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Abstract
Indigenous peoples exist on every inhabited continent and are defined by their way of life, interaction with their environment, and relationship to surrounding peoples. Their economies and cultures are often under threat of erosion, and they tend to have worse health than their nonindigenous neighbors. Legal rights vary according to their country. Moral rights for indigenous peoples have been argued on both liberal and communitarian grounds to include self-determination and preservation of community and culture. In terms of health and health care, they share the same rights as the rest of humankind but can also claim specific rights, including a right to culturally appropriate health care, though it is not always clear whether this should be understood as a liberty or a claim right. Whether there is a claim right placing a duty on the state depends on the role of the particular state concerned. Nongovernmental bodies and health-care practitioners can also have duties ascribed to them in relation to indigenous rights. In addition indigenous peoples can have intellectual property rights to health-related resources arising from their knowledge, culture, and environment. However, indigenous concepts of ownership sometimes differ from Western concepts, leading to difficulties in allocating compensation.
This entry starts by briefly considering who comes into the category of indigenous people. It goes on to explore the concept of rights and identify those rights that might be ascribed to indigenous peoples. General rights are considered first and then rights specifically related to health care. Finally intellectual property rights are discussed with specific reference to health-related knowledge.
Introduction
In this entry a brief history of indigenous peoples will be offered, and their present situation will be overviewed. The concept of rights will be explored and different categories and justifications of rights outlined. These will be applied to health care in the first instance and then more specifically to the health care of indigenous peoples. Implications of these for governments, NGOs, and health-care practitioners will be explored. Separate treatment will be given to intellectual property rights, as much knowledge drawn from indigenous cultures and peoples is health related and so relevant to this entry.
History And Development
It is estimated that there are around 370 million indigenous people on the planet, constituting some 6 % of the human species (UN Permanent Forum on Indigenous Issues. Undated). They have emerged as a category since the sixteenth century CE, when European colonialism came on the scene as a major force and reduced whole populations on other continents to a subject or servile role. Some of those peoples, particularly in the Americas, Australasia, and northern Eurasia, became minorities in their own countries and typically suffered economic and cultural marginalization, often exacerbated by population loss. This loss was sometimes catastrophic, and some peoples (for instance, the indigenous inhabitants of Tasmania) disappeared entirely. Those who survived were often treated by the surrounding populations as inferior, even subhuman. During the nineteenth and twentieth centuries, colonial and successor states’ treatment of indigenous populations has evolved from waiting for them to die out, to seeking their assimilation with the majority population, to (more recently) attempting to improve their situation, and finally in some cases to supporting their cultural survival. This evolution is partly a result of changing attitudes among majority populations, including an element of so-called white liberal guilt. But indigenous resistance has also become increasingly effective, and this has contributed to change in some countries.
There are other peoples, particularly in Africa and Asia, whose minority status is similar to that of indigenous peoples in the aforementioned countries, but whose minority position has developed along different lines, partly as a result of local factors. However, as many of these countries were themselves subjected to colonial rule in the nineteenth and twentieth centuries, European colonialism has contributed to the position of those indigenous peoples also. As African and Asian countries develop economically, these groups are suffering some environmental and economic losses and in many cases have come under pressure to assimilate to the surrounding societies.
Conceptual Clarification
Indigenous Peoples
The term “indigenous peoples” refers to a particular part of the human species with specific characteristics. The fact of being literally indigenous is only one of these characteristics and does not in fact distinguish them from other peoples who are likewise indigenous to their country or territory.
“Indigenous peoples” have several more defining characteristics, probably best summarized by the UN Permanent Forum on Indigenous Issues (p.1) as follows:
- “Self-identification as indigenous peoples at the individual level and accepted by the community as their member.
- Historical continuity with pre-colonial and/or pre-settler societies
- Strong link to territories and surrounding natural resources
- Distinct social, economic or political systems
- Distinct language, culture and beliefs
- Form non-dominant groups of society
- Resolve to maintain and reproduce their ancestral environments and systems as distinctive peoples and communities.”
Indigenous peoples exist on all inhabited continents and include aboriginal people in the Americas, Australia, and New Zealand; Twa, Turkana, Maasai, San, and others in Africa; Tribal peoples in India; Hill tribes, Negritos, and others in Southeast Asia; Sami in Scandinavia; and numerous peoples in northern Eurasia, Japan and the Pacific. Some indigenous peoples are partly dispersed from their homelands, and many in the Americas, Australia, and New Zealand now live in cities. However, they typically retain links with their communities in their native territories. In some cases (e.g., in Canada and the USA), they have separate legal and political status within their countries.
Indigenous peoples are vulnerable in several ways. Because their material economies tend to be very different from the economies of surrounding societies, they are often under pressure to abandon aspects of their way of life that do not fit the larger economies around them. And because they tend to be dependent for their identity and continued community existence on relatively small tracts of land, loss or degradation of their land is likely to have a deleterious effect on them. Their communal, social, cultural, and religious traditions are generally more dependent on their particular locations, than those of their nonindigenous neighbors, so relocation can be disastrous for their continued existence as communities. And they lack the weight of numbers that might counterbalance these vulnerabilities. The dangers of their situation are clearly attested by the history of many indigenous peoples over the past 500 years, during which time pressures from colonial and other societies have resulted in extensive losses. For some peoples, this has culminated in complete obliteration; for many others it has led to poverty and underclass status in the societies that have destroyed their communities.
In health terms indigenous peoples on average have significantly worse health, in terms of morbidity and mortality, than the rest of the population in both Western countries (Pulver et al. 2010) and developing countries (Ohenjo et al. 2006).
Rights
Influential definitions of rights, such as those offered by Raz (1988) and Dworkin (1996), identify a right as an interest of a person or persons, which is so important to the interest holder(s) that it places a duty on others to accommodate that interest. The claim on the other’s duty can be defined as a “right,” and it overrules competing claims of utility or interest.
Rights have also been categorized in a number of ways, and some of these are presented below.
Moral Rights And Legal Rights
Rights differ with regard to the way they are justified. It could be argued that people “have” a right even if they are unable to exercise that right; for instance, that people have a right to freedom of speech in a dictatorship where the exercise of that right is repressed. Despite the repression it can still be argued that the right exists on the basis that all members of the human species have that right, by virtue of their rationality or some other morally significant characteristic. In situations where tyrannical governments suppress freedom of speech, that right might be seen as a justification for a fight for freedom of speech. So the right is a moral right, existing independently of whether anyone enjoys that right, and it exists by virtue of the moral argument that justifies it. The force of such argument rests significantly on moral principles and political theory. Natural rights arguments go back through Locke to Aquinas and depend on a particular view of what it is to be a human being, emphasizing rationality and the ability to make moral choices. These characteristics have been used to justify various rights, civil and political. In the twentieth century, they have also provided arguments for social rights such as the right to health care.
On the other hand, it could be argued that people in the aforementioned dictatorship do not have a right to freedom of speech at all, because the state does not allow the exercise of any such right. This assertion would be based on the observation that freedom of speech is repressed; therefore, the right does not exist. But that argument relates to a different kind of right from the moral right referred to above, justified differently, and existing in a different way. If the state provides for such a right, it exists. If it does not, it does not exist; so its existence or nonexistence can be established empirically through checking laws, court decisions, etc. Such rights are referred to as legal or positive rights. Clearly, it is possible to have a moral right to freedom of speech, but no legal right: the situation that exists in the dictatorship.
Liberties And Claim Rights
Rights, whether legal or moral, can be divided in other ways. A useful distinction originally made by Hohfeld (1919) differentiates rights to act in certain ways from rights to be provided with certain things. The right to freedom of speech, it is argued, is a right of the individual to act in a particular way, and it places a duty on all others not to prevent that individual from acting in that way. This duty involves doing nothing, as it is a duty of noninterference, and no provision of goods or services is involved. (In fact resources are needed to create a peaceful and regulated society where freedom of speech is secure, but the intention is to protect rather than to provide.) On the other hand, a person’s right to health care, if it exists as either a moral or legal right, requires that some specific other has a duty to provide health care to that person. The duty is specific rather than general, and the question of who actually has that duty must be determined by one or more of a number of factors in the relationship between right holder and duty holder, including among other things law, promise, contract, and debt. A person’s right to health care might place a duty on that person’s insurance company, on the basis of individual contract; or on the state, on the basis of law.
Rights to act unmolested, such as the right to freedom of speech (and other freedoms such as movement and assembly), are often referred to as liberties. Rights to specific goods provided by a specific other are often referred to as claim rights, and where the good is something requiring provision to large numbers of people (and in many contexts provided by the state), the right is often referred to as a welfare right.
Universal And Nonuniversal Rights
The third relevant distinction of rights concerns their application. Some rights are universal, belonging to every individual. Moral rights justified by arguments concerning humanity, rationality, and similar characteristics are typically framed in this way. But some rights apply to certain individuals and not others. These may be moral rights (e.g., children’s rights) or legal rights (e.g., tenants’ rights under certain jurisdictions). An important subcategory of these rights is what Kymlicka (1995) calls group differentiated rights. These are rights that are confined to specific groups. So rights might be ascribed to members of a particular indigenous community that are not ascribable to anyone outside that community.
Finally, and again particularly relevant to indigenous peoples, are group rights. These are rights that are held by groups rather than individuals and indeed would be meaningless if they were ascribed to individuals. Kymlicka identifies cultural rights and rights to self-determination as falling into this category, and Buchanan (1993) includes language and political autonomy among such rights. None of these goods can be meaningfully enjoyed by an individual in isolation. It should be added that the logic of the group rights concept is disputed by several commentators (see, for instance, Griffin 2008).
Universal rights apply to indigenous peoples as they do to the rest of humanity. For example, with regard to the aforementioned liberty right to free speech, and the claim right to health care, if the existence of those rights is recognized, there seems no clear reason to exclude indigenous peoples from them. The right of collective self-determination could be added to this list as a universal moral right, justified by reference to universal human characteristics. But this must be a group right. The problem with this right is that it is not clear in most cases what group counts as the right holder. Nations typically claim self-determination, but nations are not always clearly definable, and other groupings also claim this right in some situations.
Indigenous Rights
Moving beyond universal rights that include indigenous peoples, rights that are ascribable to indigenous peoples exclusively need to be considered. An example of a right claimed by indigenous peoples, and also endorsed by the UN Declaration of Indigenous Rights, would be the right to ownership and use of an ancestral territory and its resources (UN 2007 article 26). In some cases such rights can be exercised by individuals, so we could classify these in Kymlicka’s category of group-differentiated rights. For instance, the right of the Sami people to herd reindeer in Sweden is exclusive to the Sami and is a right that an individual Sami can exercise (Anaya 1991). Other rights that have been claimed by indigenous peoples are more obviously group rights. The right to regulate one’s community according to its own norms, also endorsed by the UN Declaration (UN 2007 articles 33–35), is clearly a group right, in that it cannot be exercised by an individual in isolation. Collective self-determination is a group right that indigenous peoples have frequently claimed and again is endorsed by the UN. This last is not in itself a right that is peculiar to indigenous peoples, but the exercise of this right will generally work very differently for indigenous communities, who often number a few hundred, as against similar claims by other populations, typically numbering millions.
Ethical Dimension
Arguments For Indigenous Rights
Where indigenous peoples enjoy legal rights, they are specific to the jurisdiction; and jurisdictions vary. So the overview of arguments for indigenous rights worldwide will focus on moral rights. Arguments fall mainly into two categories, liberal and communitarian. Kymlicka’s liberal argument (Kymlicka 1995) has been among the most influential on the topic. True to the liberal tradition, he starts from the universal right to liberty and argues that individual choices, and the very use of individual liberty, only have meaning within the context of a culture, as culture gives significance and value to available choices. In order for people to exercise the right of individual self-determination, they need to have an identity and culture, as well as the language to frame and transmit that culture. So there must be a right to culture, without which individual liberty is meaningless. For some minorities, under pressure to give up their culture, language, identity, and community membership, this is a major issue. Indigenous peoples are often among the most threatened minorities because their identity tends to be particularly vulnerable to pressure from surrounding societies. The right to culture as set out by Kymlicka justifies their resistance to the forces that threaten them and their demand that governments and surrounding societies respect that right. Kymlicka also argues that the right to cultural identity requires other rights, notably a right to self-determination, giving indigenous peoples whatever collective power and autonomy is required to preserve their identity.
The communitarian position involves a somewhat different argument for the existence of indigenous rights than does Kymlicka’s liberal position, as it has a different starting point – that the community constitutes the person (Spector 1995). The destruction of community membership and loss of community identity therefore involve the undermining of the person and that is likely to be sufficiently damaging to the individual to meet Raz’s and Dworkin’s criteria for rights, in that it is important enough to place a duty on others not to inflict or allow this harm. As with Kymlicka, the argument justifies a right of communal self-preservation and, consequently, self-determination for the indigenous people concerned.
Indigenous Rights In Health Care
Universal Rights Relevant To Indigenous Peoples Health Care
Moving on to health-care-related rights, the initial focus again is on rights that can be argued to apply to all people equally, including indigenous peoples. An appropriate starting point might be the moral right not to be harmed. This is clearly a liberty, and without that right, other liberties must be seriously compromised. For that reason, most legal systems also include protection from harm as a legal right. It follows that an individual may reasonably claim a right not to have their environment polluted; their food, water, and air poisoned; or their environment rendered noxious in any way. That right needs to be protected through environmental and public health measures, but it is in essence a right to be left alone, a liberty.
Given the location of some indigenous peoples, the equitable protection of their health in this way may require special interventions. For instance, indigenous people living in remote areas subject to extractive industrial exploitation with toxic by-products are at particular risk of health damage. However, the same principle applies to any population. Their environment will determine how their environmental health can be best protected, and in that respect, indigenous peoples are no different from the rest of humanity, though their environmental circumstances may place unusual demands on governments and health authorities.
The assertion of a universal claim right to health care as a public provision is more controversial. In many countries it is not recognized as a moral or legal right, either because of the prevailing ideology or due to a lack of resources. However, in countries where the government provides or organizes health care as a right, it is arguable that a belief in such a moral right helps to justify that provision. And if there is an argument for the moral right, there is no reasonable ground for excluding indigenous people from it. A right of this sort is generally taken to apply to all persons equally, so this must include indigenous peoples. That equality is itself problematic, as it is variously argued to be equality of access, equality of money spent, or equality of outcome. A compromise position might be that as far as possible the benefits available from health-care provision should be equally available to all.
But in many cases the benefits of health-care interventions can only be experienced and properly evaluated in the context of culture, so equity requires that health-care systems be sensitive to the culture of their recipients. Where a health-care system generally reflects a dominant culture, the care offered to minorities needs to be consciously tailored to their culture. This can be applied to all minorities, native (including indigenous) and immigrant. Equal access to health care can only be achieved if the health-care system is equally accessible and usable by people of all cultures, and this requires that health care be offered in such a way that it relates with equal efficacy to the cultural framework of every user, minorities and majority alike. That is not a group right or even a group-differentiated right. It is a universal individual right. In countries where the state lacks the resources to provide health care to its population as a claim right, the equality argument can still justify a right to culturally appropriate health care as a liberty, with which governments should not interfere.
Group Rights Relevant to Indigenous Peoples Health Care
States And Governments
Continuing the focus on moral rights, the liberal and communitarian arguments applying to indigenous rights can now be linked to health care. For both traditions, the survival of cultural and communal identity is fundamental. And this is clearly a group right. No one person has a right to the survival of a community or culture, as it can only be a right of the community. This places a duty on those outside the group (with the relevant power) to refrain from damaging that culture and to act in a way that makes it possible for that culture to survive. One way of acting thus is to ensure that provisions such as health care are available to members of that community in a culturally appropriate way, so that they do not have to compromise their culture in order to receive those benefits. This justifies the right of individual members of the community to receive culturally appropriate health care.
It was suggested above that indigenous people already have a right to culturally appropriate health care on the basis of equal access to the benefits of health care. So the right to culturally appropriate health care is now underpinned by two rights, the right to equal treatment and the right to cultural survival. But it still needs to be determined whether the right is a claim right or a liberty, that is, whether the relevant authorities have a duty to actively provide culturally appropriate care or simply a duty to allow indigenous peoples access to that care without interference or imposition. The right to equality only underpins a claim right if the rest of the population also has a claim right to health care. If they do, it becomes a matter of equity, in the sense that if the authorities provide health care for the rest of their population, they should provide the equivalent for their indigenous peoples. However, if the state does not accept, or cannot resource, a duty to provide health care to the general population, the equity argument requires that they do not provide it to indigenous people either.
What about the right to cultural survival? Kymlicka argues that culture is necessary for the exercise of freedom, which government in the liberal state has a fundamental duty to protect. That would suggest that government also has a duty to protect cultures that would otherwise be obliterated. If the state has a duty to protect freedom, it could be argued that that implies a duty to provide for cultural preservation where necessary and that implies that it has a duty to provide culturally appropriate health care. That duty stands separately from the duty to treat indigenous people equally with the rest of the population, so it would not require that the state provides health care for the rest of the population, for it to provide for indigenous people.
The above argument is far from watertight, but indigenous rights in this area can be justified in other ways also. On the question of cultural rights, one modest variation on the above would be to argue that government has a general duty to promote and preserve cultural identity in all citizens. For the majority population, their dominant culture may not require state action beyond the usual provisions of education, media, etc., but indigenous peoples are more likely to require special measures because of their generally vulnerable position. On the question of culturally appropriate health care, there are several possible justifications. First, the exceptional disadvantage and vulnerability of indigenous people may be seen as constituting the basis for a specific government duty, derived perhaps from a general duty to protect the vulnerable. Second, the state might be argued to have a restitutive duty to repair damage done to indigenous peoples during colonization. Or third, there may be treaties or other agreements involving indigenous peoples and the state that place the government under a duty to recognize the cultural and health-care rights of indigenous peoples. In Canada, for example, the last two justifications have some significance. There has been explicit acknowledgment at the highest government level of past harm to indigenous people inflicted by residential schools (Dept of Aboriginal Affairs 2008), and though this did not acknowledge any claim right to restitutive action, it arguably strengthens the case for such a right. And treaties between the Canadian government and indigenous peoples are argued by a number of commentators to entail a claim right to health care (e.g., Boyer 2004).
However, where the state is too poor to resource health care for any of its citizens, it is perhaps unreasonable to place a duty on that state to provide such care to its indigenous peoples. This view can be derived from the Kantian principle that “ought implies can” and could apply to many third-world states. Whether other wealthier countries have any duty to make up the shortfall is a matter of considerable philosophical debate, centering around the question of distributive justice between nations. Where a wealthier country is also the former colonial power, whose administrators may have contributed to the plight of the indigenous peoples, the question must center on whether compensatory or restitutive obligations between countries on these matters are morally and politically sustainable. The UN Declaration (UN 2007) identifies a right on the part of indigenous peoples to restitution or compensation for expropriated land and cultural assets, creating a corresponding obligation on the part of states. But it does not specify which states or in what relation they might be to the indigenous peoples, and the default interpretation of the UN position must probably be that the responsibility lies with the state governing the people and the territory.
The systems of indigenous health-care provision in North America can be interpreted as implying acceptance of a claim right to some special provision, albeit very limited and partial. Both Canadian and US federal governments have historically provided separate health-care systems for their indigenous peoples. In neither case did the federal government originally have a declared commitment to support the cultural survival of the indigenous peoples, and for many decades, the care provided did not reflect either cultural sensitivity or equality of provision. However, since the 1980s, this has slowly changed as the federal governments in both nations have sought to transfer control of provision of health care to indigenous peoples themselves, while the governments retain some financial responsibility. This could be construed as a limited recognition of the right discussed above.
The transfer of control of health care to indigenous communities themselves represents a further development of culturally appropriate health care, and the right of indigenous peoples to control their own health care is also included in the UN Declaration. This can be seen as a practical measure to ensure appropriate care but also as an expression of the right of self-determination. However, it is important here to distinguish control of health-care provision from the responsibility for resourcing health care. Indigenous peoples are often poorer than their nonindigenous neighbors and are unlikely to be able to resource health care to the same standard. Where a claim right on the part of populations to receive health care is recognized, it is also usually recognized that that right should be enjoyed equally by every member of the population affected and that a government accepting a duty to provide should provide equally. Leaving indigenous peoples to resource their health care from their own resources would be a denial of the equal nature of their right to health care. So there appears to be something of a conflict between the right of full self-determination in this area and the recognition of the government’s duty to provide equally.
Another potential problem arises for governments where indigenous peoples wish to include traditional healing within their culturally appropriate care. Some traditional healing is recognized by Western medicine as having therapeutic merit, but not all. So nonindigenous taxpayers may find themselves subsidizing their poorer indigenous neighbors in receiving traditional healing in which Western medicine sees no therapeutic value. Whether nonindigenous taxpayers accept this will probably depend on the relationships that exist between communities and the government’s ability to manage these relationships in a positive way. With regard to the rights involved, however, the definition of equality in “equal benefit” is probably the crucial ethical consideration here. The preferred goal might be to combine cultural and therapeutic benefit in a way that enhances both.
NGOs And Other Nongovernment Agencies
In situations where the funding of health care comes partly from external sources, such as charities, NGOs, and international agencies, the considerations are somewhat different from those of state and government. Where indigenous peoples are citizens or residents, the state has duties to them that arise from that status and that may or may not include claim rights to health-care provision as discussed above. But indigenous peoples are not citizens of NGOs. If they have claim rights on NGOs or other international bodies, such rights would need to be based on different relationships. NGOs arguably have duties to respect the liberties of the indigenous people with whom they are in contact: duties not to harm, interfere with, or coerce them; and as part of this, a duty not to impose inappropriate health care on them. In fact the same could be said of everyone who is in contact with indigenous peoples. But the element of accountability that exists between citizens (and residents) and the state cannot apply to NGOs. Such bodies are accountable in a formal sense to those who mandate and resource them, and these are typically foreign governments and organizations and other external donors. These bodies have the obvious claim rights over the NGO. That said, it may be possible to argue that indigenous people do have some claim rights in regard to NGOs where contracts, promises, or agreements have been made with or by the NGO creating a moral duty on that body to keep its undertakings. In developing countries where the NGO may have greater health-care resources to offer than the government, this is an important factor. The other argument to make here is that an NGO operating on the territory of a state is also accountable to the government of that state. Where it can be argued that an indigenous people have a claim right placing a duty on the government to provide appropriately and that the government in turn has a claim right placing a duty on the NGO to do likewise, this effectively constitutes a claim right of the indigenous people concerned to appropriate provision from the NGO.
Health-Care Practitioners
An indigenous right to culturally appropriate health care also raises some issues for health-care practitioners working with indigenous communities, and this will apply whether that right is treated as a liberty or a claim right. Most health-care professions are subject to codes of ethics that can in certain instances conflict with indigenous rights. Where traditional healing is practiced in an indigenous community, practitioners of Western health care may encounter this through working with patients who are also working with a traditional healer. In general it can be said that patients benefit when healers of different traditions communicate and cooperate; but this is not a straightforward matter where the Western practitioner doubts that the traditional healing being offered is in the patient’s interest. However, any response to this by the Western practitioner would need to stay within their duty of respect for the patient’s liberty to seek traditional healing and indeed preferably also within all the relevant rights set out in the UN Declaration.
There are other areas where Western healthcare practice may come into conflict with the life and culture of an indigenous community. Western concepts of patient’s rights to autonomy and confidentiality are sometimes quite alien to communities with collectivist cultures, where communal responsibility takes priority and where, for instance, decision-making about individuals is regarded as the legitimate province of family or tribe and the withholding of important personal information from relatives or elders is seen as unwise or immoral. In that cultural context, the Western model of the exclusive practitioner patient relationship is clearly alien. If the practitioner takes their patient’s right to culturally appropriate health care seriously, they would be faced with a serious moral dilemma arising from the conflict between their professional ethics and their patient’s culture. Their view of their duty in this situation will depend on how the conflict between the individual rights and duties enshrined in their professional ethics and the right to culturally appropriate health care is resolved.
Intellectual Property Rights
Valuable resources, such as minerals and plants of medicinal value, have often been harvested from the territories of indigenous peoples. Local indigenous people’s knowledge of the properties of these substances frequently provides vital information for prospectors in identifying their targets. In most jurisdictions knowledge gained by one person that is obtained and used by another person confers significant rights of ownership and compensation on the person whose knowledge this originally was. Here, the knowledge initially resides with the indigenous people. So how can the principle of ownership be applied in situations of this kind?
The law and ethics of intellectual property rights are dominated by Western perspectives on individual effort and ownership originating from John Locke, who argued that the mixing of raw material with one’s labor confers rights of ownership over the result. This principle, developed to apply to the work of farmer and artisan, has been carried over into the field of intellectual property rights. Alternative perspectives come from utilitarianism and Kantian rights theory, but like Locke’s, these are largely individualistic in their concept of ownership rights. In this intellectual framework, the prospector who discovers a natural substance with useful properties can claim ownership of the rights over that substance on the basis of his or her discovery thereof.
Historically negative Western attitudes to indigenous peoples’ cultures and knowledge systems led to an assumption that their knowledge was not of a level worthy to confer rights of ownership over its products. So the Western prospector who received knowledge from an indigenous source typically claimed rights over that knowledge for himself or herself. The result of this is that the knowledge rights of indigenous people were denied recognition and compensation.
In recent decades efforts have been made to rectify this situation and to establish the rights of indigenous people to ownership. However, the concept of individual ownership of knowledge is somewhat alien to many indigenous cultures (indeed to many non-Western cultures generally) and indigenous people have in some cases taken the view that rights over knowledge must be seen as collective, belonging to the people as a whole rather than to the individual who gave the information to the prospector. For them it makes little moral sense to confer ownership (and compensation) on the member of the community who happened to transmit the information.
However, acknowledgment of collective ownership does not always resolve the question. There is also an issue over the very nature of ownership, as it is understood by some indigenous peoples. For the Maori of Aotearoa/New Zealand, for instance, resources such as those under discussion are subject to a concept best translated as guardianship, rather than as ownership. Guardianship involves rather different rights and duties from ownership and is, while possibly shareable, not in any easy way transferable. Above all it is not suited to being part of a commercial transaction. So compensating an indigenous community for a scientific resource may not be possible in a way that would be satisfactory to the people themselves, as they would be unwilling to relinquish all control of that knowledge. They would expect some continuing rights, though these might be shareable with the new acquirers.
Indigenous peoples also constitute an intellectual resource in themselves. Their distinct histories and ways of life often lead to the development of specific characteristics that are very interesting to the health and biological sciences. These include matters of diet and lifestyle and also genetic characteristics. In this respect they are rewarding research informants. However, rights over the results of this research raise similar questions to those raised by intellectual property rights. In the past indigenous people have been researched in an exploitative way, and the prevailing research ethics have to some degree exacerbated this. The Western research ethics tradition in the physical (including biological) sciences tends to be individualistic and hierarchical, and researchers have seen themselves as the locus of ethical responsibility for their research, including protection of the interests of their subjects. Researchers have also been seen as the rightful holders of the intellectual rights to their results.
However, different ethical priorities have developed in other areas of research, including parts of the social sciences, where a more equal and negotiated relationship between researcher and research informant has started to emerge. In some parts of the world, indigenous peoples have organized to resist research exploitation and to negotiate protocols ensuring respect for their rights. This has been accompanied by the development of several sets of guidelines produced both nationally and worldwide (Sinjela and Ramcharan 2005) which have sought to reconcile the aspirations of health researchers with the rights of indigenous peoples. The key development, perhaps, is the acceptance by at least some Western researchers of the collective aspect of the indigenous community’s right to share the control of the research process. This includes indigenous community involvement in the ongoing management of the research project and also a collective stage (prior to the individual stage) to the giving of consent. This principle is also embodied in some of the published guidelines. In terms of intellectual property rights from the research results, most of the guidelines are less clear, and a good deal seems to depend on the parties involved. Intellectual property law at national level still predominantly reflects Western individualist assumptions, and change toward collective rights for indigenous people has mostly happened at the local or international level.
Conclusion
Indigenous rights, in health care and generally, are essentially based upon universal rights, reframed and formulated for the specific circumstances of indigenous peoples. These rights have been widely recognized, not least by the United Nations, but the challenge lies in ensuring that they are respected and protected by governments around the world. At present the situation differs greatly from country to country. Governments of developing countries are clearly at an economic disadvantage in meeting the needs not only of their indigenous inhabitants but of all their people. However, developed countries with indigenous populations also face challenges, some economic and some political. In this situation indigenous peoples need supporters and advocates; but even more, they need to be supported and respected in advocating, and acting, for themselves.
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