Historical Perspectives On Contemporary Issues

Immortal Life: The Promises and Perils of Biobanking and the Genetic Archive


A forum held at the American Philosophical Society on September 28, 2017, and continued online here.

 

Are we now approaching a time when we could all live, at least in freezers, forever? Modern collection and storage of biological samples make possible a kind of "immortality" for anyone who has ever had a saliva sample frozen for genealogical testing or a blood sample stored in medical collections. New technologies, like CRISPR for gene editing, expand possible future uses of biological materials stored around the world. The story of Henrietta Lacks, popularized in a book by Rebecca Skloot and an HBO special starring Oprah Winfrey, illustrates the ways that a single person's cells and tissues can take on lives of their own as research material. In 1953, just before her death, Lacks's cancer cells yielded the oldest and most common human cell line still used in research.

There has been significant public interest in her remarkable story, but the "immortality" of people like Henrietta Lacks raises pressing questions for all of us. Who owns and controls bodily materials extracted from research subjects and patients? Who can profit from the cells and genes that make us who we are? How do we weigh the value of personal privacy and an individual’s sense of self against the potential for medical progress? How do imbalances of wealth and power influence questions of consent, exploitation, and identity for people who provide biological materials? These questions framed a public forum organized by the Consortium and hosted by the American Philosophical Society on September 28, 2017. We invite you to watch the recording of the event, read the expert commentary, and join in on the discussion to explore this questions and more! If you are not already a registered member of our web site, please create an account here before participating in the discussion.

Questions or comments about this event or others like it? Let us know.

Featuring

Susan Lindee University of Pennsylvania

Susan Lindee is Janice and Julian Bers Professor of the History and Sociology of Science at the University of Pennsylvania and Chair of the Consortium for History of Science, Technology and Medicine. Her work explores historical and contemporary questions raised by genetics, nuclear weapons and radiation risk. Her books include Suffering Made Real, The DNA Mystique, and Moments of Truth in Genetic Medicine.

 
Projit Bihari Mukharji University of Pennsylvania

Projit Bihari Mukharji is Associate Professor of the History and Sociology of Science at the University of Pennsylvania. His books include Nationalizing the Body and Doctoring Traditions. His work focuses on issues of marginality and marginalization both within and through science. His current research is on the history of human difference and race in 20th century South Asia, and how the politics of race, indigeneity and biocolonialism have influenced history.

 
Joanna Radin Yale University

Joanna Radin is Assistant Professor of the History of Medicine at Yale University. Her 2017 book, Life on Ice: A History of New Uses for Cold Blood, explores these issues and how indigenous activism around the preservation of blood provides new ways to consider their ethical dimensions. She is interested in the history of forward-looking projects in biomedicine, ecology, and anthropology in the 20th century and the politics of preservation and re-use. Her current research is investigating the ways that science fiction has shaped ideas about the future of biomedicine.

 
Assessing the Value of DNA
Nathaniel Comfort

Department of the History of Medicine, Johns Hopkins University

Nathaniel Comfort, PhD, is Professor of History in the Department of the History of Medicine and the Director of Graduate Studies in the History of Medicine at Johns Hopkins University. You can learn more about his work here.

Reducing the self to one’s molecular remains enables human identity to be treated as a commodity, but the use value of DNA is still rather low.

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Power and the Production of Biomedical Knowledge
Yulia Egorova

Department of Anthropology, Durham University

Yulia Egorova, PhD, is a Reader in Anthropology, Director of Postgraduate Studies, and Director of the Centre for the Study of Jewish Culture, Society and Politics at Durham University. You can read more about her work here.

In many countries, research in constructing national or community-specific genomes continues to develop, which suggests that scientific practices linking biological material to national and cultural human diversity are symptomatic of wider socio-political agendas that privilege naturalist accounts of human difference.

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Scientific Perspectives
Kenneth M. Weiss

Department of Anthropology, Penn State University

Kenneth M Weiss, PhD, is the Evan Pugh Professor Emeritus of Anthropology and Genetics in the Department of Anthropology at Penn State University. Learn more about his work here.

Cell lines may be ‘immortalized’ in the sense that they can grow indefinitely in lab culture, but they will also continually accumulate changes that were not in the donor. Henrietta Lacks’ cells are not Henrietta Lacks!

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Post Your Comments and Questions

Tell us what you think
» Babak Ashrafi
» April 10, 2018

 

Insights from the Collections

The Consortium’s collections provide many opportunities to learn more about the history of research in human cellular biology, the genetic archive, and heredity. Indeed, a significant amount of the research supporting the presentations in this video was conducted using Consortium-member archives.

Our cross-institutional search tool allows researchers to investigate materials across multiple institutions from a single interface. With more than 4.4 million catalog records of rare books and manuscripts, the Consortium’s search hub offers scholars and the public the ability to identify and locate relevant materials.

Search the Consortium search hub.

Some of the materials related to this topic include:

The Baruch S. Blumberg papers, American Philosophical Society

The James V. Neel papers, American Philosophical Society

The John Rodman Paul papers, Yale University

Journal of the research vessel Alpha Helix, New York Academy of Medicine

Indian genetics and heredity periodicals, Linda Hall Library

“Linkage disequilibrium” and genetics texts, Cold Spring Harbor Laboratory and New York Academy of Medicine

“Urheimat” theory, Newberry Library

Alexis Carrel Papers on cellular immortality and organ sustainability, Rockefeller Archive Center

Theodore Malinin Collection of Alexis Carrel and Charles Lindbergh Papers, Rockefeller Archive Center

Oral histories with Pew Scholars in Biomedical Sciences, Science History Institute
 

Find out More from our Speakers

Books by Susan Lindee:

Moments of Truth in Genetic Medicine

Genetic Nature/Culture: Anthropology and Science beyond the Two-culture Divide

Suffering Made Real: American Science and the Survivors at Hiroshima

The DNA Mystique: The Gene as a Cultural Icon

 

Books by Projit Bihari Mukharji:

Doctoring Traditions: Ayurveda, Small Technologies, and Braided Sciences

Nationalizing the Body: The Medical Market, Print and Daktari Medicine

Medical Marginality in South Asia: Situating Subaltern Therapeutics

Crossing Colonial Historiographies: Histories of Colonial and Indigenous Medicines in Transnational Perspective

 

Books by Joanna Radin:

Life on Ice: A History of New Uses for Cold Blood

Cryopolitics: Froze Life in a Melting World