To explore the issue of ethics in medical research and, in particular, the issue of informed consent, in the context of Henrietta Lacks and the HeLa cells.
This lesson uses the book, The Immortal Life of Henrietta Lacks, written by Rebecca Skloot, which is one of the winners of the 2011 SB&F Prize for Excellence in Science Books. SB&F, Science Books & Films, is a project of the American Association for the Advancement of Science.
The ubiquitous cell line HeLa (whose immortality provides the book title) has helped power the explosive growth of cell biology for more than 50 years. But for all that is known about the cells themselves, most people know little if anything about the history and the woman behind these cells. In her book, investigative reporter Skloot explores the mystery behind HeLa cells (pronounced hee la), her obsession with telling the real truth about Henrietta Lacks, and the scientists, doctors, and institutions involved in this fascinating story that revolves around Lacks’ cervical cancer cells.
It’s a story the students won’t soon forget, which is exactly what happened to Rebecca Skloot. She first heard about HeLa cells at age 16 while attending a community college biology class. Her professor told the class that HeLa cells were the most famous cells ever, and that they came from an African American woman who died of cervical cancer. That was all he knew, and Skloot immediately wanted to know who the “donor” was, where she came from, if her family knew her cells were still alive, and what her real name was. (Until Skloot’s book, Lacks was pretty much anonymous.)
Years went by before Skloot had the resources to pursue this mystery, but once she started uncovering the story, she didn’t give up, and a decade of research resulted in this award-winning book.
In this lesson, students will read The Immortal Life of Henrietta Lacks and learn what bioethics is and how it has influenced cellular research from the 1950s until now. They will learn what informed consent is and its importance to researchers and patients. They will learn how a major piece of science history has impacted their lives on an individual level. And although they may have heard about the Tuskegee Syphilis Study (which took place at the same time and institution as Lacks’ story), they also will gain a better understanding of the history behind that medical experiment and its influence on current ethics.
Students should begin this lesson with a basic knowledge about what cells are and how they function. If you feel that your students need to review this knowledge, ask them to answer the questions on the Explaining DNA student sheet in the Extracting DNA science lesson. This student sheet also asks students to create a poster explaining DNA to someone unfamiliar with it.
Ideas in this lesson are also related to concepts found in these Common Core State Standards:
- CCSS.ELA-Literacy.RST.11-12.1 Cite specific textual evidence to support analysis of science and technical texts, attending to important distinctions the author makes and to any gaps or inconsistencies in the account.
- CCSS.ELA-Literacy.RST.11-12.2 Determine the central ideas or conclusions of a text; summarize complex concepts, processes, or information presented in a text by paraphrasing them in simpler but still accurate terms.
- CCSS.ELA-Literacy.RST.11-12.6 Analyze the author’s purpose in providing an explanation, describing a procedure, or discussing an experiment in a text, identifying important issues that remain unresolved.
- CCSS.ELA-Literacy.RST.11-12.7 Integrate and evaluate multiple sources of information presented in diverse formats and media (e.g., quantitative data, video, multimedia) in order to address a question or solve a problem.
- CCSS.ELA-Literacy.RST.11-12.9 Synthesize information from a range of sources (e.g., texts, experiments, simulations) into a coherent understanding of a process, phenomenon, or concept, resolving conflicting information when possible.
Using the HeLa student esheet, students should begin this lesson by reading Henrietta Lacks' “Immortal” Cells, which is an interview with the author that summarizes the book and the story behind HeLa cells.
Use this interview to begin a class discussion about HeLa cells.
- What differentiates HeLa cells from other human cells?
- (They never die.)
- Henrietta’s doctor removed her cancer tissue during an autopsy and didn’t tell her family. Do you think he should have asked her family for permission and why?
- (Answers may vary. Encourage students to explain their answers.)
- How would you define informed consent?
- (It is getting permission from individuals to use their tissues or perform a procedure on them, and making sure they fully understand what it is they are agreeing to allow the doctors to do.)
- If you go to the dermatologist and he or she removes a mole, what do you think is done with that tissue sample?
- How would you define bioethics?
- (It is the moral principles that guide biological research and how these principles are upheld in the field of medicine.)
- (Most likely it’s sent to a tissue bank where it can be used for research.)
In this part of the lesson, students will learn more about the case of Henrietta Lacks by reading the book. Before they do so, have students read Skloot’s article, Taking the Least of You, which discusses other legal cases where patients fought for control over their cell tissue. Once students have read this article, you should engage them in a discussion using the questions on the HeLa teacher sheet (students can record their responses on the HeLa student sheet).
Once you have had this discussion with students, use the Debate Form from the Northwest Association for Biomedical Research to lead students in a debate about patient rights regarding using human tissue for research.
Now that students have a basic understanding of HeLa cells and the story behind them, have them read The Immortal Life of Henrietta Lacks. They should use the HeLa Reading Log student sheet to guide them as they read. The reading log guides students through the book, which is divided into three parts. The reading log follows this layout. You may want to suggest that students stop after reading each part and discuss the questions in class. You can find suggested responses to the questions on the HeLa Reading Log teacher sheet.
To assess students’ understanding of ethics in research, have them perform one of these two suggested activities:
- Read Ethics in Research and write an essay about the voluntary and involuntary participation in medical research. Have students use the matrix at the end of the Key Concepts student sheet to guide them in writing the essay (you can find definitions for the concepts on the Key Concepts teacher sheet). Ask them to define the key concepts listed in the table and then incorporate those in their essay to demonstrate understanding of the concepts.
- Watch the video Informed Consent and Medical Research. Different cultures hold different beliefs about health, religion, and death, as shown in the video. In some cultures, if a person is terminally ill, the family members may tell the doctors they do not want that person to know they are dying for fear the person will give up and die. This is called a right not to know.
Ask students to write an essay exploring the question, "If you had a terminal illness, would you want to know? Why or why not?" Have the students use the matrix at the end of the Key Concepts student sheet to guide them in writing the essay. Ask them to define the key concepts listed in the table and then incorporate those in their essay to demonstrate understanding of the concepts.
Genetic testing is a controversial subject. The Science NetLinks lesson Ethics and Reproductive Issues: The Dilemma of Choice looks at three situations in which prenatal testing may be used to prevent or facilitate pregnancy.
Extracting DNA helps students understand DNA by modeling the process of DNA extraction.
In addition to a patient’s right to know, there is the patient’s right not to know. Ask students to explore this issue by reading Confronting a Fetal Abnormality: Reflections by Doha Raik Hamza and writing an essay about the right to know versus the right not to know.
Using the book The Immortal Life of Henrietta Lacks, students could write an essay about the HeLa cells and how they have influenced scientific research. They can also conduct their own research to learn more about the cells.