Cells, Race and Stories: A Discussion with Priscilla Wald about Henrietta Lacks and the HeLa Cell Line

Priscilla Wald (Duke, English and the Center for Genome Ethics, Law and Policy)

Monday, February 6, 2012

Engineering 2, 599

4:00-6:00 PM

This event is co-sponsored with Cultural Studies, Center for Biomolecular Sciences and Engineering—Research Mentoring Institute, and the Molecular, Cellular and Developmental Biology Department.

Priscilla Wald, "Cells, Race and Stories: A Discussion about Henrietta Lacks and the HeLa Cell Line"
SJWG Rapporteur Report
6 February 2012
Rapporteur: Martha Kenney, History of Consciousness
Priscilla Wald, Professor of English at Duke University, spoke to us about the ethical
implications of the Henrietta Lacks case, which has recently become widely known due to the
popularity of Rebecca Skloot’s book, The Immoral Life of Henrietta Lacks. Henrietta Lacks was
a black woman born in 1920 in Virginia, whose cancer cells were used to develop an immortal
cell line known as HeLa cells. Although these cells became important to biomedical research,
Lacks herself died of cancer on a segregated hospital ward in 1951. Neither Lacks nor her
family knew that the cells were taken from here nor did they profit from the HeLa cell line. This
case has become a touchstone for many people in thinking about bioethics in the 20th and 21st
centuries.

Wald argued that many of the stories about Lacks do not help us address key issues of science
and justice. For example, some stories center around medical wrongdoing; however, it is not
clear what the specific wrongdoing was or how it could have addressed. When accounts focus
on wrongdoing they often imply that Lacks should have been treated better because she had
“special cells.” According to Wald, these stories miss the role that institutionalized racial
inequality played in the Lacks case along with hundreds of thousands of other, less spectacular
cases.

Wald’s own approach to narrating the Henrietta Lacks is located in a tradition that focuses on
structural violence. Thinkers in this tradition map the differential effects of the power through
stratified populations, analyze the language through which these structures appear to be
unchangeable, highlight where we have the responsibility to change it, chart the continuing
abuses of structural inequality, and call for reparative measures in the present for violence of the
past. Wald wants to use this model of critique as a means to redress (which has flourished in
ethnic studies) as a model for understanding scientific change and biopolitics.

Wald believes we need to pay attention to what kinds of stories are being told about Lacks and
the HeLa cell line and think about how structural racism figures in these stories. Wald gave
examples of how, after the disclosure that the cell line was developed from Lacks’ tissue, that the
cells themselves became gendered, racialized and sexed. When it appeared that HeLa cells were
making their way into other cell lines and biological specimens in laboratories, negative
language was used to describe the situation. It was said that HeLa cells were “virulent” and
“ruined” other cell lines. Racial overtones were especially evident in a case where a white
baby’s cells were “contaminated” with HeLa cells and appearing biologically “black,” leading to
racist humor about sexual promiscuity and uncertain paternity. When HeLa cells showed up in
Russian cell lines, they were figured as out of control American agents, cellular Mata Haris.
Wald argued that these racialized stories are taking the focus off of real-world solutions to
biomedical disparity. For example, talking about the Lacks case in terms of “bioslavery,”
spectacularly summoned the past to conjure a dystopian future where our tissues were no longer
our own property. According to Wald these kind of stories deflect attention from how historical
racism is still at work in the present. She argued that we should be having a better debate about
the healthcare system rather than entertaining anxieties about a sci-fi future. Wald concluded by
arguing that we should pay attention to institutional racisms and structural violence and endeavor
to turn critique into change. We need better stories that combine this kind of critique with a
belief in new possibilities.

During the discussion audience members were interested in what Wald meant by stories and
what it means to intervene at the level of the story. Sandra Harvey, who was struck by the pain
of Lacks’ family in Skloot’s book, asked how scientists could understand their pain as a way into
the justice questions. Jake Metcalf wondered if scientists have particular justice obligations in
biomedical matters. Donna Haraway argued that scientists are more responsible because
knowledge carries obligations and stories are important because they evoke the ability to care in
thicker ways. One biologist wondered what the “take home message” of the talk was and what
he was capable of doing to promote social justice. Martha Kenney affirmed her belief in
storytelling, but wondered what other caring practices scientists and others could do alongside
telling good stories. The discussion foregrounded the complex relationship between stories,
science, and biomedical justice.

Another World is Plantable! Film Screening with director Ella von der Haide

Another World is Plantable! Part 4

Documentary on Community Gardening and Food Justice in North America 2010

Thursday 10/27, 4:30-6:30 PM, Studio C (Room 150 in Communications Building)

Director: Ella von der Haide

In a series of four documentaries, Ella von der Haide features urban community gardens and their connections to emancipatory social movements in South Africa, Argentina, Germany and North America.

Urban community gardening is a phenomenon that is spreading throughout the world. At the core of the films are gardening activists who explain how and why their gardens are a “green oasis” within the city, as well as projects of resistance that bring “another world” into being. The films also show the critical and ambivalent ways in which the gardening movements can be instrumented by neoliberal regimes.

North America has a vibrant community garden scene that is currently developing into a broad social movement for food justice. Through the local production of ecological food for subsistence and for sale at farmers’ markets, community gardeners not only construct an alternative to the agro-industrial business and “food deserts”, they simultaneously create a new local self-reliance and new discourses on justice.

The community gardens portrayed in this film, in New York, Detroit, San Francisco and Vancouver, are all engaged in different social change processes, from anti-racist resistance and post-colonial healing to indigenous self-determination and queer-feminist environmental politics.

The director will be present for Q&A.

More information on the film and research: www.communitygarden.de

Information on the director:

Ella von der Haide is a Dipl.-Ing. of Urban and Regional Planning, Garden Activist and feminist Filmmaker from Germany.

Contact: post@ella-von-der-haide.de

Sponsored by: SJWG, Film & Digital Media, and Center for Agroecology and Sustainable Food Systems

Information, but Meaning? The Value of Genomics

Andro Hsu with discussion by Ted Goldstein and Whitney Boesel

November 9, 2011

Engineering 2, Room 599

4:15-6:15 PM

Andro Hsu (VP of Products at GigaGen and former science writer and policy advisor at 23andMe) will join us for a discussion of what we are learning—both about policy/society and biology—as increasing resources are put into turning the ever growing amounts of genomic information into something of value. Ted Goldstein, PhD candidate at the UCSC Center for Biomolecular Sciences and Engineering, will provide a response to Hsu presentation.

Vibeke Pihl: Modeling pigs and humans

Modelling pigs and humans: Exploring the practices of models across sciences

Wednesday October 19, 2011

Engineering 2, Room 499

PhD Fellow Vibeke Pihl, Medical Centre for Science and Technology Studies, Department of Public Health, University of Copenhagen.

Vibeke Pihl’s research addresses how connections between humans and animals are shaped in contemporary biomedical research on human health. During an ethnographic multi-sited fieldwork, Vibeke has followed a group of Danish biomedical researchers working to establish a pig model for human obesity surgery. In biomedicine, the pig is increasingly established as a preferred model organism in biomedical research on human obesity due to an argued biological resemblance between pigs and human anatomy and physiology. The topic of the SJWG event concerns an analysis of how the use of pigs as models for humans does not rest solely on biological connections, but requires social, moral, economical and cultural connections to support the choice of the pig as the appropriate model for obese human bodies. In addition, the presentation will address how models are practised in biomedical science and social science. Drawing upon fieldwork, the presentation will focus on how the analysis of the biomedical researchers’ establishment of a pig model prompt a simultaneous crafting of a social scientific model of human-animal relations. Vibeke asks which connections between humans and pigs are included and excluded in the research practices of biomedical scientists’ and the practices of social scientists like her own. With this presentation, Vibeke wants to provide an opening for a stronger mutual engagement between researchers across sciences working with animals as models of humans.

Comparative Tinkerings: A Roundtable

Comparative Tinkering: A Roundtable

Tuesday, October 25th, 2:30 p.m. to 5 p.m.

UCSC Campus, Social Sciences 1, Room 261 (Anthropology’s Colloquium Series room)

Speakers: Karen Barad (UCSC, Feminist Studies), Alan Christy (UCSC, History), Lawrence Cohen (UC-Berkeley, Anthropology), Andrew Matthews (UCSC, Anthropology), Danilyn Rutherford (UCSC, Anthropology), Warren Sack (UCSC, Film & Digital Media), Anna Tsing (UCSC, Anthropology)

Facilitators: Peter Lutz (IT University of Copenhagen, Technologies in Practice) and Heather Swanson (UCSC, Anthropology)

Abstract:

Comparisons are utterly pervasive in anthropology and its neighboring disciplines, including science studies and the sciences more broadly. We compare incessantly, yet we rarely theorize explicitly about our comparative practices. For instance, how do we determine the whats and the whos of our comparisons? At this roundtable we hope to unfold these practices by exploring the risks and virtues of comparison, especially those emerging in empirical travels like ethnographic fieldwork. What are the analytical detours of our comparative ventures? What work is required to render objects stable and comparable? What are the natures of the comparable beings we evoke and harness? Stability is arguably one of the most once deeply problematic yet virtually inescapable aspects of scientific comparison. Yet how might we make do with comparisons – themselves knots of relations – to reveal their underlying messy travel from desk to field and back again? Here we are particularly eager to explore the possibilities of tinkering with comparisons so that they might destabilize and move.

Sponsored by: SJWG and the Anthropology Department

John Kadvany: A Very Brief Introduction to Risk

Wednesday, October 5, at our normal time and place (Eng 2 599. 4:15-6:15).

John Kadvany will join us to discuss the concept of risk. Oxford University Press recently published John’s book on risk, entitled Risk: A Very Short Introduction. Given that so many of us in the group are interested in thinking well about risk–whether in the context of genomics or the climate or engineering design–we are particularly pleased to have John kick the year off.

Click here for an introduction to some of John’s ideas about risk.

Kadvany often works on project teams organized by an engineering company in charge of a large public works project. His role is to design and help implement a decision process in which engineers, external stakeholders, lawyers and regulators work their collective way through multiple competing options in an efficient, democratic and cooperative manner. He will design an analytical framework that’s useful all around including the measurement techniques which can be used to accommodate relevant models, data, and professional or lay judgment of various qualities. Often these processes lead to a group “opinion survey”, a combined technical-policy document which summarizes stakeholder perspectives. His methods combine the analytical techniques of multiple values decision analysis with the approaches developed in the last two decades through the public participation movement.

Banu Subramaniam – Tracking Ghosts: Hauntings from a Eugenic Past

Tracking Ghosts: Hauntings from a eugenic past

Banu Subramaniam (UMass Amherst)

May 11, 2011, 4:30-6:30

Engineering 2, 599

What do morning glory flowers or exotic plant and animal species have to do with the history of race or eugenics? In this talk, I trace the genealogies of ecology and evolutionary biology to explore how histories of gender and race shape contemporary biological theories and what lessons we can learn about the relationships between natures and cultures.

Banu Subramaniam is associate professor of Women, Gender, Sexuality Studies at the University of Massachusetts, Amherst. She is coeditor of Feminist Science Studies: A New Generation (Routledge, 2001) and Making Threats: Biofears and Environmental Anxieties (Rowman and Littlefield, 2005). Trained as a plant evolutionary biologist, she seeks to engage the social and cultural studies of science in the practice of science. Spanning the humanities, social sciences, and the biological sciences, her research is located at the intersections of biology, women’s studies, ethnic studies and postcolonial studies. Her current work focuses on the genealogies of variation in evolutionary biology, the xenophobia and nativism that accompany frameworks on invasive plant species, and the relationship of science and religious nationalism in India.

Michael Mateas: Gaming and the Sociological Imagination

Wednesday, March 9, 4:15-6:15 pm
599 Engineering 2

Michael Mateas runs the Expressive Intelligence Studio at UC Santa Cruz, which explores the intersection of artificial intelligence, art, and design. Their goal is to create compelling new forms of interactive art and entertainment that provide more deeply autonomous, generative, and dynamic responses to interaction. A major thrust of this work is advanced artificial intelligence (AI) for video agames, including autonomous characters and interactive story telling. By viewing AI as an expressive medium, their work raises and answers novel AI research questions while pushing the boundaries of the conceivable and possible in interactive experiences. Current projects in the group include automated support for game generation, automatic generation of autonomous character conversations, story management, and authoring tools for interactive storytelling.

Scout Calvert: Standardization on the Hoof

Standardization on the Hoof: Pedigrees, Genetic Disease, and Genomic-Enhanced EPDs

Scout Calvert (Wayne State University)

April 13, 2011

Engineering 2 599, 4:30-6:30

The SJWG is very pleased to welcome back Scout Calvert, who was one of our original members and earned her PhD from History of Consciousness.

Abstract: For decades, beef breed associations have been gathering performance data on registered animals that have become the basis for “expected progeny differences,” calculations made by comparing the cattle in electronic pedigrees, or herdbooks. The American Angus Association began digitizing its herdbook in the 1960s. In 1978, it launched the Certified Angus Beef branding program, a marketing promotion that has successfully made the Angus breed co-extensive with succulent beef through a voluntary certification process, and which enables small but important premiums for beef growers. As EPDs became popular tools for the selection of artificial insemination sires, three genetic diseases reached frequencies of 10% or more in the pure-bred population. EPDs coordinated a shared quest for Angus certification that also resulted in a catastrophic narrowing of the Angus gene pool. Still reeling from the identification of these three diseases since 2008, in 2010, the Angus Association introduced Genomic-Enhanced EPDs. These pedigrees now include data from genetic markers for desirable phenotype characteristics, an innovation with ramifications for animal breeders and human genealogists alike.