Common Reading Discussions
Common Reading Discussions
"The Immortal Life of Henrietta Lacks" by Rebecca Skloot
Friday, September 2, 2011
Dr. Cynthia Bechtel, Nursing
Whether you approach this book from the viewpoint of a future healthcare professional or as a patient or family member of a patient we will discuss the ethical issues in healthcare today compared to Henrietta’s era. Was Henrietta cared for as an individual? Are patients today viewed as individual persons by healthcare providers or have healthcare providers lost the personal aspects of care? How much should patients be told about their conditions and care? Has HIPAA changed patient care and research and are patients more protected today? Is their information private? Do you understand the term informed consent? Was Henrietta informed about her care? Did ethnic disparity occur in the book and does it continue to occur today? These are issues that will allow lively discussion and change your ideas about healthcare.
Dr. Marian Cohen, Sociology- Closed
At the heart of the story of Henrietta Lacks is the relationship between science and ethics. For medical science to advance, we often must use human subjects. Our goal should always be to treat our subjects ethically. How often do we meet this goal? What mechanisms exist to help us meet the goal? Sometimes, from a research standpoint, there may be a need to conceal information from subjects. How much information about the research and possible outcomes should researchers share with subjects? How much information should researchers withhold from subjects in order not to bias research results? In other words, how do we both promote science and protect subjects?
Dr. Aline Davis, Biology and Dr. Paul Bruno, Psychology and Philosophy
Medical Ethics and HeLa- Closed for registration
During the mid to late 1900’s there are several potential ethical issues surrounding the development and use of the HeLa cell line. For example, was permission needed and/or given to collect the sample from which the cells were isolated from? Was it in the family’s best interest or the scientist’s best interests to release the name Helen Lane instead of Henrietta Lacks? What about privacy issues? Did permission need to be obtained prior to distribution and mass production of the cells? If so, from whom? Who actually owned them? Can you own cells? Can/should the benefits provided to the human population by HeLa cells and the studies that used them outweigh the potential issues surround the collection, use and distribution of the cells? Also, if there were few to no laws or regulations regarding these issues, who is to say that the medical and scientific personnel involved did anything wrong to begin with?
Dr. Michael Enz, Economics and Business
Ethics, Property Rights and patent law
I would like to incorporate some recent studies of consumer behavior and what the studies suggest about ethics. There has been some work done in experimental economics analyzing when people will cheat (whether it differs on the probability of being caught, the type of award being offered, the size of the award, etc) and whether people consider other people's well-being when making consumption decisions (and what that depends on).
For property rights and patent law:
A brief description of why we have these laws and an application to a current issue that is similar to the Lacks story (as far as being medically related), which is gene sequence patenting.
Dr. Lisa Eck, English
"Can you relieve that?" Biography as Therapy, Personal and Political
The first sentence of Rebecca Skloot’s biography The Immortal Life of Henrietta Lacks emphasizes the following: "this is a work of non-fiction." And yet even Skloot herself reflects on how this unconventional biography – the life story of both a woman and her cell line – reads at times like science fiction, or a page-turning detective story. Critics have remarked on the book’s novelistic qualities, while readers may be reminded, in certain chapters, of social science ethnographies such as The Corner, which served as source material for HBO’s series "The Wire." As a genre, science fiction is often credited with making a space for the intellectual and ethical debates that materialize when certain "far-out" plots eventually become reality; witness the invention of the mouse-human hybrid cell-line.
Our session will focus on what makes Skloot’s biography of the woman behind Hela both a good book and an important book. To do so, we’ll focus on specific genre conventions and literary devices most often associated with fiction. For example, if the volume inspires a sense of suspense in the reader, an effect we associate with pulp-fiction genres, such as detective fiction, is that suspense a kind of approximation of the state of "unknowing" Henrietta’s family endured for decades after her death?
Using the basic building blocks of literary meaning – characterization, setting, metaphor, dialogue, etc. - we will consider the revelation, for example, that science is always performed by scientists, and that scientists are, for the sake of analysis, like characters, i.e. social types who possess motivations, both personal and political, informed by their historical setting -- where and when they perform their science. We’ll ask whether the Hela cells themselves take on a kind of metaphoric significance in the text, by suggesting that our heroine, despite her tragic experiences in life, has proven indomitable, unstoppable. Considered in the light of a novel, what role do "minor characters," such as Elsie and Zakariyya, play in the text, and what would be lost if their "plot lines" were cut? Finally, we’ll take time to look at Skloot’s use of dialogue in the text. In the line above, quoted from a poem by Deborah Lacks, recorded in her diary, normative English idiom would translate her intended meaning on the topic of the theft of her mother’s cells as: Can you believe that?, but Skloot preserves the deeper implications of Deborah’s original language: "can you relieve that?" All told, the goal of our session will be to decide whether this biography has proven to be a source of personal therapy for the members
of the Lacks family, and a kind of political "truth-telling" therapy for a growing community of readers.
Dr. Paul Galvin, Psychology
Interconnections and Interdependence
The Immortal Life of Henrietta Lacks is a book about science and people. The author and biographer, Rebecca Skloot, paints a portrait of Henrietta Lacks. While Henrietta’s cancer cells (HeLa) form the motivation for the book, it is the stories of interconnections between the people that carries the reader forward. The question "who was Henrietta Lacks" is revealed through the memories of family and friends as well as through medical records. Henrietta’s life and death has impacted both her children and medical science. Our discussion will focus on the connections that we have with others and how our own lives are interdependent on others, even those we will never know personally or by name. HeLa is more than a collection of cells, Henrietta Lacks has left her mark on this world.
Dr. Chris Gregory, CASA- Cancelled
Reading "The Immortal Life of Henrietta Lacks" with pen or pencil in hand, note the passages that illustrate the seeming contradictions between religious faith and scientific adherence. As the story unfolds, do the cast of characters—the Lacks family members and author Rebecca Skloot—cling to religious OR scientific understanding to explain how Henrietta Lacks and her cells were treated? Or is there an evolution of thought, perhaps growth, on the part of the characters? What has happened to the Lacks’s and Skloot by the book’s end? Finally, in general is there a contradiction between scientific observation and religious faith? Be sure to bring your marked up book with you to our discussion.
Michael Harrison, Economics and Business
Henrietta Lacks lived during a time where laws, regulations and societal norms did not require "informed consent." Most people of the day viewed the medical procedures she endured and the taking of her cells as normal and ethical. It was certainly legal since there were no laws in place at the time to dictate otherwise. History and current day show that laws and regulations often fail to keep pace with advances in science and technology. As a result certain individuals or groups of individuals may be exposed to or subjected to undesirable treatment as a price to pay for the "greater good" of society or for the good of a larger group of individuals. Scientists, inventors, and business people often develop products and services that, while legal, may be seen as unethical or push the envelope of privacy and ownership rights. During this session we will explore and compare technological, regulatory and societal changes from the life and time of Henrietta Lacks through our more recent history to present day, in context of how government regulations, laws, societal norms and businesses interact.
Dr. Elaine Hartwick, Associate Professor and Chair of the Geography Department
Spatial Politics of the slogan "Think Globally Connect Locally" As Local as the Body.
The slogan I am playing on is "Think Globally and Act Locally" a catchy phrase for creating awareness of the spatial connection we all share on this earth. Yet, for many years this is exactly what did not happen with the HELA connection. The author, Rebecca Skloot, raises so many key issues involved with the study of spatial relations and spatial connections.
Over the past fifteen years part of the local study of Geography has been on the individual and the body. This book illustrates this and we will discuss the spatial politics of the body, the connection of the local as a cell to the global prospect of medicine and profit. How might we, as individuals, understand what is meant by patenting the body and plants within the domain of the global economy. So, come and discuss with me what you think of this spatial connection, the disconnect, the distancing of this knowledge and the ethical ramifications of this. What would you advocate for in this globally connected world? All is more local than you think!
Dr. Lorretta Holloway, English
"Holding it All Together": Narrating The Immortal Life of Henrietta Lacks
It took over ten years for Rebecca Skloot to complete this book, and she has been quoted as having points where she thought it would take her until she was 90 years old to finish. In this discussion, we take a look at the choices she made as a writer to present this history, her looking to both fiction and non-fiction for structure ideas, her choice to have three parallel narratives running throughout, her choice to put herself in the narrative as a "character" (something, she herself does not recommend to her students), and any other rhetorical choices that students think are compelling. We will begin our session with a video of an interview with Skloot about her writing technique and choices and then discuss how her choices ultimately affect how we read her text and see the life of Henrietta Lacks and her family. Students may find looking at the following link helpful: http://www.niemanstoryboard.org/2010/07/16/rebecca-skloot-immortal-life-of-henrietta-lacks-interview-narrative/.
Dr. Virginia Rutter, Sociology
Research Ethics: HeLa vs Sex Research
*The Immortal Life of Henrietta Lacks* is a riveting book, a real page turner, making the drama of science and life so personal. As a sex researcher and professor in the sociology department at FSU, I was especially engaged by the questions about how we treat the people we study—as well as how we think of the topics that we study. Please feel welcome to come to a discussion of research ethics and why scientific (including social scientific) research can be influenced by biases in the larger culture. What kind of knowledge does research give us? Why does knowledge matter? What are human values that should be remembered when doing research—and are there conditions when those human values can be subordinated? Who should decide? I'll explain how the issues raised with HeLa are similar to issues raised in doing sex research, and ask you to think of examples of science and research ethics puzzles that you think relate.
Dr. Claudia Springer, English Department
Conflict & Comfort- CLOSED for registration
When doctors gather cells from patients without obtaining their consent, what are the ethical issues? We'll discuss the central conflict raised by The Immortal Life of Henrietta Lacks: the right of patients to control the use of their cells versus the right of scientists to conduct research. Another theme in the book is the importance of images. Deborah Lacks treasures the few photos she has of her mother and sister, and she and her brother Zakariyya are moved by the photo of their mother's chromosomes given to them by a researcher. At the same time, Deborah is alarmed by the images she sees in the films Jurassic Park and The Clone. We'll talk about the power of pictures to fascinate, confuse, frighten, mislead, delight, and comfort us.
Dr. Ellen Zimmerman, Academic Affairs
Rebecca Skloot’s nearly ethnographic account of the Lacks family does what every anthropological fieldworker aims for. Her rich, thick description of the people and their lives brings the world and worldview of the Lacks family into sharp relief against the "cloud of unknowing" covering much of mainstream American culture. She humanizes those who have been regarded as the alien "other" by many Americans and reveals them as thinking, feeling people any reader can begin to understand. While she is not an anthropologist, Skloot quite effectively does the anthropologist’s job of helping lead others to the same understanding she has gained through her extensive and intimate connection with people whose experiences differ greatly from her own. In doing this, she also leads us to examine the ethics of scientific research, which, when we can regard subjects as the "other," it is easier to ignore. While research using human subjects is necessary to further scientific study and treatment of human illnesses, it is interesting to look at who these human subjects tend to be. Both in the United States and internationally, the groups involved as medical research subjects often have been the same groups that are more frequently incarcerated, exploited, and otherwise victimized. In other words, they are often groups who are relatively powerless - the poor, the imprisoned, and minorities. We will look at the experiences of the Lacks family in the wider context of global inequities surrounding medical testing and treatment.
