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2010 Presidential Address: Culture: The Silent Language Geneticists Must Learn— Genetic Research with Indigenous Populations

2011; Elsevier BV; Volume: 88; Issue: 3 Linguagem: Inglês

10.1016/j.ajhg.2011.02.014

1537-6605

Roderick R. McInnes,

Indigenous Studies and Ecology

Fellow geneticists and genomicists from around the world, I welcome you to the 60th annual meeting of the American Society of Human Genetics. I wish to thank you for the privilege of being the President of this increasingly important, international, and multicultural society during the past year. The subject of my address, “Culture: The Silent Language Geneticists Must Learn,” occurred to me when I recently discovered a reprint of a favorite book, The Silent Language, by Edward T. Hall, first published in 1959.1Hall E.T. The Silent Language. Anchor Books, New York1990Google Scholar The silent language referred to in the title is culture. He wrote that “…cultural patterns are literally unique, and therefore they are not universal … Consequently, difficulties in intercultural communication are seldom seen for what they are.” As geneticists and genomicists have reached out to study the world's populations, particularly indigenous populations, the opportunities for cultural misunderstanding have grown. In some instances, remarkable progress has been made, both in doing research with indigenous communities and doing it in ways welcomed by them. In others, the cultural perspective of the researchers, and their more powerful cultural position in society, has prevented them from fully considering the priorities of the study population, well-intended research could not be undertaken or completed, and the population under study has been left with a sense of mistrust, stigmatization, or weakened political authority.2Manson S.M. Barrow alcohol study: Emphasis on its ethical and procedural aspects.Am. Indian Alsk. Native Ment. Health Res. 1989; 2: 5-6Crossref Google Scholar, 3Dukepoo F.C. It's more than the Human Genome Diversity Project. Politics and the life sciences.The Journal of the Association for Politics and the Life Sciences. 1999; 18: 293-297PubMed Google Scholar Rebecca Tsosie has used the term “cultural harm” to refer to the negative impact, for Native Americans, of many of their experiences with genetics researchers,4Tsosie R. Cultural challenges to biotechnology: Native American genetic resources and the concept of cultural harm.J. Law Med. Ethics. 2007; 35: 396-411Crossref PubMed Scopus (64) Google Scholar and examples of such unwanted outcomes were reported in AJHG in 1998.5Juengst E.T. Group identity and human diversity: Keeping biology straight from culture.Am. J. Hum. Genet. 1998; 63: 673-677Abstract Full Text Full Text PDF PubMed Scopus (62) Google Scholar Consequently, Hall's observation about the potential for difficulties in intercultural communications is becoming increasingly relevant to indigenous communities around the world and to research studies with these communities by members of the American Society of Human Genetics. The subtlety of cultural differences is well illustrated by a European tourist visiting North America for the first time. On touring the continent, she might gain the impression that Canada and the United States have nearly identical cultures—the buildings look much the same, people dress similarly, talk the same language, have the same stores, and so on. To a tourist, Toronto and Chicago might seem to belong to a single quite homogeneous culture. But underneath this veneer of cultural similarity, there are very significant differences. Two tongue-in-cheek examples refer to some of these distinctions. One example is a statement by the wonderful Canadian novelist Margaret Atwood: “When Americans win things such as Miss America crowns, Oscars, murder trial verdicts, and literary prizes, they weep and thank people. When Canadians are awarded things, they look behind them to see if it was meant for somebody else.” A second joke alludes to other Canadian-American cultural differences. “Question: What's the definition of a Canadian? Answer: “An unarmed North American with health insurance.” A geneticist's first impression of an indigenous culture is similar to viewing an iceberg: what you see isn't what you get. The obvious differences—the visible one-seventh of the iceberg above the water, are only a small fraction of all the distinct features of the indigenous culture. These surface features poorly represent the larger substratum of profound differences hidden beneath the surface. My first goal today is to increase your awareness of the perspectives and concerns of indigenous populations regarding genetic research. I use the word “populations” because there is often remarkable uniformity amongst indigenous populations from around the world, with respect to the issues I will discuss.6Dodson M. Williamson R. Indigenous peoples and the morality of the Human Genome Diversity Project.J. Med. Ethics. 1999; 25: 204-208Crossref PubMed Scopus (61) Google Scholar, 7Mead, A.T.P., and Ratuva, S. (2007). Pacific Genes & Life Patents: Pacific Indigenous Experiences & Analysis of the Commodification & Ownership of Life. (Wellington, New Zealand: United Nations University Institute of Advanced Studies and Call of the Earth [Llamado de la Tierra]). http://calloftheearth.wordpress.com/publications/.Google Scholar Perhaps the predominant reality for indigenous populations, with respect to research, is the fact that we, geneticists from western-oriented cultures, are from the dominant culture. We have greater economic, political, and scientific knowledge. This fact generally permeates almost all interactions between researchers and indigenous populations. As exemplified by the experience of Mohatt and his colleagues in conducting research on sobriety with Alaskan natives, the researcher must be aware of the “power differential between those who traditionally control the research and those who are the researched” and must avoid unconsciously sending the “… message that the researcher, as someone holding specialized knowledge and language, could tell the community what was right, thereby denigrating their experience.”8Mohatt G.V. Hazel K.L. Allen J. Stachelrodt M. Hensel C. Fath R. Unheard Alaska: Culturally anchored participatory action research on sobriety with Alaska Natives.Am. J. Community Psychol. 2004; 33: 263-273Crossref PubMed Scopus (102) Google Scholar The power differential may be unwittingly and unfavorably tilted against the representatives of the indigenous culture before even a word has been spoken. My second goal is to present examples of both successful and unsuccessful research studies of indigenous populations and to consider why some succeeded and others failed. Third, I will emphasize that the culture, priorities, values, and jurisdiction of the indigenous community must be respected and that, in successful studies, they have been. The take-home message is that we must do “culturally competent”9Foster M.W. Sharp R.R. Genetic research and culturally specific risks: One size does not fit all.Trends Genet. 2000; 16: 93-95Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar, 10Canadian Institutes of Health Research. (2010). CIHR Guidelines for Health Research Involving Aboriginal People. http://www.cihr-irsc.gc.ca/e/29134.html.Google Scholar, 11Cochran P.A. Marshall C.A. Garcia-Downing C. Kendall E. Cook D. McCubbin L. Gover R.M. Indigenous ways of knowing: Implications for participatory research and community.Am. J. Public Health. 2008; 98: 22-27Crossref PubMed Scopus (254) Google Scholar research, research that respects the indigenous community's beliefs, their desire for self-determination, their desire to benefit from the research, and their wish to retain intellectual property rights and ownership of samples of DNA, tissues, and body fluids. One can visualize the ideal dynamic between researchers and indigenous communities schematically: imagine that a large circle is us, the dominant culture, and that the indigenous community is a very much smaller circle within or partially within our larger culture (Figure 1). The equality of the reach and influence of the indigenous population over the whole research project can be represented by the arrows radiating out from the small central circle of the indigenous community, to the perimeter of the large circle. At this point, I would like to issue a caution: as Bartha Knoppers has pointed out, in reviewing earlier genetic studies of indigenous populations, we have to be very hesitant to judge the conduct of previous research—and previous researchers—by today's standards.12Dalton R. When two tribes go to war.Nature. 2004; 430: 500-502Crossref PubMed Scopus (58) Google Scholar Standards change rapidly, and in this area, they've changed greatly in the last 10 years. Another potential misjudgement, I believe, is that the indigenous community is anti-science. This is not the case, and I think I will be able to convince you of that. To paraphrase Debra Harry, the indigenous community is not so much anti-science as “pro-indigenous rights.”13Reardon J. “Anti-colonial genomic practice?” Learning from the Genographic Project and the Chacmool Conference.Int. J. Cult. Property. 2009; 16: 205-212Crossref Scopus (4) Google Scholar One of the first unfortunate interactions between geneticists and an indigenous population occurred in Canada and involved the Nuu-chah-nulth, a tribe whose people live on the west coast of Vancouver Island in British Columbia.14Dalton R. Tribe blasts ‘exploitation’ of blood samples.Nature. 2002; 420: 111Crossref PubMed Scopus (38) Google Scholar, 15Pullman D. Arbour L. Genetic Research and Culture: Where Does the Offense Lie?.in: Young J.O. The ethics of cultural appropriation. Wiley-Blackwell, Hoboken, NJ2009: 115-139Crossref Scopus (11) Google Scholar The Nuu-chah-nulth have a high frequency of rheumatoid arthritis. In the early 1980s, Dr. R. H. Ward, at that time at the University of British Columbia, approached the tribal leaders about undertaking a search for HLA alleles that might be linked to the arthritis in this tribe. A study of 900 participants failed to demonstrate linkage. These studies were conducted according to the ethical guidelines of the time. For example, both the leaders of the community and every individual who was involved offered their informed consent. The problems arose later. Between 1985 and up to 2000, the DNA was moved to other research centres without the knowledge or consent of the tribe and was used for research that hadn't been authorized in the original agreement between Dr. Ward and the tribe. Such misuse of DNA samples for studies outside the original research question has been a recurrent problem for indigenous populations.16Lee S.S. Bolnick D.A. Duster T. Ossorio P. Tallbear K. Genetics. The illusive gold standard in genetic ancestry testing.Science. 2009; 325: 38-39Crossref PubMed Scopus (53) Google Scholar, 17Royal C.D. Novembre J. Fullerton S.M. Goldstein D.B. Long J.C. Bamshad M.J. Clark A.G. Inferring genetic ancestry: Opportunities, challenges, and implications.Am. J. Hum. Genet. 2010; 86: 661-673Abstract Full Text Full Text PDF PubMed Scopus (159) Google Scholar The affair was drawn to the attention of the scientific community about 8 years ago in a commentary in Nature entitled, “Tribe blasts ‘exploitation’ of blood samples.”14Dalton R. Tribe blasts ‘exploitation’ of blood samples.Nature. 2002; 420: 111Crossref PubMed Scopus (38) Google Scholar Of particular concern to the Nuu-chah-nulth was the use of the samples for genetic ancestry studies, an area of genetic research that is particularly challenging to Native Americans for a variety of culturally specific reasons.17Royal C.D. Novembre J. Fullerton S.M. Goldstein D.B. Long J.C. Bamshad M.J. Clark A.G. Inferring genetic ancestry: Opportunities, challenges, and implications.Am. J. Hum. Genet. 2010; 86: 661-673Abstract Full Text Full Text PDF PubMed Scopus (159) Google Scholar, 18TallBear K. Narratives of race and indigeneity in the Genographic Project.J. Law Med. Ethics. 2007; 35: 412-424Crossref PubMed Scopus (89) Google Scholar, 19Bolnick D.A. Fullwiley D. Duster T. Cooper R.S. Fujimura J.H. Kahn J. Kaufman J.S. Marks J. Morning A. Nelson A. et al.The science and business of genetic ancestry testing.Science. 2007; 318: 399-400Crossref PubMed Scopus (189) Google Scholar The DNA was not returned to the Nuu-chah-nulth until 20 years after sampling. The perception of researchers that DNA collected for research becomes their property is actually a common problem: once the DNA is taken, if the indigenous community wants to change the rules of the game, it can be very difficult for them to recover the samples. (The experience of the Yanomamö Indians in Brazil and Venezuela illustrates the same problem,20Couzin-Frankel J. Researchers to return blood samples to the Yanomamö.Nature. 2010; 328: 1218Google Scholar but it must be noted here that allegations of misconduct against the prominent human geneticist James V. Neel, for his research on the Yanomamö, have been shown to be false). 21American Society of Human GeneticsResponse to Allegations against James V. Neel in Darkness in El Dorado, by Patrick Tierney.Am. J. Hum. Genet. 2002; 70: 1-10Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar Regrettably, the outcome for the Nuu-chah-nulth was a sense of betrayal and a loss of trust in researchers. But the tribe responded to this sense of mistrust with action. The elected chief formed a committee to establish conditions to be followed by researchers who wished to carry out research with their community. Subsequently, the Nuu-chah-nulth made important contributions to the development of the Canadian guidelines on research with indigenous populations,10Canadian Institutes of Health Research. (2010). CIHR Guidelines for Health Research Involving Aboriginal People. http://www.cihr-irsc.gc.ca/e/29134.html.Google Scholar which I will discuss later. A second illustration of the conflicts that can develop between indigenous populations and genetic researchers may be more familiar because it has recently been reported in the scientific literature.11Cochran P.A. Marshall C.A. Garcia-Downing C. Kendall E. Cook D. McCubbin L. Gover R.M. Indigenous ways of knowing: Implications for participatory research and community.Am. J. Public Health. 2008; 98: 22-27Crossref PubMed Scopus (254) Google Scholar, 22Mello M.M. Wolf L.E. The Havasupai Indian tribe case—Lessons for research involving stored biologic samples.N. Engl. J. Med. 2010; 363: 204-207Crossref PubMed Scopus (238) Google Scholar In this instance, the tribe involved was the Havasupai of Arizona, and the controversy was highlighted in a News Feature in Nature in 2004, entitled: “When two tribes go to war: Medical geneticists and isolated Native American communities afflicted by inherited diseases should have much to gain from working together. But the relationship can go sour …”12Dalton R. When two tribes go to war.Nature. 2004; 430: 500-502Crossref PubMed Scopus (58) Google Scholar. Geneticists are one of the “tribes” referred to in the title of this commentary. In this instance, the tribe approached the University of Arizona in the early 1990s to obtain insight into the very high incidence of type 2 diabetes in the Havasupai. A search for linkage to HLA loci, particularly to HLA-A2, which had been shown to be associated with type 2 diabetes in Pima Indians, was conducted, but no linkage was found. Subsequently, a freezer failure was thought to have made the DNA samples useless. But in 2000 the development of microsatellite markers made it possible to examine genetic variability in the Havasupai, despite the poor quality of the DNA. The tribe soon learned of these studies, which they had not authorized, and to which they objected. The subsequent events were contentious and unfortunate. The News Feature in Nature makes instructive reading for any geneticist who plans to conduct research with indigenous populations.12Dalton R. When two tribes go to war.Nature. 2004; 430: 500-502Crossref PubMed Scopus (58) Google Scholar All of the outcomes were bad. No insight was gained into the high incidence of diabetes, despite the fact that it occurs in a little more than a third of men and about half of the women in this population—one of the highest incidences in the world. Secondly, the tribe felt stigmatized. At least one study of genetic variability in the Havasupai was published and documented a high degree of consanguinity,23Markow T.A. Martin J.F. Inbreeding and developmental stability in a small human population.Ann. Hum. Biol. 1993; 20: 389-394Crossref PubMed Scopus (38) Google Scholar which is hardly surprising because in the early 20th century, the tribe had been reduced to only 40 men and 40 women of reproductive age—a narrow genetic bottleneck. However, the tribe felt stigmatized by the identification of the high level of consanguinity, revealed by studies they had not authorized. Tremendous negative press was generated for the University of Arizona and for the investigators. I'm sure this experience was traumatic and detoured their academic careers. The Genographic Project (see Web Resources) is another large-scale genomics project which has very much been in the news since its launch in 2005. Sponsored by the National Geographic Society and IBM, this initiative attracted negative press very quickly. The headline of an article in the New York Times on this project read “DNA Gatherers Hit Snag: Tribes Don't Trust Them.” What are the issues in this instance? If you visit the website of the Genographic Project, it looks very impressive. The aim, presented there, is “to analyze historical patterns in DNA from participants around the word, to understand human genetic roots.” A major research component—there are several—is “to obtain field research data in collaboration with indigenous and traditional peoples.” The website states that the project is to be “anonymous, non-medical, non-profit, and that the data are in the public domain.” There have been good scientific outcomes from this project. One publication arising from the project, and presented on the website, reported efforts “… to identify … male genetic traces [of the Phoenecians] in modern populations around the Mediterranean.” The work was published in The American Journal of Human Genetics in 2008.24Zalloua P.A. Platt D.E. El Sibai M. Khalife J. Makhoul N. Haber M. Xue Y. Izaabel H. Bosch E. Adams S.M. et al.Identifying genetic traces of historical expansions: Phoenician footprints in the Mediterranean.Am. J. Hum. Genet. 2008; 83: 633-642Abstract Full Text Full Text PDF PubMed Scopus (98) Google Scholar Another paper from the Genographic Project reported a novel deletion, in healthy individuals, of a region of the mitochondrial DNA molecule that had previously been thought to control replication of the molecule.25Behar D.M. Blue-Smith J. Soria-Hernanz D.F. Tzur S. Hadid Y. Bormans C. Moen A. Tyler-Smith C. Quintana-Murci L. Wells R.S. A novel 154-bp deletion in the human mitochondrial DNA control region in healthy individuals.Hum. Mutat. 2008; 29: 1387-1391Crossref PubMed Scopus (9) Google Scholar This discovery, in homoplasmic individuals in one family, challenges the idea that this is a replication control region. These two publications demonstrate that good things can arise from the Genographic Project. Given these useful outcomes of the Genographic Project, what concerns do indigenous populations have about it? In fact, the issues are quite different from the ones that have arisen from studies of particular diseases in individual tribes. For example, with respect to the statement that this is a non-profit enterprise, critics have wondered about “secondary” profit. This problem has been thoughtfully considered by Jenny Reardon, who wrote “… as the project's FAQ web page (see Web Resources) explains, ”‘Family Tree DNA [a genetic ancestry company] does have access to some of the DNA and data to assist in the analytical research.” But “… will access to these data enable Family Tree DNA to develop a new generation of ancestry tests that they can then sell?” I think this is a fair question. Reardon then asks “Who will profit economically from the films made about the Genographic Project [by the National Geographic Society]?” A second more common concern about ancestry studies in indigenous populations, such as The Genographic Project, has been expressed well by Pullman and Arbour: “[The findings of the Genographic Project could] undermine cultural narratives about a people's origins that have been held for generations or centuries and could alter perceptions of who's in and who's out of particular cultural groups.”15Pullman D. Arbour L. Genetic Research and Culture: Where Does the Offense Lie?.in: Young J.O. The ethics of cultural appropriation. Wiley-Blackwell, Hoboken, NJ2009: 115-139Crossref Scopus (11) Google Scholar A nuanced commentary on this problem has been written by Kim TallBear, a social scientist at the University of California-Berkeley and a Dakota. She wrote that, “Indigenous [peoples'] ways of understanding their origins … [are] based in particular histories, cultures, and landscapes. [The Genographic Project] is not going to tell me how I am related to my various Dakota tribal kin, the ultimate set of relations in tribal life. Nor can [The Genographic Project] tell me how we got here today, although it could tell me that I have the founding “Native American” lineage dubbed “haplogroup A.” The question of how we as Dakota got to where we are has already been answered, and the answer is not one of genetics”.18TallBear K. Narratives of race and indigeneity in the Genographic Project.J. Law Med. Ethics. 2007; 35: 412-424Crossref PubMed Scopus (89) Google Scholar You might ask whether this perspective of Native Americans, as expressed by Kim TallBear, is inconsistent with cultural beliefs held by members of the dominant culture, including most geneticists at this meeting. On the very day that I was re-reading TallBear's paper18TallBear K. Narratives of race and indigeneity in the Genographic Project.J. Law Med. Ethics. 2007; 35: 412-424Crossref PubMed Scopus (89) Google Scholar in preparation for this talk, an article entitled “Parentage is about more than DNA” appeared in a Canadian newspaper, The Globe and Mail.26Campbell, A., and Leckey, R. (2010). Parentage is about more than DNA. The Globe and Mail. http://www.theglobeandmail.com/news/opinions/opinion/parentage-is-about-more-than-dna/article1775470/Google Scholar The article begins “A woman born of a genetic sperm donation is challenging the law that prevents her from knowing her genetic father's identity.” (Let's agree to ignore the fact that one can't conceive of a “nongenetic” sperm donation!). The authors write, in what I think is a very powerful statement, that “the rhetoric of genetic connection risks erasing social bonds between parents and children. It implies that identity results from genetics. And the idea that genetic origin makes people who they are devalues the diverse means by which people form families.” Similarly, one could summarize the concepts expressed above by Kim TallBear as “Ancestry is about more than DNA.” As you can see, there's really little difference between our culture's perspective on this issue of personal identity and the perspective of indigenous populations on their tribal identity. One of the recurrent complaints of indigenous people about research is that it benefits the researchers and not the population being studied. An Alaskan Native saying perfectly captures the resentment bred of experiences like those of the Nuu-chah-nulth and the Havasupai: “Researchers are like mosquitoes; they suck your blood and leave.”11Cochran P.A. Marshall C.A. Garcia-Downing C. Kendall E. Cook D. McCubbin L. Gover R.M. Indigenous ways of knowing: Implications for participatory research and community.Am. J. Public Health. 2008; 98: 22-27Crossref PubMed Scopus (254) Google Scholar The great disconnect here is between our culture of research and the “participatory research” approach we must adopt for studies with indigenous populations, an approach that has now been advocated by many social scientists and geneticists.8Mohatt G.V. Hazel K.L. Allen J. Stachelrodt M. Hensel C. Fath R. Unheard Alaska: Culturally anchored participatory action research on sobriety with Alaska Natives.Am. J. Community Psychol. 2004; 33: 263-273Crossref PubMed Scopus (102) Google Scholar, 11Cochran P.A. Marshall C.A. Garcia-Downing C. Kendall E. Cook D. McCubbin L. Gover R.M. Indigenous ways of knowing: Implications for participatory research and community.Am. J. Public Health. 2008; 98: 22-27Crossref PubMed Scopus (254) Google Scholar, 27Foster M.W. Sharp R.R. Freeman W.L. Chino M. Bernsten D. Carter T.H. The role of community review in evaluating the risks of human genetic variation research.Am. J. Hum. Genet. 1999; 64: 1719-1727Abstract Full Text Full Text PDF PubMed Scopus (84) Google Scholar, 28Bowekaty M.B. Davis D.S. Cultural issues in genetic research with American Indian and Alaskan Native people.IRB: Ethics and Human Research. 2003; 25: 12-15Crossref PubMed Scopus (29) Google Scholar, 29Arbour L. Cook D. DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities.Community Genet. 2006; 9: 153-160Crossref PubMed Scopus (73) Google Scholar, 30Mohatt G.V. Plaetke R. Klejka J. Luick B. Lardon C. Bersamin A. Hopkins S. Dondanville M. Herron J. Boyer B. The Center for Alaska Native Health Research Study: A community-based participatory research study of obesity and chronic disease-related protective and risk factors.Int. J. Circumpolar Health. 2007; 66: 8-18Crossref PubMed Scopus (80) Google Scholar, 31Sharp R.R. Foster M.W. Grappling with groups: Protecting collective interests in biomedical research.J. Med. Philos. 2007; 32: 321-337Crossref PubMed Scopus (19) Google Scholar As pointed out to me by Laura Abour of the University of British Columbia, our investigator-driven biomedical research model is science focused, the goal being to add to the body of knowledge and hopefully help battle disease. In our model, the subjects have little voice in the research process, they waive rights of benefit sharing in general, the data and samples are “owned” by the researcher, and the results go to journals and are not specifically ever directed back to or shared with the research subjects. Many Canadian researchers realized that our “investigator-driven” paradigm had to be changed for studies with indigenous populations. The outcome was the Guidelines for Health Research Involving Aboriginal People developed by the Canadian Institutes of Health Research.10Canadian Institutes of Health Research. (2010). CIHR Guidelines for Health Research Involving Aboriginal People. http://www.cihr-irsc.gc.ca/e/29134.html.Google Scholar The community-based participatory approach outlined in these guidelines, and that all of us would be well advised to use, is exemplified by a study undertaken by Laura Arbour and her colleagues in northern British Columbia with the Gitxsan people.32Arbour L. Rezazadeh S. Eldstrom J. Weget-Simms G. Rupps R. Dyer Z. Tibbits G. Accili E. Casey B. Kmetic A. et al.A KCNQ1 V205M missense mutation causes a high rate of long QT syndrome in a First Nations community of northern British Columbia: A community-based approach to understanding the impact.Genet. Med. 2008; 10: 545-550Crossref PubMed Scopus (23) Google Scholar In the Gitxsan community, the long-QT syndrome and sudden death are very prevalent and therefore a major health priority. Community members brought this problem to the attention of university researchers. To provide advice and govern the research, the Gitxsan Health Society formed a local research advisory committee consisting of lay community members and medical personnel. Laura's studies showed that up to ∼1/100 individuals carry a Val205Met mutation in the KCNQ1 gene, which encodes one of the ion channels associated with this disease (Figure 2). This prevalence is about 50-fold greater than that found in the general population, where it affects about 1/5000 individuals. The features of the Gitxsan long-QT syndrome research that were characteristic of participatory research were that the Gitxsan initiated the research, participated in the development of the research protocol, and maintained an on-going advisory and governance role. In addition, there were tribal research assistants, the community reviewed the results with the investigators, reviewed the paper before it was submitted for publication, and agreed with the decision to use their tribal name in the publication. This successful application of participatory research is not unique. For example, the late Gerry Mohatt initiated an admirable series of investigations with Alaskan Natives, including “culturally anchored participatory action research on sobriety in Alaskan Natives.”8Mohatt G.V. Hazel K.L. Allen J. Stachelrodt M. Hensel C. Fath R. Unheard Alaska: Culturally anchored participatory action research on sobriety with Alaska Natives.Am. J. Community Psychol. 2004; 33: 263-273Crossref PubMed Scopus (102) Google Scholar Some of the key features here were the same as those employed with the Gitxsan, including, for example, the facts that Alaska Natives became coresearchers and were part of the coordinating council for the study. Particularly instructive in the report of this research was the description of the gradual realization by the researchers that their initial communications with the native community were ineffective because they were not “communicatively competent.” “Many Alaskan Natives … perceived the [initial] discourse as dominated by one-way communication … that communicated [only] the perspectives and values of the alcohol research community” and not that of the native population”8Mohatt G.V. Hazel K.L. Allen J. Stachelrodt M. Hensel C. Fath R. Unheard Alaska: Culturally anchored