Address by the President of the Circumpolar Conference

Rosemarie Kuptana President, Inuit Circumpolar Conference, Ontario, Canada

Keywords: Inuit Circumpolar Conference; Inuit; Self-determination-, Health issues; Research relationships

I am very pleased to be here to speak to The connection between indigenous self­ you about circumpolar health from an Inuit per­ determination issues and circumpolar health spective. The agenda for this tenth meeting of may not seem clear at fist. It may help if one the International Congress on Circumpolar recognizes that self-determination and sover­ Health covers a wide range of health issues vi­ eignty issues are fundamentally about power, tally important to circumpolar peoples, such as and about how power is exercised and who ex­ benefits and risks of subsistence foods, cancer ercises it over self, family, community, and na­ prevention, diabetes, alcohol abuse, traditional tion. I will try to explain from an Inuit perspec­ knowledge and healing, and environmental tive how certain power relationships have real health, to name a few. life impacts on the day-to-day lives of Inuit as As you know, Inuit are a circumpolar we seek to maintain and develop the health of people, whose territories span the northern our families and communities. I will speak to reaches of four nations: the United States power relationships between peoples and be­ (), Canada, , and Russia. The tween individuals, and I hope that my comments Inuit Circumpolar Conference (ICC) is the in­ will have some resonance in your discussions ternational organization of the approximately of the many important circumpolar health is­ 130,000 Inuit who live in these four circumpo­ sues on your agenda. lar regions. Fundamental human rights are usually un­ The principal goals of ICC are: derstood to be held by individuals. For example, • To strengthen unity among Inuit the United Nations Universal Declaration of • To promote Inuit rights and interests on an Human Rights declares that "Everyone has the international level right to a standard of living adequate for the • To develop and encourage long-term policies health and well-being of himself and of his fam­ which safeguard the environment ily, including food, clothing, housing and medi­ • To seek full and active partnership in the po­ cal care ...." 1 The topic of my address raises the litical, economic, and social development of question of whether circumpolar peoples can circumpolar regions. fully realize such individual rights without also ICC addresses many international issues of addressing our rights at the collective level to common importance to Inuit, ranging from en­ some control and decision-making power over vironmental protection and health and social the handling of health and health-related issues issues to sustainable development, resource in our communities. management, and human rights. Today, I have I will begin by briefly addressing the mean­ been asked to speak on the relationship between ing of the right to self-determination. self-c-letermination issues and health, and the The right to self-determination is a collec­ related subject of ethics and research in Native tive right and a fundamental human right held communities. by all peoples. Self-determination is usually

6 96 Circumpolar Health defined as the inalienable right of each people Inuit health professionals and Inuit commu­ to freely determine their political status and to nity leaders must be aware of such risks, to the freely pursue their economic, social, and cul­ extent they are known, and we must also take tural development.2 This right is regarded as into account the fact that science often cannot so fundamental, it is described by the United provide precise answers about risks. We are also Nations as a pre-condition to the exercise of all under an obligation to prevent needless panic other fundamental human rights. The right to or a more harmful reliance on poor quality, ex­ self-determination complements the important pensive store-bought food. To this end Inuit in principle of individual equality with the funda­ Canada have conducted some important re­ mental premise that all peoples are equal. search and policy work on the issue of commu­ In a health context, this implies a respect nication on contaminants issues in the North. for different systems of knowledge and the right Inuit have concluded that interests of arctic of a people to determine its own health priori­ peoples are best served through collaborative ties and the right to be fully involved in the ad­ communication efforts and true partnership be­ ministration and delivery of local health ser­ tween scientists, the medical community, gov­ vices. It implies a right to informed consent; to ernment, and Inuit representatives on contami­ participation in health research; and to be in­ nants issues. Other people cannot properly or formed of the results of health research con­ accurately assess the risks of Inuit lifestyles ducted in, or affecting, Inuit communities. without our participation and without some rec­ Health issues affecting individuals, fami­ ognition of indigenous knowledge systems and lies, and communities in the North are a vital indigenous health priorities. part of any self-determination agenda. Physi­ In addition to these issues that all Inuit face, cal health is central to the economic, social, and I must mention that the Inuit of the Chukotkan cultural well-being of any people. The collec­ region of Russia face serious nutritional and tive physical health of Inuit is an important other health problems resulting from the severe marker of the overall social, economic, and cul­ economic distress that followed the collapse of tural well-being of the Inuit nation and our the USSR. ICC is examining options for the power to self-determine. effective delivery of various forms of aid to help The kinds of health issues faced by Inuit address this situation. today often reflect the consequences of the so­ Inuit throughout the circumpolar North cial and economic disruption that accompanied have maintained a close relationship to the land, the colonization of our lands. For example, the sea, and the animals for thousands of years, changing diets, often due to a lack of access to and we have witnessed various changes in the traditional food sources, are producing health environment and changes in our health prob­ problems not previously experienced in great lems. Cancer is becoming a major concern, in numbers by northern peoples. all parts of the Inuit circumpolar world. As just The complexity of the health issues faced one example here in Alaska, a very serious is­ by circumpolar peoples also reflects particular sue has arisen concerning health hazards expe­ health implications of contemporary lifestyles rienced by Iniut villagers during the 1950s from outside the Arctic. Inuit must now carefully Iodine-131 radiation experiments conducted by monitor and try to prevent the growing flow of the military to determine the role of the thyroid contaminants, such as PCBs and radionuclides, gland. Military activities in other circumpolar entering our arctic environment and ultimately countries have brought the discharge of radio­ our bodies. As a consequence of various fac­ active waste and dumping of other pollutants in tors, such as military activities in the Arctic, our lands and waters with unknown effects on agricultural practices, and global industrializa­ the fish and populations on tion, we now must continually assess the bene­ which we rely. fits of country food against the risks of the con­ The existence of a growing range of pol­ taminants often found in it. lutants and contaminants entering the Arctic raises health issues that are global as well as

96 Circumpolar Health 7 circumpolar in scope. For example, DDT is used professions. For too long, circumpolar peoples by some countries in tropical climates to con­ have been "subjects" of scientific study, with trol malaria but this highly toxic substance is little opportunity to shape research priorities in finding a resting place in the arctic environment the North or even to learn in a timely and re­ and its food chain. How can we encourage the spectful way of the results of research carried development and use of safer alternatives to out on them. Within the circumpolar Inuit com­ DDT? munity, there are still doubts about the value and Contaminants issues also raise interesting accuracy of some scientific information. Both questions about our understanding of terms like the ICC and the Inuit Tapirisat of Canada have "sustainable development." We all must begin been involved in developing guidelines for ethi­ to ask: Development to sustain who and at what cal research towards improving the relationship cost to the health of other peoples? Do we not and the relevance of northern science to north­ all have a responsibility to change our lifestyles ern peoples. and forms of economic development, if neces­ This topic is addressed in a section of the sary to minimize or eliminate negative environ­ ICC publication Principles and Elements for a mental and health impacts on other peoples? Comprehensive Arctic Policy, and the Inuit Health professionals have told us repeat­ Tapirisat of Canada (ITC) has explored in some edly that very little is known about the possible depth the desirability of negotiated contractual relationship between environmental pollution relationships. Negotiated agreements can ad­ and cancers among Inuit, and yet the possibil­ dress issues about how research is done, and ity of a link between the rising cancer rates should be used in conjunction with the more tra­ among Inuit and contaminants is too often dis­ ditional approach of adhering to voluntary ethi­ missed or discounted. While lifestyle factors cal guidelines. In Canada, recent land claims such as smoking are important, Inuit at the com­ settlement agreements have provided opportu­ munity level strongly suspect that there may be nities to address some of these issues by plac­ links between rising cancer rates and the sig­ ing specific requirements on the conduct of re­ nificant presence of arctic pollutants. search. Delegates to the 1995 ICC General Assem­ In 1994, Peter Usher, a highly experienced bly in Nome expressed this deep concern by consultant working for ITC, identified several calling on ICC to host a conference on cancer key issues that Inuit communities would most that would focus on such issues. This confer­ likely need to have addressed in agreements to ence will take place in September 1997 in Nuuk, govern research relationships.3 These issues are Greenland, and will be co-sponsored by the well worth consideration by the health commu­ Greenland Homerule Government. It will pro­ nity at large. Usher identified a need for: vide an opportunity for the Inuit community and 1. Informed consent from the community and health professionals to engage in a frank dia­ individuals involved regarding at least the logue about cancer and cancer prevention in an following: the purpose of the research, its environment that is support~ ve of Inuit concerns sponsors, the person in charge, the potential and priorities. benefits and problems for the people and the Self-determination can involve power-shar­ environment, research methodology, and the ing, and this brings me to the topic of ethics and participation of and communication with research relationships. There are a growing community residents; number of beneficial partnerships between in­ 2. Respect for the privacy, dignity, cultures, tra­ digenous peoples and health professionals, and ditions, and rights of and we hope these will displace the paternalistic pat­ respect for the integrity of the environment terns that Inuit have too often been exposed to and indigenous harvesting activities; in the past. 3. Anonymity of subjects and confidentiality This is just the beginning of an evolving of information; process of equalizing the relationships between 4. Communication of research objectives, Inuit and researchers and Inuit and the health methods, findings, and interpretation

8 96 Circumpolar Health throughout the course of the planning and REFERENCES implementation of the project; 1. Article 2:'i. l Universal Declaration of Human 5. Recognition of local and traditional knowl­ Rights adopted and proclaimed by CN GA edge in all stages of research, including prob­ Resolution 2 I 7 ( l l l) of 10 December 1948. lem identification; 2. Article 1 of International Covenant on Eco­ 6. Local employment, training, and procure­ nomic, Social and Cultural Rights adopted by ment in order to maximize local educational UN GA Resolution 2200 A (XX!) of 16 De­ and economic benefit; and cember 1966. 7. Control of and access to research data. 3. Usher P. Nonhem science and its changing cul­ This is an ongoing issue that ITC and ICC ture: negotiating research relationships in the will continue to explore with the health profes­ North. Address to the Canada and Polar Sci­ sions and the scientific community in general. ence Conference of the Canadian Polar Com­ I will conclude my remarks by stating that mission, Yellowknife, 18 May 1994. where Inuit life and Inuit health are at stake, Inuit decision making and input must be an in­ Correspondence: Rosemarie Kuptana tegral part of the circumpolar science and health I 70 Lau vier Avenue West #510 practice. Ottawa, Ontario KIP 5V5 CANADA

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