Despite living in one of the richest countries on earth, they experience poverty, poorer health, unemployment, criminal activity, domestic violence, and little clear opportunity for eliminating or alleviating these dehumanizing, oppressive forces (Jones, 2006; King et al., 2009). Human biologists are in a unique position to contribute to a research domain that has largely occupied the domain of public health—health disparities research. Our discipline’s methodological skillset, both qualitative and quantitative, and longstanding work unraveling biocultural relationships offers a unique contribution to this effort as well as opportunities to study the web of biocultural causation. ACKNOWLEDGMENTS The author would like to acknowledge and thank the Akwesasne Mohawk community, and in particular we would like to thank Alice Tarbell, Dawn David, Trudy Lauzon, Agnes Jacobs, Maxine Cole, Priscilla Worswick, Ken Jock, Louise Ingle, Amanda Garrow, Helen Lazore, Debra Martin, and Beverly Cook for their many contributions, cooperation, and participation in the research we have done together on this topic. The content is solely the responsibility of the authors and does not represent the official views of the National Institute on Minority Health and Health Disparities or the National Institutes of Health. LITERATURE CITED Arquette M, Cole M, Cook K, LaFrance B, Peters M, Ransom J, Sargent E, Smoke V, Stairs A. 2002. Holistic risk-based environmental decision making: a Native perspective. Environ Health Perspect 110(Suppl 2): 259–264. Atwood K, Colditz GA, Kawachi I. 1997. From public health science to prevention policy: placing science in its social and political contexts. Am J Public Health 87:1603–1606. Barnes PM, Adams PF, Powell-Griner E. 2010. Health characteristics of the American Indian or Alaska Native adult population: United States, 2004–2008. National Health Statistics Reports; no. 20.Hyattsville, MD: National Center for Health Statistics. Biggs SD. 1989. Resource-poor farmer participation in research: a synthesis of experiences from nine National Agricultural Research Systems, OFCOR Comparative Study Paper no. 3. The Hague: International Service for National Agricultural Research. Deloria V. 1969. Custer died for your sins: an Indian manifesto. New York: Macmillan. Denham M, Schell LM, Deane G, Gallo MV, Ravenscroft J, DeCaprio AP, Akwesasne Task Force on the Environment. 2005. Relationship of lead,

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