Notes for Teaching Through Henrietta Lacks: Race, Class, and Gender in Biomedical Research

Notes for Teaching Through Henrietta Lacks: Race, Class, and Gender in Biomedical Research

Teaching Through Henrietta Lacks: Race, Class and Gender in Biomedical Research
Katayoun Chamany,
Associate Professor of Biology, Department of Natural Sciences and Mathematics, Eugene Lang College The New School for Liberal Arts. chamanyk@newschool.edu

Hela Cells & HPV Genes: Immortality & Cancer Case Study

Overview: Recent advances in the life sciences present students with an opportunity to engage in real-life debates that require basic biological literary, ethical reasoning, and communication skills. Through collaboration across the natural sciences, humanities, social sciences, and design, we developed and implemented a semester-length non-majors interdisciplinary course titled “Stem Cells and Social Justice” using a case-based approach. This project is funded by the New York State Empire State Stem Cell Board, and will result in the publication of a freely available modular curricular that can be used across the liberal arts. “HeLa Cells & HPV Genes,” is one module that has been delivered in multiple contexts in liberal arts courses that train students to challenge the normative assumptions and practices surrounding new biotechnologies (See Science Education for New Civic Engagement and Responsibilities Model Course http://serc.carleton.edu/sencer/stem_cells_soci/index.html).  The full curricular materials will be available by January 2014 at www.stemcellcurriculum.org .

Pedagogy: With the publication of Rebecca Skloot’s book in 2010, the story of Henrietta Lacks  and the establishment of the first human cell line became part of mainstream conversations  leading many colleges and universities  to select Skloot’s  book as  the core element in first year curricula. As a cell and molecular biologist I have used the HeLa case study to teach basic biological principles concerning cell cycle, cancer and HPV infection within a sociopolitical context. More recently I have explored how this case study can highlight the important role that biology and biotechnology can play in analyzing the intersection of race, class and gender, associated with the Hela narrative and the ways that this knowledge can be applied to present day challenges in biobanking and oocyte provision.

“HeLa Cells & HPV Genes: Immortality & Cancer” uses the 7E learning cycle; elicit, engage, explore, explain, elaborate, evaluate, extend (http://www.phichsinee.cmru.ac.th/7emath/7-E's_instructional_model.pdf). In this case study, students to take on real-life debates surrounding biospecimin banking and the policies surrounding human subjects research as it relates to privacy, ownership, compensation and acknowledgement. The case is comprised of three components that can be used together, or alone, depending on course goals. The three components are discussion, role-play, and critical essay.  Part 1 introduces students to the topic through a discussion based on short readings and video clips using a progressive disclosure approach such that the story of the first human cell line emerges telling alternative narratives. In this discussion, novices are introduced to biological concepts such as the culturing of cells and the complexities of conducting health research in the context of health inequities.(elicit and engage).  Part II asks student to dive deep into the literature to explore and explain to their peers a particular perspective; this is done through a simulated role-play of a conference session at the World Stem Cell Summit, which sought to learn from this case study.  The role–play focuses on communication and allows students to adopt different stakeholders personas and engage in a 60-80 minute dialogue (explore, elaborate, and explain). Part III, the final component encourages critical reflection and asks students to revisit their personal stance on the case after having completed the role-play (evaluate and extend). This case uses a combination of textual and visual resources to explore how social circumstances can lead to health outcomes that result in the development of cancer as well as reviewing the basic biology behind cell immortalization in a Petri dish. The readings span the benefits and risks associated with altruistic human tissue donation or mass banking of clinical samples, the laws and practices currently in place for human subjects research, and the issues surrounding the private and public sector management of payment for these cell sources as well regulation of access to the potential products and knowledge produced from these sources. 

Important Questions Students are Asked to Consider:

  1. Can we challenge the normative assumptions surrounding biomedical research to support more just and informed participation in shaping healthcare practices and policies? 
  2. What roles can individuals and communities play in directing research that serves their needs?