New Book! Private Bodies, Public Texts: Race, Gender, and a Cultural Bioethics

Private Bodies, Public Texts: Race, Gender, and a Cultural Bioethics
by Karla FC Holloway
Duke University Press
248 Pages

Description

In Private Bodies, Public Texts, Karla FC Holloway examines instances where medical issues and information that would usually be seen as intimate, private matters are forced into the public sphere. As she demonstrates, the resulting social dramas often play out on the bodies of women and African Americans. Holloway discusses the spectacle of the Terri Schiavo right-to-die case and the injustice of medical researchers’ use of Henrietta Lacks’s cell line without her or her family’s knowledge or permission. She offers a provocative reading of the Tuskegee syphilis study and a haunting account of the ethical dilemmas that confronted physicians, patients, and families when a hospital became a space for dying rather than healing during Hurricane Katrina; even at that dire moment, race mattered. Private Bodies, Public Texts is a compelling call for a cultural bioethics that attends to the historical and social factors that render some populations more vulnerable than others in medical and legal contexts. Holloway proposes literature as a conceptual anchor for discussions of race, gender, bioethics, and the right to privacy. Literary narratives can accommodate thick description, multiple subjectivities, contradiction, and complexity.

Table of Contents

Preface xv
Acknowledgements xxi
Introduction. The Law of the Body 1
1. Bloodchild 25
2. Cartographies of Desire 67
3. Who's Got the Body? 101
4. Immortality in Cultures 137
Notes 173
Bibliography 199
Index 211

Endorsements

“Private Bodies/Public Texts is as powerful as it is beautifully written. Karla FC Holloway’s is a very different kind of bioethics, one that challenges us to think both more broadly and more specifically about what privacy and justice mean. And she reminds us, with sometimes piercing insight, just how critical gender and race can be in making meaning out of both.”
—Ruth R. Faden, Director, Johns Hopkins Berman Institute of Bioethics

“Private Bodies/Public Texts is an illuminating meditation on the social construction of personal identity, with special focus on gender and racial categorizations in biomedical ethics. Drawing on diverse sources from medicine, law and literature, Karla FC Holloway shows how devalued gender and racial identities not only set the stage for past biomedical abuses but are ironically replicated in the paradigmatic examples that contemporary bioethics invokes in the supposed service of correcting those abuses. This is a subtle, challenging book.”
—Robert A. Burt, Alexander M. Bickel Professor of Law, Yale University

“Karla FC Holloway has written an important book that challenges the objectification of patients’ stories that is so common in the practice of bioethics. She persuasively argues for a cultural ethics, an ethics which gives constitutive weight to the cultural context of those stories, especially the cultural contexts of race and gender identity. Using this approach, she presents crucial new insights into issues of reproduction, clinical trials, genomics and death and dying. Her discussion of the events at Memorial Medical Center after Katrina will become a classic in the field. But most importantly, she shows us that the practice of bioethics must change if it is to successfully relate to the issues raised by the thick narratives of reality.”
—Baruch A. Brody, Baylor College of Medicine

About The Author

Karla FC Holloway is James B. Duke Professor of English at Duke University, where she also holds appointments in the Law School, Women’s Studies, and African & African American Studies, and is an affiliated faculty with the Institute on Care at the End of Life and the Trent Center for Bioethics, Humanities & History of Medicine. She serves on the Greenwall Foundation’s Advisory Board in Bioethics, was recently elected to the Hastings Center Fellows Association, and is the author of many books, including Bookmarks: Reading in Black and White; Passed On: African-American Mourning Stories, also published by Duke University Press; and Codes of Conduct: Race, Ethics, and the Color of Our Character.

The Black Body as Intellectual Property: The Case of Henrietta Lacks

In 1951, white doctors took a poor black woman’s cervical cells without her knowledge and used them to revolutionize DNA research. Private groups have made millions since. Her family, on the other hand, didn’t make out so well.

Henrietta Lacks and Her Cancer Cells
by Amy Alexander

What are we to do with the waves of pain, humiliation and outrage that flood from the pages of The Immortal Life of Henrietta Lacks?

Not that I blame the author for the high emotions this story elicits. Rebecca Skloot did her job, and she did it expertly. As was the case with Harriet A. Washington’s award-winning Medical Apartheid (2007), Skloot connects the tributaries of scientific exploitation, identifies the patterns of medical abuse and calls them for what they are: a slow, inexorable tide of institutionally sanctioned injustice that has swamped generations of black Americans.

While the general terrain covered by Skloot has already been charted (by Washington and other journalists), the signal accomplishment of The Immortal Life is its excavation of hospital and medical records on Henrietta Lacks and its exhaustive interviews with her surviving family members. Skloot braids that compelling stream into a fluid accounting of the nascent history of cell research in America, creating in the end a riveting narrative that is wholly original.

In short, we learn the stunning news that in 1951, Henrietta Lacks, a poor, undereducated 31-year-old black woman from a small Virginia outpost, unwittingly “donated” cancerous cells that eventually spawned a molecular cottage industry—and aided hundreds of breakthroughs in scientific research on cancer and other diseases.

The dime-sized slices of Lacks’ doomed cervix were taken, without her consent, by a doctor assigned to treat her. Over the ensuing decades, those core cells replicated, “like crabgrass,” according to George Gey, a prominent Johns Hopkins geneticist quoted by Skloot in the book.

To the gleeful amazement of Gey—who first discovered the replicating, hearty properties of poor Henrietta Lacks’ cells—those bits of tissue became the molecular Rosetta stone that would revolutionize DNA research. Since then, they have seeded numerous biotech companies. And during the past half-century, some of these for-profit outfits have made millions of dollars by marketing the “HeLa” cells born from Henrietta Lacks’ body.

Meanwhile, Lacks’ heirs, like many workaday African Americans who came of age at the tail end of Jim Crow, blew through the window of economic prosperity that opened between World War II and the end of the civil rights era, only to find it slammed shut in the Reagan era. The surviving Lackses have struggled to find jobs, get good educations, stay out of jail and—fundamentally—keep their heads above water.

Read the Full Essay @ The Root