Genetic histories: Native Americans’ accounts of being at risk for diabetes

Abstract

In an age of genetic medicine, ethnic groups are increasingly being labeled at risk for chronic diseases. Biomedical and genetics research studies have had a significant impact on Native Americans’ perceptions of diabetes risk. Ethnographic interviews with 53 Native Americans were conducted in a tribal community that has participated extensively in studies of diabetes. Tribal members had varying reactions to research labeling them at risk genetically for diabetes, from fatalism to motivation for changing diet/exercise habits. Interviewees spontaneously discussed the ‘thrifty genotype’ hypothesis in diverse ways. Some felt Native Americans had ‘weak genes’ that made them ‘poorly adapted’ to modern society’s diet, while others stated that Native Americans had ‘survival genes’ that historically helped them thrive in harsh environments. Interviewees used genetics as a metaphor for expressing vulnerability in the face of a challenging history that resulted in rapid changes to Native American lifestyles. Interestingly, some tribal members saw biomedical research as a tool to help them ‘adapt’ to the modern world. Collaborative research may provide tribes with unique opportunities to actively address the diabetes epidemic. Researchers’ and healthcare providers’ descriptions of diabetes risk have important implications for how community members perceive their ability to prevent or manage the disease.

Keywords

biomedical research diabetes genetics research genetics risk Native Americans thrifty genotype hypothesis

What is the impact on individuals and ethnic groups of being labeled at risk for diseases (or other socially undesirable traits) based on their genetic makeup? How do ethnic groups react to researchers’ assertions about their genetic risks? This article attempts to address these questions through an ethnographic study of the relationship between a Native American community and biomedical research on the genetic basis of diabetes (here termed medical/genetics research). Social scientists studying biomedicine have noted that healthcare providers hold significant authority for defining the meanings of disease. In his classic text on the ‘sick role’, Talcott Parsons (1951: 475) writes that ‘[t]he fact that others than the patient himself often define that he is sick … is significant’. Both biomedical healthcare providers and researchers define who is considered ‘sick’: research studies often designate specific groups as being at risk for disease. However, these groups also construct their own narratives of what it means to be labeled at risk. Stories told by researchers take on a life of their own in communities that are heavily studied, as is the case for Native Americans living on reservations. Tribal members reinterpret genetic researchers’ narratives about them to create their own accounts of their history and future.

Individuals and communities ‘genetically at risk’

As genetics gains prominence in biomedical research, clinical medicine, and society more broadly, the need also grows for in-depth assessments of genetic technologies’ impacts on diverse individuals and communities. Social scientists, including anthropologists, are increasingly conducting such assessments. Historians Keith Wailoo and Stephen Pemberton (2006: 1) refer to the current era, in which genetic technologies are becoming more entrenched, as ‘the age of genetic medicine’. They predict that ‘genetics in our time will have powerful implications for all humanity’ (Wailoo and Pemberton, 2006: 1). A new category in the age of genetic medicine is that of the individual ‘genetically at risk’, according to sociologists Carlos Novas and Nikolas Rose (2000). They observe that this category has emerged out of researchers’ and healthcare providers’ claims that genetics can be used to predict conditions individuals are likely to develop.

Anthropologist Rayna Rapp, who has written extensively about prenatal genetic testing, notes that biomedical conceptualizations of genetic risk can dominate individuals’ perspectives on disease. She writes, ‘The language and assumptions of this discourse are very powerful, often muffling other strategies by which [patients] … understand risks to themselves’ (Rapp, 1995: 176). In fact, being labeled at risk genetically often has a significant impact on individuals’ behavior, including the strategies they use to manage major life decisions about the present and future. Novas and Rose term these ‘life strategies’, and write that the results of predictive genetic testing, as in the case of Huntington’s disease, cause ‘genetically at risk’ individuals to make strategic decisions about marriage, having children, and their financial affairs (Novas and Rose, 2000: 487). Rapp (2000) examined how genetic testing associated with amniocentesis impacted women’s decisions about their pregnancies, and she found that women of diverse ethnic backgrounds reacted differently to pronouncements about their genetic risks.

The rise of genetics in medicine has led to ethnic groups, not just individuals, being labeled at risk for diseases (Wailoo and Pemberton, 2006: 37). Rapp notes that the meaning of ‘ethnicity’ in genetic testing is different from its popular usage. She writes, ‘“Ethnic background” for a genetic counselor has nothing to do with community traditions or tastes. Rather, it marks certain populations as “at elevated risk” for specific diseases’ (Rapp, 2000: 63). The labeling of ethnic groups as ‘at risk’ for diseases based on their genetic makeup raises key questions: ‘How do groups associated with certain diseases see themselves in the world? How do they envision their health risks, and how do they seek to manage their imagined futures?’ (Wailoo and Pemberton, 2006: 58). These are some of the overarching questions this paper addresses in an ethnographic account of a Native American community labeled at risk for diabetes in medical/genetics research.

Diverse groups and individuals will interpret genetics risk labels in different ways. These differing understandings can be viewed as forms of ‘situated knowledge’, a concept with which Donna Haraway (1988) theorizes. For Haraway, considering multiple versions, or ‘situated knowledges’ of a particular set of scientific findings is necessary for fully understanding the reality represented in those findings. Similarly, examining ‘situated knowledges’ of diverse ethnic groups may help enhance our understanding of how they react to being labeled as genetically at risk.

Some of the first social science studies of genetics in medicine examined genetic testing for single-gene diseases, such as Huntington’s disease, Tay–Sachs disease, and sickle cell anemia (Lock et al., 2007; Wailoo and Pemberton, 2006; Wexler, 2000). Rapp (2000) studied how pregnant women experienced prenatal genetic testing for Down syndrome. The impact of genetics in medicine is not limited to testing for single gene diseases, however. Chronic diseases such as diabetes, hypertension, cancer, and dementia have complex etiologies that may include multiple associated genes, environmental, and lifestyle factors. Genetic testing for chronic diseases is still in its infancy, but this type of testing is becoming increasingly available both through commercial DNA testing companies and research studies (Montoya, 2011).

Individuals’ beliefs about the causes of chronic diseases can also impact their healthcare-seeking behavior. Chavez et al. (2001) found that Latina women who believed that heredity was a central cause of cervical cancer were more likely to seek Pap smear screening than were women who believed that sexual behavior (which is associated with moral stigma) was the main cause. In contrast, interviewees in a study of genetic testing for Alzheimer’s disease susceptibility did not have significant changes in their perspectives on risk for disease, and many of them viewed family history as a more important factor than their genetic polymorphisms (Lock et al., 2007). As genetics technologies become more integrated into clinical medicine, genetic risk labeling is likely to increase. Little is known about how diverse ethnic groups respond to new research that aims to characterize their genetic risk for chronic diseases. Anthropological examinations of their responses and viewpoints may yield a rich framework concerning the benefits and challenges of such research—research that has the potential to both strengthen and stigmatize ethnic groups.

Native Americans, diabetes risk, and the thrifty genotype hypothesis

Epidemiological studies indicate that Native Americans have a high prevalence of diabetes (15%), which is more than twice that of the general US population (Centers for Disease Control and Prevention, 2003). Studies of other Indigenous communities in Canada and Australia also show a high prevalence of the disease. For example, in a review of diabetes studies conducted with Indigenous Australian communities, Minges et al. (2011) found that the prevalence of the disease varied, but ranged up to 33.1% in some communities.

Previous anthropological studies have shown that many Indigenous peoples view the diabetes epidemic as rooted in complex historical and socio-political contexts. Gretchen Lang, who studied how the Dakota people of the Devil’s Lake Sioux Tribe understood diabetes in the 1980s, wrote that her conversations with community members about the disease ‘invariably turned to changes in the community during the late 19th century and for most of the 20th century, including decades of food scarcity, unemployment, dependence on government rations, and later, commodity foods’ (Lang, 2006b: 203). Similarly, Mariana Ferreira, who worked with the Yurok in California, found that tribal members attributed the high incidence of diabetes to historical ‘violence and brutality of Spanish conquistadors, fur traders, gold miners, American soldiers, and Indian policies of the United States government since the eighteenth century’ (Ferreira, 2006: 73). Diabetes among the Mushkegowuk Cree can be viewed both as a ‘sickness’ individuals experience and as a ‘symptom’ of historical changes resulting in poverty and other inequalities for the tribe, compared with other Canadians (Abonyi, 2001). Native Americans’ understandings of diabetes also can impact their health-related behavior (Smith-Morris, 2006).

Scientists, other scholars, and the popular media have identified Native Americans and other Indigenous populations as being at risk for diabetes based on their genetic makeup. For example, some researchers have used the ‘thrifty genotype’ hypothesis to explain the higher prevalence of type 2 diabetes mellitus among Native Americans, compared with other ethnic groups. The thrifty genotype hypothesis, which was first proposed by James Neel, postulates that certain human groups evolved ‘thrifty’ genes in order to maximize metabolic efficiency (that is, to use calories economically and store them as fat) as a survival strategy in harsh environments where periods of food scarcity were common (Neel, 1962). According to this hypothesis, when humans with ‘thrifty’ genes eat a diet high in fat, such as the modern Western diet, they may be more likely to become obese and develop type 2 diabetes than people without that genotype. Thus, the thrifty genotype hypothesis offers an explanation for type 2 diabetes by attributing it to an interaction among genetics, environment, and historical events that results in lifestyle changes for affected populations.

Neel did not suggest that the thrifty genotype was uniquely found in particular racial or ethnic groups. However, as Paradies et al. (2007: 209–10) discuss in their historical review of the thrifty genotype hypothesis, other researchers did suggest that Native Americans in particular were susceptible to diabetes because they had a thrifty genotype (Doeblin et al., 1969; Johnson and McNutt, 1964). In fact, Neel emphasized that dietary changes associated with Western lifestyles are the major factor behind the diabetes epidemic in Native American communities (Neel, 1999). Referring to diabetes research conducted with Native Americans, Neel wrote, ‘[t]he results of the studies done in those groups give no support to the notion that the high frequency of NIDDM [non-insulin dependent diabetes] in reservation Amerindians might be due simply to an ethnic predisposition—rather, it must predominantly reflect lifestyle changes’ (Neel 1999: S3). Since it was first proposed, the thrifty genotype hypothesis has taken on a life of its own. As Michael Montoya writes, ‘The thrifty genotype hypothesis has captured the scientific imagination and underlying assumptions for why ethnically and racially identified populations have increased rates of diabetes’ (Montoya, 2011: 48). The hypothesis has been cited in popular press accounts of the diabetes epidemic among Native Americans (Gladwell, 1998) and has been incorporated into Native American community members’ own understandings of diabetes etiology, as is illustrated by interviewees’ comments presented in this paper. Their reflections illustrate how hypotheses generated by scientists are reinterpreted and refashioned by members of the populations being studied.

Anthropologists and other social scientists have criticized basic assumptions of the thrifty genotype hypothesis, and how it has been deployed in both popular and scientific writings that seek to explain differences between ethnic or ‘racial’ groups (Paradies et al., 2007). Margery Fee (2006) critiques the ways the thrifty genotype hypothesis has been used to stigmatize certain ethnic groups by associating them with diseases such as diabetes. Fee theorizes that the thrifty genotype became popularized because it can be used to explain ‘racial difference’. She writes:

Geneticists want to find genetic causes for diseases that affect large populations that are easily distinguished from others, and ordinary people expect to hear stories that connect genetics with ‘race’ in ways that confirm the longstanding belief in racial difference. These urges may well explain the popularity of ‘the thrifty genotype’ as a story about ‘racial’ identity. (Fee, 2006: 2992)

Other anthropologists criticize the thrifty genotype hypothesis for the discouraging message it sends to Indigenous groups. Mariana Ferreira and Gretchen Lang (2006: 13) write that the thrifty genotype hypothesis results in a ‘perverse message to Indigenous Peoples all over the planet: “If it’s [diabetes] in your genes, there’s nothing you can do about it”.’ Ferreira (2006: 92) also argues that the thrifty genotype hypothesis obscures social and political–economic factors related to the diabetes epidemic among Native Americans. In labeling Native Americans ‘genetically at risk’, the hypothesis could be stigmatizing. It also could give Native Americans the impression that they will inevitably develop diabetes. However, these outcomes might be avoided through increased collaboration with communities in research.

Collaborative research

Native American writers have argued that past research studies (both biomedical and anthropological) have not had clearly useful outcomes for Native American communities (Brugge and Missaghian, 2006; Deloria, 1969). Today, there is considerable mistrust of research in Native American communities, in part due to past cases of research harm. For example, the Havasupai Tribe recently filed a lawsuit alleging that researchers took blood samples from tribal members for a genetic study of diabetes, but then used the specimens—without informed consent—for studies on schizophrenia, inbreeding, and the Bering Strait migration hypothesis (Rubin, 2004). The lawsuit was settled in April 2010, and remaining blood samples were returned to the tribe (Harmon, 2010).

Researchers from many disciplines, such as anthropology, sociology, biomedicine, public health, and education, as well as community development workers have responded to Native American and other Indigenous community concerns by moving toward a more collaborative approach in which community members are treated as equal partners rather than objects of study and intervention. In recent years, there have been many prominent examples of collaborative research in Native American communities, including studies of diabetes (Macaulay et al., 2006), mental health (Jumper-Thurman et al., 2004), cancer screening (Chrisman et al., 1999), population health measures (O’Neil et al., 1998), and archaeology (Atalay, 2006). Research that takes a collaborative approach has the potential to benefit communities by empowering them to find their own solutions to challenges such as diabetes. Other potential benefits include more immediate impacts, such as: services or technical assistance provided to the community by academic researchers; professional and personal development of community members who serve as part of the research team; educational events for the community as a whole; and policy or practice recommendations that emerge from a research study.

Tribal research regulation

Native American communities are increasingly taking control of research through instituting their own tribal research codes and formal oversight processes for studies (Sahota, 2007). The tribe with which I worked asked me to help create a tribal research regulation process, analogous to a university Institutional Review Board (IRB). When inviting community members to participate in interviews, I described my study as an investigation of their opinions and experiences regarding research. I also told them I was working in partnership with the tribe on developing research regulation policies, and that therefore their opinions might inform those policies. I did not describe my study as a medical research project, nor did I get the impression that it was perceived in that way. My project was well received in the community because there were concrete benefits for the tribe. After I worked with the Tribal Department of Health and Human Services (DHHS) to develop the study, it was approved by the Tribal Council, as well as the IRB at Washington University in St Louis. The tribe, which is located in the southwestern United States, has a policy of remaining anonymous in all research publications, and so I simply refer to it generally as ‘the community’ or ‘the tribe’. I also do not identify the biomedical research studies in which community members participated, because to do so might compromise the anonymity of the tribe or individual interviewees.

Methodology

I spent 2 years (2005–2007) working closely with the community, conducting participant-observation in: tribal meetings on research regulation policy; healthcare settings (such as clinics and tribally-sponsored diabetes education events); community support groups for diabetes, dialysis, and cancer patients; tribal language classes; community events and celebrations; and daily community life. My role in tribal meetings concerning research regulation policy was to serve as the ‘scribe’ for Tribal DHHS staff and Tribal Council members. I took detailed notes on the provisions they wanted to include in the research regulation policy, and then drafted policy language accordingly. Participant-observation in research regulation policy development provided me with a unique window into tribal decision-making processes as well as tribal leaders’ perceptions of their constituents’ opinions on diabetes and past research studies. This experience helped me focus my study questions, and it also influenced the topics that I included in my interview questionnaire. However, I asked open-ended questions and did not have an a priori hypothesis about community members’ responses.

I identified and recruited the 53 interviewees through participant-observation. My first few interviewees were my classmates in the tribal language class. Other interviewees were identified at community events, through referrals from community members, and in the personal networks I developed. When I invited individuals to be interviewed, I explained the purpose of my study and asked if they would be willing to participate. At the beginning of each interview, I again obtained verbal informed consent from the interviewee, and asked separately for permission to tape-record. The recorded interviews were subsequently transcribed. Each interviewee received a $20 gift certificate for their participation in the study as well as a copy of their transcript.

Interviewees were purposively recruited in order to include an approximately equal number of individuals (1) with and without diabetes, and (2) who had and had not participated in past research studies. Diabetes status and past research participation were treated as independent variables so that there would be an approximately equal number of individuals in each of the four cells shown in Table 1. This sampling frame was used in order to assess the relationships between diabetes status and community members’ views on research participation. In the final sample, approximately half of the interviewees had participated in past research studies (n=27) while the remaining interviewees had not (n=26). Similarly, approximately half of the interviewees had been diagnosed with diabetes (n=27) while the others had not (n=26).

Table 1.

Interview sample by past research participation and diabetes

Diabetes	Past research participation
	No		Yes
No	Age 20–62 years		Age 21–66 years
	Men 6	Women 7	Men 6	Women 7
Yes	Age 18–61 years		Age 43–73 years
	Men 6	Women 7	Men 6	Women 8

Numbers of interviewees are shown by past research participation, diabetes status, and gender. Age ranges are also shown by past research participation and diabetes status.

Community members were classified as past research participants if they reported having participated in a biomedical research study conducted on the reservation. In the three decades preceding the interviews, several large biomedical research studies had been conducted in the community. These projects were all related to diabetes. They included an observational study of the natural progression of heart disease, a study evaluating different treatments to prevent the onset of diabetes, and a study evaluating a diet and exercise intervention to prevent complications from diabetes. As is shown in Table 1, interviewees ranged from 18 to 73 years old, although individuals who had participated in past research studies and had diabetes were older than the interviewees in the other three cells. In addition to the sampling framework represented in the table, I also recruited interviewees who had diverse religious affiliations, tribal affiliations (many interviewees identified with multiple tribes), fields and levels of employment, and education levels (four interviewees had not completed high school; 11 completed high school; 28 completed some college; six had Bachelor’s degrees, and four had postgraduate degrees). Diabetes in this community is relatively common among younger tribal members, as is evident in the age ranges shown in the table. All tribal members without diabetes reported being close to someone (usually family members) who did have the disease. Thus, most community members are impacted by the disease, whether directly or indirectly (as is described in the next section).

In the interviews, I included a section on perceptions of diabetes in which I asked: (1) What do you think causes diabetes? (2) What do you think puts a person at risk for developing diabetes? (3) How do you think research in the community has affected your knowledge about diabetes? (4) How do you think the rate of diabetes in your ethnic group compares to that in other groups? If the interviewee said that Native Americans have a higher prevalence of diabetes than other ethnic groups I then asked: (5) How does that statistic make you feel? and (6) Why do you think the rate of diabetes is so much higher among Native Americans than in other ethnic groups? I asked these questions specifically because I wanted to assess interviewees’ ‘situated knowledge’ about diabetes and explore how biomedical research studies informed their perspectives. I particularly wanted to understand how being labeled ‘genetically at risk’ shaped interviewees’ feelings about their ability to prevent or successfully manage diabetes.

‘When I get diabetes’: Perceptions of disease risk

Most interviewees gave a multifaceted answer when I asked what caused diabetes or put individuals at risk for developing the disease, citing a combination of genetics, diet, and inactivity. Overall, diet was mentioned by 94 percent of interviewees, inactivity by 63 percent, genetic factors by 64 percent, and obesity by 32 percent. Other causes that were commonly mentioned were alcohol abuse (19 percent) and the loss of a ‘traditional’ lifestyle (farming, hunting, and gathering) due to contact with European settlers and US federal land policies (15 percent). The frequency with which different causes were mentioned was similar in the groups that had and had not participated in research studies.

All of the interviewees said diabetes seemed more prevalent among Native Americans than other ethnic groups. When asked how this statistic made them feel, interviewees expressed a spectrum of emotions, including: feeling sad (33 percent); feeling embarrassed/stigmatized (25 percent); being motivated to prevent diabetes (25 percent); worrying about the future of the community (15 percent); having a sense of self-blame for diabetes (‘it’s our fault’) (13 percent); and feeling hopeless (‘we’re all destined to be diabetics’) (13 percent). Many interviewees expressed more than one of these sentiments, which further demonstrated the complexity of their responses to being told their ethnic group is at risk for developing diabetes.

A few interviewees were not affected at all by pronouncements about their ethnic group’s risk for developing diabetes. For example, when I asked Ellen how she felt about the high prevalence of diabetes among Native Americans, she said, ‘I don’t feel really anything. … Maybe I should be more health-conscious. … I guess it would be more serious to me if somebody told me that “you know what, you’re going to get diabetes when you turn this age, so you need to stop doing this or you need to start doing more of this”.’ For Ellen and other interviewees who held similar sentiments, couching diabetes risk in terms of their ethnic ancestry was not as effective as having their risk described to them in individual terms. Thus, interviewees had mixed responses to being told that their ethnic group was at high risk for developing diabetes. While some interviewees were motivated to prevent diabetes as a result, the majority of them were not.

Similarly, interviewees had diverse responses to being labeled at risk genetically for diabetes. Genetics was a prominent theme in interviewees’ discussions of risk factors for the disease. Overall, genetics was mentioned as a cause of diabetes by 34 out of 53 interviewees (64%), and the prevalence of this answer was similar among past research participants and non-participants (67% and 62%, respectively). Some of the interviewees who mentioned this factor felt their genetic makeup inevitably meant they would develop diabetes. For example, Ann said:

From what they’ve found in their research, they say it’s hereditary, and they say that a lot of our people, a lot of us have diabetes, and so I don’t know if it’s our lifestyle. Is it in our genes? What is it? I don’t know, but for my own personal self, I know that I’ve gained a lot of weight, and I know that has to do a lot with it. … But then again, my mom had diabetes and my brother had diabetes. … I have one brother and one sister and a father, and they have diabetes, so, yeah … I turned 60, and I’ve just been diagnosed not too long ago with diabetes, and my other family members have been diagnosed way, way, way younger. And I always knew, you know, one of these days I’m going to be diagnosed with diabetes also, because I believed it when they said it runs in your family, in your genes.

Ann’s comments demonstrate that healthcare providers’ and researchers’ comments about genetic risk factors can have a major impact on how tribal members perceive their ability to prevent diabetes.

Several interviewees (22%) felt fatalistic about developing diabetes because Native Americans were an ethnic group labeled at risk for the disease. These interviewees often felt helpless and frustrated in the face of the diabetes epidemic. For instance, when I asked Justin how he felt about the high prevalence of diabetes in Native American communities, he said, ‘That was depressing. It makes you feel like “when I get diabetes”, not “if I get diabetes”. You know, if everybody else has it, well, money is I’m probably going to get it, too. It just seems like a big obstacle to tackle.’ Both Ann and Justin felt that diabetes was an inherent part of them, lying dormant in their bodies and would eventually develop.

The sense that diabetes was an integral part of life experiences for Native Americans was also expressed by Jeremiah, a 38 year-old tribal member who had recently been diagnosed with the disease. He said:

When I learned about it [the high prevalence of diabetes among Native Americans], it was troubling. It was scary, to be frank about it. I guess knowing that I’m Indian, that there’s—well, it just seemed like there was a good chance that I was going to get it [diabetes], that it would develop. It was unnerving before I was diagnosed, and I can see that there’s that—there’s a fear, I think, in most Indians that know about it. It’s almost become a social phenomenon of acceptance. I think that when I talk to people, regardless of their education or background, that—that it’s almost a part of growing up, that there’s just a good chance [they will get diabetes]. I don’t necessarily believe that it needs to be there … I think it’s preventable.

Jeremiah’s comments demonstrate that being labeled at risk for diabetes is part of the fabric of everyday life for some community members. It is ‘a part of growing up’ as a Native American. The connection between diabetes and Native American identity is not just felt in Southwest tribal communities. In an ethnographic study conducted with Dakota Indians, Lang (2006a: 57) writes that individuals asked about their perspectives on diabetes commented ‘on Dakota culture, history, and identity’. The Yurok Indian informants in Ferreira’s (2006: 97) study similarly thought it was futile to eat a healthy diet or exercise because they had ‘bad blood’ and diabetes was ‘in their blood’.

Community members interpret their risk of diabetes both as individuals and collectively as Native Americans. These two ways of categorizing risk may have different impacts on the degree to which tribal members identify with an ‘at risk’ label at all. For interviewees like Ellen, couching the risk of diabetes in terms of ethnic group membership caused the disease to seem removed from an individual’s health related behaviors. Community members’ perspectives on being labeled at risk for diabetes as an ethnic group also reflect broader narratives about Native American identity and history, as is discussed in the next section.

‘Weak genes’ and ‘survival genes’

Tribal members move fluidly between individual and group risk in their accounts of being ‘genetically at risk’ for diabetes. For example, Dakota Indians in Lang’s studies held varied perspectives on what caused diabetes for individuals rather than the tribe. Lang writes, ‘Dakota deliberations about … diabetes … often vary in their “tellings”, so that statements of “collective autobiography” may be juxtaposed with idiosyncratic [individual] considerations regarding etiology, illness experience, and efficacy of treatments’ (Lang, 2006a: 57). Dakota explanations for their collective risk of developing diabetes centered on the history of contact between the tribe and non-Native Americans (i.e. Europeans and Euro-Americans). Similarly, in the study reported here, community members’ narratives about genetic risk for diabetes formed a schema through which broader stories about the tribe’s history and present were told. Community members have different ways of constructing the tribe’s ‘collective autobiography’ (Lang, 2006a: 57), as is evident in their diverse interpretations of the thrifty genotype hypothesis.

The thrifty genotype hypothesis was described by 25 percent of interviewees, and was mentioned with similar frequency both by those who had participated in previous research studies (19 percent) and those who had not (31 percent). All interviewees who discussed the thrifty genotype hypothesis introduced the topic spontaneously—the interviewer did not explicitly asked about it. For example, when I asked Robert what he thought caused diabetes, he said:

A lot of the research that I’ve read is that the gene that we have—I think they call it the thrifty gene … that gene is keeping us from losing weight. The types of sugars that we eat, refined sugars, are so fast through your system that they overload [it]. A lot of the traditional foods that we had were really gelatinous. … Plus, we also ate lean meats, a lot of vegetables, and our whole diet was changed.

Robert specifically named ‘the thrifty gene’, while other interviewees used different names to describe this ‘gene’, calling it ‘the starvation gene’, the ‘fat gene’, and the ‘survival gene’. As is reflected in these different names, interviewees interpreted the thrifty genotype hypothesis in diverse ways. Some described ‘the gene’ without attaching a specific label to it, as Jane did in explaining her ideas about why Native Americans have a high prevalence of diabetes:

From what I’ve read and heard, I guess it’s a gene that, you know, way back when we were really active and going back to the diet that we had. They [tribal members] were active, they roamed a lot to different areas and they don’t do that anymore. And this gene, you know, it’s just not—what we’re feeding it, or what we’re doing now, doesn’t mix with the gene and the gene is still thinking we’re skinny, you know, wants to be skinny, and we’re not. We’re not living like the way we did before.

For most interviewees who discussed the ‘thrifty gene’, it was one factor among many that caused diabetes. Most of these community members explained that modern sedentary lifestyles and high-fat diets did not interact well with the ‘gene’, and the combination of these factors increased the likelihood that Native Americans would develop diabetes.

Notably, genetics researchers have found it difficult to isolate the specific genes related to type 2 diabetes. Until recently, few genes had been conclusively identified as underlying the disease. With the recent advent of genome-wide association studies (GWAS), 40 genes have been found to be associated with type 2 diabetes, but these genes only account for 10% of the overall genetic component to the disease (Hakonarson and Grant, 2011). Thus, type 2 diabetes has a multifactorial etiology that stems from a combination of environmental and genetic factors, and the genetic component itself is still not well characterized. Tribal members whose perspectives are reported here used the ‘thrifty gene’ and their own synonyms for it (‘weak genes’, ‘survival genes’, etc.) as metaphors to describe a complex process that resulted in the current epidemic of type 2 diabetes. This process involved rapid historical changes and some tribal members expressed a sense of collective vulnerability to these changes.

The loss of ‘traditional’ foods and lifestyles was a key part of community members’ diabetes risk narratives. Community members had diverse definitions of ‘tradition’, but some of the most common elements were songs, ceremonies, language, and foods. Concerns about the loss of traditions and efforts to revitalize them are important parts of everyday life in the community. The tribal government has an active program aimed at renewing traditions, including language classes and a community garden that grows and distributes traditional tribal crops to community members. The tribal members who maintain the garden frequently can be found at community events, such as health fairs, where they offer samples of traditionally cooked food along with recipes and health tips. Thus, community members’ desire to revitalize traditions is inextricably connected to their quest to defeat the diabetes epidemic and to maintain a distinct tribal identity. Notions of ‘tradition’, both related to food and other activities, cannot be separated from tribal members’ perceptions of what diabetes is and what the disease represents for their people.

According to Lang (2006a: 62), ‘traditional’ food is a concept used by Native Americans to sharpen the boundary between them and non-Native Americans. Like community members included in the study reported here, Lang’s Dakota Indian informants described a deviation from traditional foodways and lifestyles when explaining the increased prevalence of diabetes among their tribe. Lang (2006a: 62) writes, ‘[f]oods—as they are linked to aspects of health and illness—provided a rich imagery for demarcating cultural boundaries: the disjunction of a “way back” past with present, and also between Dakota-non-Dakota, between Dakota-EuroAmerican.’ As in Lang’s report, tribal members in this study frequently brought up the theme of traditional foods and lifestyles when distinguishing between their tribe’s present and historical circumstances. Diseases other than diabetes have also been linked to the loss of traditions in Native American communities. For example, in Diane Weiner’s (1999: 62) study of ‘cancer talk’ among Native Americans in Southern California, community members said that women who did not perform ‘rituals’ associated with ‘tribal postpartum health practices’ were more likely to have cancer in their later years (1999: 62). Thus, in their narratives about disease risk, community members may express anxieties related to losing a unique tribal identity.

For many tribal members, the loss of traditional lifestyles resulting from contact with non-Native Americans represents a relatively sudden change—a rupture in the tribe’s history. According to a few interviewees, the diabetes epidemic was caused by an inability of Native American bodies to keep up with the pace of change in diet and lifestyle. Although only a minority of interviewees expressed this perspective, the way they talked about genetic risk was striking. In explaining why Native Americans have a high prevalence of diabetes, these interviewees stated that their genes made Native Americans ‘weak’ or not well ‘adapted’ to modern diets and environments, when compared with other ethnic groups. Exemplary quotes from two of these interviewees follow:

Brian:

Well, I think it was that we were adapted to our environment, and that environment being very much the same for thousands of years and our bodies stored that fat or had a certain way of burning that fat or whatever. There’s a certain genetic makeup we have that helped us adapt to that environment, but now because of the modern days, that environment no longer exists, and our bodies aren’t maybe adapting as well as they could have or should have.

Rebecca:

There’s a theory that when we were so healthy, we had crops, we ate off the land, and had very lean jackrabbits to eat. And [then] the [river] water was diverted and we started relying on staples like flour and other things that we learned from the settlers that came through. I think our bodies could not– I think there was such a drastic change. That’s one of the theories, and there’s something about storing up because of the long winters. We’re almost like an animal storing up our fat to get us through the long winters, and I think that eventually turned into, you know, a bad thing … I kind of think that we have very weak health genes. I sat and watched my uncle. I had a red-headed Irish uncle who–my dad and he drank. You know, they drank the same, but my dad died at 47, and he was still alive at his late 60s. I thought, ‘We can’t drink like the non-Indian man can. Our bodies just—our body can’t take it.’

For community members who raised the theme of adaptation, diabetes was caused by a mismatch between Native Americans’ genes and modern environments. To them, the unhealthy food and related environment alone were not to blame for diabetes. The inability of Native American bodies to ‘process’ modern foods and alcohol made it difficult to avoid the disease.

These interviewees expressed a sense of vulnerability in the face of rapid historical changes that occurred in Native American communities. The complex history of Native Americans includes many losses, including losses of land, language, and even of family ties due to federal policies of removing Native American children from their communities and sending them to boarding schools or non-Native American foster homes (Thornton, 1987; Trafzer et al., 2006). In the above quotes from interviewees, a sense of collective tribal vulnerability is mapped onto ‘our bodies’, which they felt had not been able to cope with rapid historical changes in the tribe’s physical environment and lifestyle. Powerful historical changes are nearly impossible to reverse, according to the perspective of these tribal members and others quoted above who expressed feelings of inevitability about developing diabetes (e.g. Justin’s comments about ‘when I get diabetes, not if I get diabetes’.) Thus, interviewees’ comments about their ‘genes’ and ‘bodies’ are linked to their narratives about the collective and painful history of their tribe. Their references to ‘our bodies’ and shared ‘genes’ also reveal their view that tribal members share a collective ethnic identity based in their bodies/genes. Ethnic identities are complex, and the boundaries of ethnic groups are often difficult to define (Brubaker, 2004). Ethnic and racial identities are sometimes used to define study groups in biomedical research (Montoya, 2011), and these identity categories have also been linked in the popular media to genetic differences (Gladwell, 1998). However, ethnicity/race and genetic makeup actually do not neatly correlate with each other: genetics researchers have found that there is more variation in human genomes within ‘racial’ groups than there is between such groups (Collins, 2004; Royal and Dunston, 2004).

The different names and descriptions interviewees gave to the gene(s) they believe cause diabetes reveal diverse interpretations of the thrifty genotype hypothesis. Those interviewees who referred to a ‘fat gene’ or ‘weak health genes’ may have internalized the idea that Native Americans are genetically more susceptible to diabetes than other ethnic groups. In their writings today, most scientists do not intend to imply that particular ethnic or ‘racial’ groups are genetically ‘weaker’ than other groups. However, as noted above, scientific theories can take on a life of their own in the popular imagination. It may be helpful for researchers working with ethnic minority groups to understand how past scientific research has shaped these groups’ self-perceptions.

Group self-perceptions may vary within a community as well. The thrifty genotype hypothesis was interpreted by some interviewees to mean that Native Americans are vulnerable in the face of rapid historical change, while others viewed the ‘thrifty gene’ as evidence of Native American resilience. This latter group of interviewees referred to a ‘survival gene’ and described their pride in how Native Americans have historically survived in harsh environments. Interestingly, these interviewees also identified themselves as ‘traditional people’, meaning that they broadly adhered to Native American ‘traditions’. These interviewees took a distinctly positive view of the ‘thrifty gene’:

Christopher:

The only thing that I can deal with when I think about it [the high prevalence of diabetes among Native Americans] is wanting to study about the genetics, the gene that we have …. That survival gene, when the body converts carbohydrates or something into fats, and we store fat. The body stores fat because the lean times, they’re supposed to come at this time of the year before everything starts growing again. The later months, like the springtime, were actually the worst times because that’s when all the food grains are used up, so your body automatically starts saving all the fat. The body genetically still has that memory. I believe that is so because of the fact that at certain times of the year, your body puts on a certain amount of layer of fat because of the way the weather is and the body’s wisdom. That is really traditional among Native people, the same everywhere. So, for us, it’s just that this is what happens. We’re not going through those lean times anymore because we always have McDonald’s around. We never go through those lean times like we did before in those survival days.

Samantha:

It [the high prevalence of diabetes among Native Americans] tells me that we have a very specific gene pool. It’s like an identifier. It says that we have a challenge. Honestly, it made me—I think it speaks to how we were able to survive here. I’m not sure exactly how, but being genetically different is—tells you a lot. I think if we had to—everybody uses their genes to help you to survive. If ours are so unique that we’re now dealing with something very horrible because of the way our body processes food, then it says there must be something great about our genes that helped us to survive. And it just makes it more of a challenge for me not to get diabetic.

As is evident in tribal members’ narratives, they have different interpretations of the thrifty genotype hypothesis and the complex historical and sociopolitical factors underpinning the diabetes epidemic. Tribal members expressed their view of the community through genetic metaphors such as ‘survival gene’. Christopher, Samantha, and other tribal members with similar perspectives focused on the inherent strength and resilience of their people when facing historical challenges.

As originally conceived of by Neel, the thrifty genotype hypothesis was certainly about more than genetics—it dealt with the interaction between genetic predisposition and rapidly changing environments and lifestyles. However, once scientific hypotheses are published, they take on a life of their own: community members construct stories about themselves that employ scientists’ concepts in diverse and unexpected ways. For tribal members in the community described here, the thrifty genotype hypothesis can connote either ‘weakness’ or ‘strength/survival.’ In an ethnographic study conducted with the Mushkegowuk Cree community in Canada, Sylvia Abonyi (2001) also found that tribal members interpreted the ‘thrifty gene’ hypothesis in divergent ways. Some Cree tribal members felt that genetic predisposition meant diabetes was now a part of ‘normal aging’, while others interpreted the ‘thrifty genotype’ hypothesis as underscoring the importance of ‘traditional’ lifeways (Abonyi, 2001).

The people I interviewed stated that they heard about the thrifty genotype hypothesis from a number of sources, including researchers, healthcare providers, and media reports. It is likely that various interpretations of the thrifty genotype hypothesis permeated the community from these diverse sources, and that tribal members also discussed the hypothesis with one another. Early biomedical research studies proposing the thrifty genotype hypothesis were conducted decades before my interviews, and so I could not directly observe the communications between previous biomedical researchers and tribal members. During my fieldwork, neither biomedical researchers nor diabetes educators discussed the thrifty genotype hypothesis in public presentations. It is evident, however, that the thrifty genotype hypothesis has had staying power in the community, perhaps because it provides a compelling framework for some tribal members to connect the high prevalence of diabetes to their tribe’s recent history.

Thus, the thrifty genotype hypothesis has become a part of Indigenous peoples’ narratives about diabetes in many nations, including the U.S., Canada, Australia, and New Zealand (Fee, 2006). The hypothesis may have been popularized because it suggests an inherent difference between racial groups, according to Fee (2006: 2992). She writes, ‘[w]hat is most striking about “the thrifty genotype” is how a rather unclear scientific hypothesis was transformed into a clearcut racializing account that is now a popular and free-floating ‘explanation’ for the high incidence of diabetes among Aboriginal peoples’ (2006: 2990). Indigenous peoples’ own interpretations of the thrifty genotype hypothesis could also be viewed as part of a larger narrative about the preservation of group identities distinct from those of other ethnic groups. For example, tribal members’ comments above about the ‘survival’ of their ancestors in challenging environments demonstrate pride in their community’s collective history and concern about its collective future. There also is a broader concern throughout the community with the survival of its distinct Native American identity, as is evident in the multifaceted and active cultural preservation program sponsored by the tribal government. Discussions about the etiology of diabetes in the community also reflect larger collective concerns about tribal survival.

In their narratives about genetic risk for disease, members of other ethnic groups that have been historically marginalized or persecuted also express concerns about group survival. For example, preventive genetic testing for Tay–Sachs disease is linked to self-preservation for Jewish communities in the United States, according to Wailoo and Pemberton (2006: 16). They write, ‘genetic risk can become entangled with the survival of communities’ (p. 4). Individuals and groups actively respond to being labeled ‘genetically at risk’ for a disease in many ways, one of which is to seek out opportunities for participation in research studies, as I discuss below.

Research as a tool for coping with diabetes

Community members’ diverse interpretations of the thrifty genotype hypothesis could be considered a form of ‘situated knowledge’. Understanding the particular forms of ‘situated knowledge’ expressed by tribal members provides insight into the powerful social and political implications of the thrifty genotype hypothesis. That hypothesis can be construed as reflecting either Native Americans’ genetic strength or weakness, and how that hypothesis is viewed can influence how community members see themselves and their ability to prevent diabetes (or not). Interestingly, some tribal members felt research studies provided tools that helped them cope with diabetes.

Interviewees generally felt that recent medical/genetics research studies on their community had given them helpful knowledge about how to prevent and manage diabetes. Although earlier studies (and the thrifty genotype hypothesis in particular) caused some community members to feel fatalistic about diabetes, more recent studies have become an important part of educational efforts which emphasize that tribal members can prevent the disease. During my time in the community, health researchers often gave presentations on prevention and management of diabetes, volunteered in tribal health clinics, and served as clinical consultants for tribal health educators. Researchers also participated informally in community activities, such as regularly attending disease-based support groups in order to answer questions. Through these activities, as well as though the studies they conducted, researchers contributed to the broader conversation in the community about genetic risk for disease.

Recent studies were viewed by some interviewees as a basis for helping them to ‘adapt’ to the modern world, even when they felt their genes had not done so. For example, Matthew, who had participated in a diabetes prevention study, said:

I heard many years ago, before I was even part of the study that it [the cause of diabetes in the community] was the change of lifestyle, the surrounding [of the reservation] by the neighboring cities … changing that whole lifestyle of how people lived. That was some time ago, and I think that people never really learned how to adapt to that. That’s why the research right now, it kinda tells you how to adapt to that. I mean, everything that’s around us, the fast food that you can get and all the foods that are available to us that they probably didn’t eat a hundred years ago—if you’re gonna eat that food, you need to do it wisely.

Similarly, in another section of the interview, when I asked Samantha (who is also a Tribal Council member) what she thought were good reasons to do research on diabetes in the community, she responded, ‘[m]aking a difference in how we adapt to the modern world, modern conveniences, the food that we have now, to survive. I think research will help us to survive. That’s—I think that’s the main reason to do it. And to be happy.’ Samantha hoped that such research would strengthen and help to ensure a bright future for the tribal community.

This sentiment was also expressed by other Tribal Council members in interviews and everyday conversations. Tribal leaders often said that participating in the research was an ‘investment’ in the tribe’s future. Based on this perspective, the Tribal Council formed a partnership with a group of medical/genetic researchers to conduct diabetes studies in the community. During my fieldwork, the tribe and researchers formalized their partnership, in which the tribe was named a ‘co-Principal Investigator’ and treated as an equal partner for all of the planned phases of future research. By taking control of this research, tribal leaders attempted to shape how the history of the tribe was written in relation to theories about disease origins, such as the thrifty genotype hypothesis. They also tried to create a healthier future for the tribe by incorporating research into a larger strategy for addressing the diabetes epidemic. This strategy included an active tribal diabetes prevention program with diet-education and fitness centers.

According to Novas and Rose (2000), individuals who are labeled ‘genetically at risk’ for disease sometimes cope by seeking out opportunities to participate in medical/genetics research. These authors write that individuals labeled at risk for Huntington’s disease ‘become active in the shaping of the enterprise of science … . [This] often implies … a willingness to take part in experimental clinical trials for potential therapies to cure HD [Huntington’s disease]. People do not passively await the development of new treatments: they come to have an active stake in the development of biomedicine’ (Novas and Rose, 2000: 22). Ethnic groups labeled ‘genetically at risk’ can react the same way. As noted earlier, Native American tribes are increasingly seeking opportunities to participate in diabetes studies, but only on their own terms. Historically, studies about the thrifty genotype hypothesis caused some tribal members to feel less in control of their risk for developing diabetes. However, future research conducted in collaboration with tribal communities has the potential to have more beneficial implications.

Conclusion

Tribal members interviewed for this study reacted in diverse ways to being labeled ‘genetically at risk’ for diabetes. Their comments revealed an ongoing dialogue within the community: while some individuals felt fatalistic about diabetes, others believed they could prevent it. The diversity of community members’ perspectives was also evident in the different names they used to describe the thrifty genotype. These labels ranged from ‘weak genes’ to ‘survival genes’. The interviewees who used this latter term self-identified as ‘traditional people’ who were proud of their tribe’s heritage and participated actively in community efforts to preserve and revitalize traditional ceremonies, songs, language, and life-ways. These interviewees and other ‘traditional’ community members often spoke about the strength and resilience of their tribe and Native Americans more generally. Their perspectives demonstrate that research on the genetic basis for diabetes can connote strength in a population, rather than just susceptibility for disease.

Individuals’ perceptions about their genetic or innate predispositions can have significant and complex impacts on behavior, even outside of health-related domains. The belief that innate predispositions determine outcomes can cause individuals to conclude their own efforts are futile. For example, Carol Dweck (2007) found that schoolchildren who believed academic success was based on innate intelligence were less likely to try to excel in school than children who thought success resulted from their own efforts. However, in other cases, an emphasis on genetics/predispositions may spur individuals to action. Commenting on the rise of genetic testing in biomedicine, Novas and Rose (2000: 2) write, ‘Re-cataloguing illness and pathologies along a genetic axis does not generate fatalism. On the contrary, it creates an obligation to act in the present in relation to the potential futures that now come into view’. Novas and Rose (2000: 3) theorize that a new category of ‘genetic responsibility’ has accompanied the rise of genetic risk labeling. Individuals testing positive for single gene disorders such as Huntington’s disease face increased responsibilities related to their families’ futures, such as having to plan financially for possible health problems and making decisions about whether or not to have children (2000: 3). Multifactorial diseases, such as type 2 diabetes, cancer, and heart disease, whose genetics are not presently understood, present different dilemmas for individuals who are identified as being ‘at risk’ for those diseases. In contrast to Huntington’s disease, these chronic diseases have complex etiologies involving a combination of genetic risk and lifestyle factors. For such diseases, the notion of ‘genetic responsibility’ can include modifying health behaviors such as diet or exercise.

However, individuals labeled ‘at risk’ for chronic diseases can have complex and diverse reactions. As noted above, only some of the interviewees in this study felt motivated to change their behavior as a result of being labeled at risk for diabetes. Others felt that genetic risk factors made it difficult for them to prevent the disease. Given that some community members felt a sense of fatalism about diabetes and genetics, it may be useful for future research and education efforts to highlight individuals’ power to change their health-related behaviors, regardless of genetic factors. Healthcare providers and researchers have an important role to play in how community members interpret their risk for diabetes. As is evident in Ann’s comments above, researchers’ statements that diabetes is ‘in your genes’ can cause community members to believe that developing the disease is inevitable. Furthermore, the potential impact of medical/genetics research on tribal members is also highlighted by some interviewees’ comments that the findings from such research can help them to ‘adapt’ to the modern world.

To meet these interviewees’ expectations, discussions of research findings will need to emphasize tribal members’ ‘adaptive’ strengths and capabilities. In critiquing epidemiological studies of Canadian Aboriginal communities, O’Neil, Reading, and Leader (1998) make a similar argument. They call for a new approach to epidemiology that ‘contributes to the production of knowledge about Aboriginal communities that is liberating rather than repressive’ (O’Neil et al., 1998: 230). These authors rightly point out that biomedical research studies can stigmatize Aboriginal communities: ‘Epidemiological knowledge constructs an understanding of Aboriginal society that reinforces unequal power relationships; in other words, an image of sick, disorganized communities can be used to justify paternalism and dependency’ (1998: 230). There is a long and challenging history of health research in Native American communities. Despite very good intentions on the part of researchers, a number of past studies on mental health, alcohol use, and violence have stigmatized Native American communities. The ‘Barrow Alcohol Study’ is one well-known example (Foulks, 1989). Medical/genetics research thus can have powerful political and social implications for communities, and these implications feed into a much older history, even though technologies of genetic testing are relatively new.

Some Native American scholars have recently advocated a ‘strengths-based approach’, meaning that researchers should focus on tribal communities’ strengths in order to help them create a sense of wellness (Kana’iaupuni, 2005). As noted earlier, collaborative research is becoming more common in health fields as researchers work to involve communities as full partners throughout all phases of a study (Chrisman et al., 1999; Macaulay et al., 2006). Collaborative approaches have also become more common in anthropology (Atalay, 2006; Rappaport, 2005). A collaborative approach may yield a ‘strengths-based’ analysis because it involves communities in defining research questions and interpreting data. For example, the tribe included in the study reported here sought to invest in and strengthen its own future through engaging in a partnership with a medical/genetics research group.

Through stories they told about their genetic risk for diabetes, community members constructed broader narratives about their tribe’s history and their hopes for its future. Tribal members’ diverse interpretations of the thrifty genotype hypothesis—as well as their more general explanations about what causes type 2 diabetes—reflected their perspectives on the historical interactions between the tribe and non-Native Americans. Their anxieties about the loss of ‘traditions’ revealed tribal members’ grief about a painful history during which the tribe’s distinctiveness as a community was threatened. Tribal members’ efforts to revitalize ‘traditions’ and to use research as a tool to help them ‘adapt’ to today’s world demonstrated their strong vision for the community’s survival in the future. The quest for survival also colors other ethnic groups’ experiences with genetics risk labeling. For example, historical persecution and concerns about future group survival influenced how African Americans and American Jews related to their genetic risks for sickle cell disease and Tay–Sachs disease, respectively (Wailoo and Pemberton, 2006: 34).

Different groups with particular histories relate to genetic risk labeling in diverse ways. Collecting these different perspectives, or ‘situated knowledges’ about genetic risk, is important for understanding the role of genetics in today’s world. In an era of genomic science, ‘risk groups’ for chronic diseases such as diabetes, heart disease, and cancer, will continue to be identified by researchers, and are likely to be delineated along racial or ethnic lines. The reactions of the groups labeled ‘genetically at risk’ are critical for the success (or failure) of disease prevention and treatment efforts. The stated goal of current medical/genetics research, like that of the medical research that preceded it, is to improve human health and diminish suffering from disease. Accomplishing this goal requires that communities targeted with messages of genetic risk also receive constructive ideas about how to address their ostensible risks for disease.

Footnotes

Acknowledgements

I am deeply grateful to the tribal members who participated in interviews as well as the Tribal Council and the Tribal Department of Health and Human Services for their support. I thank Dr Bradley Stoner, Dr Glenn Stone, Dr Peter Benson, Dr Shanti Parikh, and the anonymous peer reviewers for this journal for providing helpful comments on previous drafts of this paper.

Funding

Fieldwork described in this article was funded by a Doctoral Dissertation Improvement Grant from the National Science Foundation (Award ID: 0644516) and the Wenner-Gren Foundation (Grant Number: 7649).

Biographical note

Puneet Chawla Sahota is an MD candidate at Washington University in St Louis. She is also a cultural anthropologist, and received her PhD in 2009 from Washington University in St Louis. Her dissertation research examined the relationship between a Southwest American Indian tribe and biomedical/genetics research, including ethical, political, and cultural issues. Her work has been published in Diabetes Care, Journal of Clinical Psychiatry, and American Indian Culture and Research Journal. The National Congress of American Indians Policy Research Center recently published her policy papers on healthcare reform and research regulation in American Indian/Alaska Native communities.

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