Title: Miss
University: Auburn University
Email: nehapatel0393@gmail.com
Twitter: N/A
Website: N/A
Description of Work:
I am a technical communicator who specializes in user-centered approaches to communicate complex Science, Technology, Engineering, and Mathematic (STEM) information to various audiences. My communication skill set includes editing, writing, and document designing as an independent worker or as part of a team in deadline-driven environments. My undergraduate studies at the University of Alabama at Birmingham (UAB) were split into two supposedly polar opposite disciplines: Biology and English. The glue between these two disciplines for me has been RHM due to the value it adds to my work as a technical communicator. I am always curious about how language is used to discuss health and medicine to various audiences because this type of awareness can be valuable to technical communicators.
Symposium Submission:
“The Sequel”: HeLa Cells, Public Genomic Data, and the Foucauldian Duality of Object/Subject
With the publication of Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, in 2010, the true story of the title character’s HeLa cells—cancer cells taken from her body during treatment without her knowledge or consent—became internationally known. Her case serves as a reminder of the need for consent guidelines and federal regulations to protect the rights of patients and their human tissue. The book also tells the story of Lacks’ family: how they were unaware for many years about the cell line—including its global applications in research and its economic and social impact—until scientists approached them two decades later to ask for blood samples. Even then, the researchers did not adequately explain the impact of HeLa cells or provide the family an opportunity for informed consent. Many scientists knew this story before the publication of Skloot’s book, but after its release, few could claim that they did not know of the cells’ origins or the Lacks family’s plight.
We review this history to establish the context for a more recent occurrence involving HeLa cells and the Lacks family, which is the focus of our presentation. In 2013, just three years after the book’s initial publication, the family was once again in the spotlight and once again, their identities were exposed without their consent. On March 11, 2013, researchers from the European Molecular Biology Laboratory (EMBL) published a paper that presented “a detailed genomic and transcriptomic characterization of a HeLa cell line.” In short, the paper announced the decoding of the HeLa’s entire genomic sequence. And, the researchers (as well as the journal editors and reviewers) published genetic information about HeLa cells without even contacting the Lacks family.
Although parts of the HeLa genome have been published over the decades, EMBL’s publication allowed full access to the entire genomic sequence of HeLa. With the full genomic sequence, the Lacks family’s own genetic privacy was infringed because of their familial link to Henrietta Lacks (though some scientists argue that the cancerous cell line has mutated innumerable times since the original cells were extracted, rendering most genetic linkages suspect). This new HeLa scandal gained notoriety when Skloot wrote an editorial in the New York Times, decrying what she called the “sequel” to the family’s previously infringed rights. The EMBL team then restricted access to the genomic sequence until the situation could be resolved. Eventually, Francis Collins (the current Director of the National Institutes of Health and the former head of the governmental Human Genome Project) stepped in and brokered a deal between the researchers and the Lacks family that restricted access to the genomic data, making it available on a case-by-case basis and with the family’s approval.
After the agreement was reached, Collins was quick to emphasize that the HeLa case was exceptional and should not be viewed as precedent for other cases of genomic sequence publication. In his view, the HeLa case is an aberration because of the cells’ history and the obvious abuse of patient and family rights. Regardless, the controversy prompted the Department of Health and Human Services (HHS), which oversees Institutional Review Boards and determines guidelines for human subjects research, to review its policies on de-identified human tissue samples and their resulting data. Patient advocates argued that if tissues and/or data could be traced to their origins, the privacy of other research subjects might be infringed. In the end, the HHS chose to merely slightly modify their policy, urging researchers to seek informed consent from subjects only if a patient’s identity could be potentially revealed.
Our presentation will explain the science, ethics, and rhetoric surrounding the publication of the HeLa genome through the lens of embodiment theory. First, we will discuss Foucault’s medical gaze, exploring the ways in which scientists’ perception of human tissue—as a laboratory object rather than as an extension of the patient-subject—resulted in the publication of the HeLa genome without the family’s consent. Many see her case as settled law because the cells are so pervasive that they have become ubiquitous laboratory tools. In addition, many argue that this precedent, if applied elsewhere, would stymie genetics research by extending consent to all family members, rendering the consent process impossible. Second, we will discuss the ways in which legal terminology apply the object/subject (and body/patient) duality in a practical setting: recent human subjects lawsuits have parsed a legal distinction between tissue donors, who presumably waive their rights to consent and ownership when they donate, and research subjects, who retain the rights afforded by all human subject participants.
Finally, we will discuss the ways in which these linguistic and epistemic dualities constitute a new form of genetic determinism. Generally, this term implies the ways in which patients’ genetics determine the value or health of their bodies, a determinism from the inside of bodies that leads to exterior medical and social perceptions of those bodies. Now, this determinism can come from the outside in: exterior medical and social perceptions of tissues and genetic data (as extensions of the body) determine the status of the interior of the body—the ability of donors, patients, and research subjects to own their bodies and information about them.
References
Callaway, E. (2013). Deal done over HeLa cell line. Nature, 500, p. 132-133.
European Molecular Biology Laboratory. [Landry, J., P.T., Rausch, T., Zichner, T., Tekkedil, M.M., Stütz, A.M., Jauch, A., Aiyar, R.S., Pau, G., Delhomme,N., Gagneur, J., Korbel, J.O., Huber, W. & Steinmetz, L.M.] (2013, August 1). The genomic and transcriptomic landscape of a HeLa cell line G3: Genes, Genomes and Genetics, 3, 1213-1224. doi: 10.1534/g3.113.005777
Foucault, M. (1973). The birth of the clinic. New York: Pantheon Books.
Javitt, G. (2010). Why not take all of me? Reflections on the immortal life of Henrietta Lacks and the status of participants in research using human specimens. Minnesota Journal of Law, Science & Technology, 11, p. 713-755.
Regalado, A. (2013, March 27). The dawn of genome trolling. MIT Research Review. Retrieved from https://www.technologyreview.com/s/512966/the-dawn-of-genome-trolling/
Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Random House.
—. (2013, March 23). “The immortal life of Henrietta Lacks, the sequel.” The New York Times. Retrieved from: http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html.