All life on Earth should be respected, and when non-consenting or manipulated Indigenous peoples are being used as human guinea pigs for personal gain in the name of science, the matter has become a human rights concern. The theoretical example presented in this week’s essay discussion prompt was riddled with ethical issues related to research of Indigenous peoples. Linda Tuhiwai Smith, a professor of indigenous education at the University of Waikato in Hamilton, New Zealand, argues that unethical research of Indigenous nations traces back to the earliest years of colonization efforts. Centuries later, similar situations are still ongoing and the ethical concerns include, but are not limited to, the following: group consent issues, individual consent issues, the relationship between the group and individual consent, a risk/benefit analysis of the research, and secondary use consent issues. However, in order to fully understand the modern concerns associated with Indigenous research, one must revisit the reason for the distrust in the first place.
When colonizers first began taking control of the Maori tribes in New Zealand, they were calculated in their approach and always pretended their actions—including destroying Indigenous traditions and placing them on reserves—were for the betterment of all people. The Maori tribes were virtually controlled without any consent on their part, and “the issue is not just that they are blamed for their own failures but that it is also communicated to them, explicitly or implicitly, that they themselves have no solutions to their own problems.” (Smith 92). Since they were historically viewed by settlers in a negative light and experienced the detrimental effects of colonization and the eradication of their culture, Indigenous peoples have a just fear of so-called research and betterment for their nation. As Smith puts it, “in the research context the terms ‘research’ and ‘problem’ are also closely linked,” and therefore any discussion of those terms in an interrelated context sets off warning signals in Indigenous communities (92). The historical trends clearly set the stage for a number of new concerns related to Indigenous research in the modern world.
The first category, group consent issues, is made evident in theoretical scenario offered up in the essay prompt. The Indigenous tribe as a whole was clearly hesitant (rightfully so) about the idea of research been conducted on them for Type II diabetes. Still, they agreed to meet with the researchers and formed their own committee of leaders, elders, local scientists, and other members of the community. This deciphering process held true to the movements Smith discussed in her work, such as Article 45 of the Indigenous Tribal Peoples of the Tropical Forests signed in Penang in 1993, which states “all investigations in our territories should be carried out with our consent and under joint control and guidance.” (119). In the scenario, the committee decided after much consideration that the research was not ultimately necessary for or beneficial to their people. This was the first violation be the research team because they proceeded regardless as if they had group consent.
This plays directly into another issue: individual consent. Similar to group consent, the individual has innate rights to protect Indigenous traditions and knowledge. Since Indigenous peoples have had their rights stripped away in the past, “they have attempted through the development of instruments such as treaties, charters and declarations to send clear signals to the world’s scientific and research communities that open-cast mining approaches to research are absolutely unacceptable.” (Smith 118). The research team from the university chose to go behind the committee’s decision to refuse research and infiltrated the community by planting their propaganda in the office of a cooperative local doctor. This act directly impeded on the rights of individual consent because the individuals had elected group leaders on their behalf and that decision to refuse research was treated with ultimate disregard. Individual and group consent and closely interwoven, and what impacts one ultimately impacts the other.
These initial two categories have a problem that lies within their relationship and how it relates to consent. By placing the research study guides in the doctor’s office, the research team successfully lured a number of Indigenous peoples with Type II diabetes to participate in studies. This seemingly disconnected act of individual consent directly violated the group consent because the Indigenous committee had banned the research from taking place within the community. The volunteers, led on by the doctor and researchers, not only had their “rights, interests, and sensitivities” exposed, they also indirectly shared the protected information of their people without group consent (Smith 119). It is clear that the two are too closely interwoven and that group and individual consent should have both been given prior to any research moving forward.
Next, there is a risk/benefit analysis associated with research. In this scenario, the Indigenous peoples had little to gain from the study because Type II diabetes is not something that needs to be targeted on an Indigenous level. It was also risky because “they noted their opposition to research on the remains of their ancestors and questioned this particular researcher’s involvement in an ostensibly medical genetic study on diabetes.” (Class Lecture Notes). Like much of the research and practices forced on Indigenous peoples throughout the decades and even centuries, this particular program did little to benefit the group being studied. What made it worse was the deeper and underlying purpose of the study that was rooted not in Type II diabetes, but rather anthropological genetic research. If the true intentions of the research had been made clear from the beginning, a decision would have been reached sooner and it is probably that no individuals would have taken part in the research.
Finally, there is a consent issue related directly to secondary use which is made clear through the most recent analysis. Since the Indigenous individuals were deceived under the guise of Type II diabetes research, it is completely unethical for the researchers to use their findings for anything but said research. The fact the cooperating individuals believed they were participating in a diabetes study is dishonest at best and a direct violation of human rights at worst. Ultimately, it is a sign of complete and utter disrespect to Indigenous peoples. Smith says this is interconnected to most Indigenous concerns because “the denial by the West of humanity to Indigenous peoples, the denial of citizenship and human rights, the denial of the right to self-determination—all these demonstrate palpably the enormous lack of respect which has marked the relations of Indigenous peoples and non-Indigenous peoples.” (120).
It is clear that this entire scenario was one giant consent issue and directly related to a lack of respect for Indigenous peoples. If the research team had been transparent in the beginning with their true intentions, the community would have known right away that they would not have wanted to participate. The doctor would have most likely been opposed to the propaganda being placed in the office. Even if it had been placed, the individuals would not have been susceptible to said propaganda because the motives would have been transparent. If the research had truly been just about Type II diabetes, it still would not have been necessary or beneficial to the Indigenous peoples and the consent would still be needed from all parties. Anything that disrespects the consent practices at any time is intrusive on human rights and should have appropriate consequences for the malevolent actions.
Smith, Linda Tuhiwai. Decolonizing Methodologies: Research and Indigenous Peoples. London: Zed, 2012. Print.