1.6 Ethics, Multiple Lenses and the Importance of Social Justice in Science
Learning Objectives
By the end of this section, you will be able to:
- Understand the importance of using a social justice lens in the sciences.
- Describe the Tuskegee syphilis study
- Understand the story of Henrietta Lacks and the contirubutions of the HeLa cell to modern science.
- Explain the importance of patient consent.
- Define and describe the importance of bioethics.
- Define Traditional Ecological Knowledge and explain the importance of collaborations between Indigenous and Western sciences.
Scientific Ethics
Scientists must ensure that their efforts do not cause undue damage to humans, animals, or the environment. They also must ensure that their research and communications are free of bias as much as possible and that they properly balance financial, legal, safety, replicability, and other considerations. Bioethics is an important and continually evolving field, in which researchers collaborate with other thinkers and organizations. They work to define guidelines for current practice, and also continually consider new developments and emerging technologies in order to form answers for the years and decades to come.
Unfortunately, the emergence of bioethics as a field came after a number of clearly unethical practices, where biologists did not treat research subjects with dignity and in some cases did them harm. In the 1932 Tuskegee syphilis study, 399 African American men were diagnosed with syphilis but were never informed that they had the disease, leaving them to live with and pass on the illness to others. Doctors even withheld proven medications because the goal of the study was to understand the impact of untreated syphilis on Black men.
While the decisions made in the Tuskegee study are unjustifiable, some decisions are genuinely difficult to make. For example, bioethicists may examine the implications of gene editing technologies, including the ability to create organisms that may displace others in the environment, as well as the ability to “design” human beings. In that effort, ethicists will likely seek to balance the positive outcomes — such as improved therapies or prevention of certain illnesses — with negative outcomes.
Bioethics is not simple, and often leaves scientists balancing benefits with harm. In this text and course, you will discuss scientific discoveries that, at their core, have what many consider an ethical lapse. In 1951, Henrietta Lacks, a 30-year-old African American woman, was diagnosed with cervical cancer at Johns Hopkins Hospital. Unique characteristics of her illnesses gave her cells the ability to divide continuously, essentially making them “immortal.” Without her knowledge or permission, researchers took samples of her cells and with them created the immortal HeLa cell line. These cells have contributed to major medical discoveries, including the polio vaccine and work related to cancer, AIDS, cell aging, and even very recently in COVID-19 research. For the most part, Lacks has not been credited for her role in those discoveries, and, until recently, her family has not benefited from the billions of dollars in pharmaceutical profits obtained partly through the use of her cells.
Today, harvesting tissue or organs from a dying patient without consent is not only considered unethical but also illegal, regardless of whether such an act could save other patients’ lives. Part of the role of ethics in scientific research is to examine similar issues before, during, and after research or practice takes place, as well as to adhere to established professional principles and consider the dignity and safety of all organisms involved or affected by the work.
Watch this video to learn more about Henrietta Lacks and the Lacks family
Multiple Lenses
Western Science is the most dominant science in the world today and is widely thought of as the “officially sanctioned science.” Although Western Science has greatly benefited global society, it has also been implicated in many of the world’s ecological disasters—pesticide contamination, introduced species, dams and water diversions that have impacted salmon and other indigenous species—, and, as you read above, has in some instances perpetrated injustice and harm. Reliance on Western Science alone is problematic because only using Western Science to understand the world presents a limited, incomplete view. Exploring different versions of what science is, and what counts as scientific by considering perspectives from cultures other than Eurocentric western society provides great potential for enhancing our ability to address global issues and to develop more relevant science education with which all students can identify.
Indigenous Knowledge
It is important to balance and consider Indigenous Science, that which recognizes the knowledge inherent in each culture: “every culture and every society has its own science, and its function is sustaining its mother society and culture” (Yamada, 1970, p. 585). Cultural diversity suggests that Western Science and Indigenous Science should be viewed as co-existing or parallel. “Indigenous Science makes up a significant part of the greater body of knowledge often called Indigenous Knowledge, which is the sum of cultural knowledge and wisdom held by Indigenous peoples of the world. It contains all that can be encompassed by a unique worldview, such as values and beliefs, creative expression, history, political and economic systems, and human relationships as well as science. While it is rooted in historical knowledge, it is also dynamic and growing” (the First Nations Education Steering Committee and First Nations Schools Association, 2019, p.12).
Key features of Indigenous Science:
- Traditional Ecological Knowledge
- Language and Story
- Reciprocal Relationships
- Interconnectedness
- Transformation and Renewal
- Sense of Place
Traditional Ecological Knowledge (TEK)
According to the First Nations Education Steering Committee and First Nations Schools Association (2019):
Traditional Ecological Knowledge denotes the vast local knowledge Indigenous communities have about the natural world found in their traditional environment. TEK is local knowledge based in people’s relationship to place. It is holistic. Knowledge about a specific plant may include understanding its life cycle, its spiritual connections, its relationship to the seasons and with other plants and animals in its ecosystem, as well as its uses and its stories. TEK is widely used in biological and environmental sciences, and is largely considered to be complimentary to, and equivalent with, Western scientific knowledge. The environmental knowledge of generations is important to fields such as environmental resource management, climate change and sustainability. It is also important to recognize that TEK is the intellectual property of the indigenous communities who hold it.
Recognition of the importance of incorporating Indigenous Science and TEK in environmental planning is explicitly addressed in international reports and agreements, such as the document Science for the Twenty-first Century: A new Commitment (UNESCO: United Nations Educational, Scientific and Cultural Organization, 2000), which set new standards for respecting, protecting and utilizing Indigenous Knowledge. Working scientists in the US, Canada, Middle and South America, Africa, Europe, Australia, New Zealand, India, Russia, China and Japan, are collaborating with Elders and knowledge holders to collect and document examples of TEK and Indigenous Science. (p. 13)
Watch this video to see Indigenous Science in action.
Social Justice
According to Tacoma Community College’s Common Language Glossary, social justice means “movement toward equity regarding the distribution of wealth, opportunities, and privilege within a society.” Considering scientific concepts and the history of Western Science through a social justice lens helps us acknowledge and bettter understand and analyze historical and current inequities related to the sciences. It also provides a framework to help us identify implicit biases in scientific instituitions, concepts, practices, and policies, as well as support us in finding equitable solutions to issues related to the sciences. The Tuskegee study, Henrietta Lacks’ story, and the loss of indigenous ways of knowing through forced assimilation are just a few examples that have contributed to major disparities in medical and environmental justice for communities of color.
Watch this Tedtalk by Jedidah Isler to learn about how she became the first black woman to earn a PhD in astrophysics from Yale and to learn more about her belief in the value of diversity in STEM fields.
You Choose:
Pick one of the following articles to read to expand your knowledge on the importance of social justice in science.
- Can Indigenous knowledge and Western science work together? New center bets yes
- Drag and science unite as LGBTQ researchers bring their work to the stage — for inclusion
- Democratize the White Coat by Honoring Black, Indigenous, and People of Color in Science
- Community Science is a Powerful Tool for Conservation
Glossary
bioethics: the study of ethical, social, and legal issues that arise in biomedicine and biomedical research
consent: giving permission for something to happen or agreement to do something
climate change: a long-term change in the average weather patterns that have come to define Earth’s local, regional and global climates
dignity: the state or quality of being worthy of honor or respect
ecosystem: biological community of interacting organisms and their physical environment
equitable: fair and impartial
forced assimilation: when a government or other authority forces a minority or Indigenous group to give up their cultural identity and adopt the dominant culture’s language, norms, and customs
HeLa cell: the first “immortal” human cell line and the basis for countless significant scientific discoveries. The cancerous cell were taken in 1951 from a 30 year old African American woman named Henrietta Lacks without her informed consent during a routine biopsy. HeLa cells have the unique ability to continuously grow and divide in the laboratory making them incredibly useful for scientific research. The cells were later named “HeLa” after the first two letters of Henrietta Lacks’ first and last name.
holistic: characterized by the belief that the parts of something are interconnected and can be explained only by reference to the whole
Indigenous Science: the knowledge and practices of Indigenous peoples that are based on their cultural traditions and relationships to the environment. It relies more heavily on subjective and qualitative data than Western Science and tends to be shared orally, passing from one generation to the next by the elders.
Traditional Ecological Knowledge (TEK): the vast local knowledge Indigenous communities have about the natural world found in their traditional environment
implicit bias: negative associations, assumptions, and/or stereotypes that people unknowingly hold. They are expressed automatically, without conscious awareness. Implicit biases affect individuals’ attitudes and actions, creating real-world implications, even though individuals may not even be aware that those biases exist within themselves.
inequity: (inequities plural) lack of fairness or justice
intellectual property: original property (such as a concept, idea, invention, or work) that derives from the effort of the mind or intellect
environmental resource management: the management of the interaction and impact of human societies on the environment
Social justice: movement toward equity regarding the distribution of wealth, opportunities, and privilege within a society
STEM fields: academic and professional discipline related to science, technology, engineering, and math
sustainability: the ability to manage natural resources in a way that meets current needs without compromising the ability of future generations to meet theirs
Tuskegee syphilis study: The purpose of the study was to observe the natural history of untreated syphilis in Black people. The study was conducted without informed consent. Hundreds of Black men in Alabama were left untreated for syphilis for 40 years, leading to many deaths and the spread of syphilis within families. The study is considered one of the most infamous cases of medical racism and abuse in U.S. history. Public moral outrage over the study, led to Congress passing the National Research Act in 1974, which established federal rules to protect human research participants and created the National Commission for the Protection of Human Subjects.
Western Science: also know as modern science or international science, was developed in Europe, in particular over the last 150 years. It is the system of knowledge which relies on certain laws that have been established through the application of the scientific method to phenomena in the world around us. Broadly, it refers to knowledge typically generated in universities, research institutions and private firms that utilize western scientific practices. It favors objective and quantitative data and is shared through academic reasearch and writting.
References
Biology and the Citizen (2023) Copyright © 2022 by Utah State University is licensed under a Creative Commons Attribution 4.0 International License, except where otherwise noted.
Knowing Home: Braiding Indigenous Science with Western Science, Book 1 by Gloria Snively and Wanosts’a7 Lorna Williams (CC-NC-SA)
Excerpts from Secondary Science First Peoples Teacher Resource Guide Copyright @ 2019, First Nations Education Steering Committee and First Nations Schools Association were included under “fair use” guidelines.