Goals

After reading this article, you will be able to do the following:

• List examples of how Western scientific, medical, and academic research has caused harm to Indigenous and minority populations.
• Identify examples of reciprocal and collaborative research relationships.
• Access several disciplines’ ethics and informed consent web resources.
• Locate and access Salt Lake Community College’s Institutional Review Board’s (IRB) approval resources.
• Compose a hypothetical voluntary informed consent document.

Introduction

Primarily, it is social and behavioral science researchers who conduct ethnographic research; however, research ethics transcend disciplines and fields. In this article, you will learn how Western scientific, medical, and academic researchers are currently expressing reflexivity to ensure that our research practices align with emerging ethical principles–specifically, those that embrace diverse epistemologies. Today, the dominant topics in research ethics include acknowledging the social and behavioral sciences—among others’—uncomfortable history, which emerged from a colonial and racist one. This article uses examples from diverse fields inside and outside ethnographic studies. Whatever your field of study, this article will support your ability to make ethical decisions about ethical treatment of the people who your research affects.

Is Colonization Just History?

Whether you are a United States citizen who was educated in American history and civics studies, or whether you are new to North American history as a visiting or immigrant student, some of the atrocities in American history will not surprise you. It is easy to say that once upon a time there were some really bad actors on these lands and in these territories, who massacred Native tribes, imported African slaves, and asserted unethical—even immoral—power over people, groups, and cultures who they could forcefully dominate.

While those events may seem far in the past, the consequences and power maneuvers continue. For example, while colonization today does not appear overtly, modern colonization practices are expressed in the way we govern, own, buy, exchange, and interact in the system that emerged from that history. It still holds true today—white settlers transmitted their wealth and power generationally through families, institutions, and governments. Conversely, native and minority populations continue to remain economically, culturally, and linguistically oppressed. Let’s look at some examples.

Nonconsensual Medical Studies

Historically, the medical community has failed to honor individuals’ right to their own body from a time when doctors were known to pay grave robbers for black corpses up until more famous examples, such as the Tuskegee Syphilis Study and the Henrietta Lacks nonconsensual cell-collection study.

The Tuskegee Syphilis Study spanned over forty years. Without obtaining informed consent, medical researchers observed untreated Black syphilis sufferers’ disease progression or natural history. Even once treatment became widely available, these participants were not offered treatment. This profoundly harmful study remains a cautionary tale for the medical ethics research community (U.S. Public Health Service, 2023). Another medical-ethics violation example is the Henrietta Lacks case. Without consent or awareness, African American Lacks’ cancerous cervical cells were collected for study in 1951 and used to create a research cell line, called HeLa. Lacks suffered and died from cervical cancer in 1951. While the medical-research community gained much benefit from studying Lacks cells, it was clearly unethical to do so without her consent (Sinnot & Sohini, 2023).

Genocide

It is difficult to have missed the recent outcry over the thousands of murdered and missing children found buried in Canada’s residential schools. These deadly outcomes, alongside the cultural and linguistic eradication that occurred by separating Indigenous children from their families and cultures, occurred throughout all of North America:

Native American children were forced to cut their hair and give up their traditional clothing. They had to give up their meaningful Native names and take English ones. They were not only taught to speak English but were punished for speaking their own languages. Their own traditional religious practices were forcibly replaced with Christianity. They were taught that their cultures were inferior (Native American Boarding and Day Schools, 2023).

Most of us have studied the tragic Trail of Tears in U.S. history, where Native Americans were forced from historical lands and onto reservations. In Utah, if you have not already learned about local history, the Bear River Massacre and resulting cultural erasure and misinformation about the Shoshone Tribes should be essential reading. It is not just that we need to know what happened to the Shoshone people—they were massacred—that is not enough. The massacre’s narrative was also written by those who committed the atrocity. Only just recently, the Shoshones told their story to a broad audience from their own perspective (Parry, 2019).

And Now?

You might wonder if these examples are relevant to modern ethnographic research. The Smithsonian Institute addresses this question in their acknowledgments. They recognize that anthropologists have used techniques described as salvage anthropology to unethically collect disappearing populations’ artifacts for preservation, even as recently as the twentieth century (Native American Boarding and Day Schools, 2023).

It’s important to note, however, the power imbalance inherent in these historical interactions between ethnologists and American Indian and Alaska Native communities skews any ‘consent’ related to the acquisition of these materials from Native individuals to white anthropologists and scientists (Native American Boarding and Day Schools, 2023).

Ethical scientific institutions are seeking reparations, repatriation, and rematriation regarding these ethnological collections, which is addressed in more detail later.

Today, researcher’s methods of obtaining voluntary informed consent have become more reflexive and more accessible, with greater sensitivity towards their informant’s cultural norms and their right to their own knowledge and property. For example, consent from one informant is inappropriate if their consent would place them at odds with the rest of their community. Also, written consent may be inappropriate—inaccessible—if the informant cannot read the language. Consent must be transparent, revokable, and leave the informant comfortable and fully informed about their participation in the study and its true nature.

Museums, Collections, and Reciprocal Research Relationships

In addition to research methods becoming more reflexive, cultural artifacts that had been acquired by force, by colonization, and by theft are beginning to find their way to their original cultural homes. One of the most famous recent examples is the Koh-i-noor Diamond, which resided in Queen Elizabeth’s crown since her coronation. The diamond was a clear emblem of India’s colonization. Indeed, Western institutions justify curating these ancient jewels and artifacts by maintaining that they afford superior preservation and protection practices than the countries of origin. In NPR’s May 8, 2023 radio show 1A, “The Coronation, The Kohinoor Diamond, and Its Colonial Past,” discussion panelist Priyamvada Gopal, postcolonial studies professor at Cambridge, highlighted this sentiment as a very racist stance. There is no evidence that the countries of origin are less equipped or capable of making decisions about how to curate their ancient treasures, she argues. Her greatest supporting evidence is the fact that the objects and artifacts exist, in many cases for millennia, before Western institutions acquired them.

Western bias persists maybe because of the belief that Western methods are the most advanced and effective way to know the world. An example of this Western bias was revealed during Australia’s worst fire season in history, 2019-2020. Fire scientists the world over realized that the Indigenous Australians’ traditional beneficial burning patterns they had used for millennia prior to becoming colonized were superior to Western methods in preventing devastating wildfires.

Rather than the dualistic framing of contemporary Southeast Australian forests as high-value biodiversity regions that must be ‘locked up’ for conservation of resources to be ‘opened up’ for logging, we need to frame these landscapes as the neglected homelands of Indigenous Australians if we are to arrest the wave of extinctions that are stripping Australia of its unique biodiversity (Fletcher, Romano, Connor, Mariani, & Maezumi, 2021).

Indigenous wisdom and practices, such as beneficial burning, are experiencing the same extinction the world over because of cultural and linguistic oppression. Modern research, ethnographic and otherwise, is best approached as a knowledge-sharing reciprocal relationship—it must ensure that the external goals do not interfere with the higher priority to preserve and serve the target community’s integrity.

Data, Recordings, and Linguistic Preservation

The language restoration field is a primary example of where reciprocal research has failed. Thus far, linguists’ approach to preserving and restoring language has not worked because oppression and colonialism continue to proliferate. We exist in “[…] a moment of historical tension in which language oppression and revitalization coexist” (Roche, 2022). The processes linguists use serve to preserve items as dead—as artifacts in conservative archaic forms—rather than to restore and actively proliferate language as a living element of native cultures. Indeed, one strong criticism of the approach to saving languages poignantly argues that “[t]o save languages through the production of grammars, dictionaries, and other documentary artifacts is like saving endangered animals through taxidermy” (Gaby & Woods, 2020). The approach has often been lethal to the intended outcome.

What Is Ethical, Then?

What we can begin to see is that ethnographic research–or any kind of research–must meet a higher ethical standard today than it did even just a few years ago. Historically, just seeking knowledge was sufficient reason to conduct research using a group’s bodies, cultures, languages, and artifacts. Similarly, researchers found it sufficient to get consent without clear reciprocity. Data and artifact ownership was assigned to the researcher, to their academic or corporate stakeholders, or to a government entity. This practice has led to myriad rematriation and repatriation efforts around the world and is very much occurring here in the U.S. Repatriation means the efforts to regain control of–or at minimum—access to data and artifacts that were removed from tribal and community access and control. Rematriation is a term many Indigenous communities use and prefer over repatriation for the spiritual, cultural, and often feminist slant that it intends.

Ethnographic researchers who come from entities outside the social sciences need to consider why or even if the knowledge sought is going to benefit the community studied. Researchers must consider how to not only include, but also to collaborate and reciprocate meaningfully with the community it benefits. As mentioned above, the Australian fire researchers who fully integrated Indigenous knowledge found a richer outcome.

Another excellent reciprocal relationship example is actually a very successful linguistic restoration project. Anne Makepeace created the documentary We Still Live Here – Âs Nutayuneân, which describes how Massachusetts Institute of Technology linguists, a tribe member who took advantage of linguistic education, and the members of the community fully collaborated and worked in a reciprocal relationship to restore the Wampanoag language. The documentary highlights how important reciprocal research is between linguists and tribal members. You can find access to the documentary on pbs.org. See Additional Resources for a link.

Ethical practice guidelines and statements have become more commonplace among the professional organizations that frame these research professions. Every credible institution uses an Institutional Review Board (IRB) to approve research that includes any human element. Salt Lake Community College (SLCC) is no exception. At SLCC, current IRB explanations state the following.

The degree to which your human informant participates will affect the approval process’s complexity. However, to be successful, consider planning and creating an ethics standard in advance. The Common Rule, as described in the Anthropological Association of America’s (2004) IRB, states the following: that researchers must provide study subjects or informants with informed consent; that informants must retain rights and control of their data/materials; and in the best circumstances, that informants must be a collaborator in the research.

Conclusion

As we are working toward a just and ethical future in academics, in science, and in our relationships to people within and outside of our own communities, the established ethics require that you not only observe, but reflect and revise as well. In this article, you may note that it argues not only for current best-practices awareness, but also encourages you as a student to consider what we can do better as we move forward.

Practice

Part 1: Creating an Informed Consent Document

Develop an informed consent document for informants in a social-sciences study following the steps below. Use the provided Clayton State University sample form as a reference and create your own practice consent document. Remember, forms are not the only strategy to obtain and confirm informed consent. Consider alternative strategies for your hypothetical informants.

Note: Remember that this exercise is intended for practice purposes only. You do not need to conduct an actual study. The main goal is to familiarize yourself with the process of creating an informed consent form and to reflect on the ethical considerations involved.

1. Access the sample informed consent form from Clayton State University by visiting the following URL: https://www.clayton.edu/about/docs/academic-affairs/consent-template-expedited-full-signed.doc.
2. Download and open the sample form in a word processing software of your choice.
3. Read carefully the entire sample form, paying attention to its structure, content, and language.
4. Use the sample form as a guide to create your own informed consent document for your social-sciences study informants. Ensure that your form includes all the necessary elements for obtaining informed consent.
5. Customize your document by replacing the placeholders with relevant information pertaining to your hypothetical study or practice exercise.
6. Pay attention to your questions’ clarity: make sure that your potential informants can easily understand questions whether they read them on paper or hear them as oral questions.
7. Save your completed informed consent document for the reflection portion of this exercise.

Part 2: Reflection Questions

Reflect on the informed consent form that you just created and your process in developing it. Answer the following questions to deepen your understanding of the ethical considerations in social sciences research.

1. What are the main elements included in an informed consent document? Why are they important?
2. In what ways did the sample Clayton State University informed consent form influence your own form’s structure and content?
3. What challenges did you encounter while developing the informed consent document? How did you address them?
4. How did you ensure that the language used in your form was clear and understandable for potential informants?
5. Reflecting on your process of creating the informed consent document, what ethical considerations did you become more aware of? Why are they significant in social sciences research?

References

Boarding School Tragedy, The. (2020). Native Knowledge 360°, Smithsonian Institution. https://americanindian.si.edu/nk360/code-talkers/boarding-schools/#:~:text=Indian%20boarding%20schools%20were%20founded,the%20government%20or%20Christian%20missionaries

Coronation, the Kohinoor diamond, and its colonial past, The. (May 3, 2023). A1. National Public Radio.

Fletcher, M.-S., Romano, A., Connor, S., Mariani, M., & Maezumi, S. Y. (2021). Catastrophic Bushfires, Indigenous Fire Knowledge and Reframing Science in Southeast Australia. Fire, 4(3), 61. MDPI AG. Retrieved from http://dx.doi.org/10.3390/fire4030061

Gaby, A., & Woods, L. (2020). Toward linguistic justice for Indigenous people: A response to Charity Hudley, Mallinson, and Bucholtz. Language, 96(4), 268-280. https://doi.org/10.1353/lan.2020.0078

Native American Boarding and Day Schools. (2023). Smithsonian Institution Gallery. https://collections.si.edu/search/gallery.htm?og=native-americans&p=native-american-boarding-and-day-schools

Parry, Darren. (2019). The Bear River Massacre: A Shoshone History. BCC; Salt Lake City. Terralingua.org

Roche,  J. (2022) The World’s Languages in Crisis (Redux): Toward a Radical Reimagining for Global Linguistic Justice, Emancipations: A Journal of Critical Social Analysis: Vol. 1: Iss. 2, Article 8.  https://doi.org/10.54718/CWBR5317 https://scholarsjunction.msstate.edu/emancipations/vol1/iss2/8

Sinnot, M. &  Sohini, K. (2023).  Henrietta Lacks’ Immortal Legacy – Graphic Biography. https://www.oerproject.com/OER-Materials/OER-Media/PDFs/SBH/Unit-5/5-3-Ways-of-Knowing-Life/Henrietta-Lacks-Immortal-Legacy-Graphic-Biography?share=link

U.S. Public Health Service Syphilis Study at Tuskegee, The. (2023). Center for Disease Control, CDC. https://www.cdc.gov/tuskegee/index.html#:~:text=The%20U.S. %20Public%20Health%20Service%20(USPHS)%20Syphilis%20Study%20at%20Tuskegee,after%20it%20was%20widely%20available.

What is the purpose of the IRB? (2017). Frequently Asked Questions; Institutional Review Board. https://i.slcc.edu/ir/irb.aspx

Voluntary Informed Consent Resources by Discipline

• American Anthropological Association (AAA) https://www.americananthro.org/ParticipateAndAdvocate/Content.aspx?ItemNumber=1652
• American Association of Geographers (AAG) https://www.aag.org/statement-of-professional-ethics/
• American Medical Association (AMA) https://code-medical-ethics.ama-assn.org/ethics-opinions/informed-consent
• American Psychological Association (APA) https://www.apa.org/ethics/code
• American Sociological Association (ASA) https://www.asanet.org/topic-informed-consent/

Additional Resources

• “We Still Live Here – Âs Nutayuneân, https://www.pbs.org/independentlens/documentaries/we-still-live-here/
• “We Still Live Here’ Details Effort to Restore Wampanoag Language.” (2011) PBS Newshour. https://www.youtube.com/watch?v=eUEj8QrCXzA

Author’s Note

In the spirit of Open Education, several student-generated and institutionally generated Open Educational Resources are cited.