- The Immortal Life of Henrietta Lacks, Feminist Themes, and Research Ethics
In 1951 Henrietta Lacks felt a lump in her cervix, entered Johns Hopkins Hospital, and was examined in a colored-only exam room by a physician who biopsied the lump. Called back to Hopkins for treatment of diagnosed carcinoma of the cervix, Henrietta signed a one-line “Operation Permit,” and under general anesthesia received her first round of radium treatment. Before sewing a tube of radium into her cervix, the surgeon on duty took samples of tumor and healthy tissue, and as with many other samples taken from charity patients at Hopkins, handed the samples to researchers trying to develop an immortal human cell line (an important research tool, an immortal cell line is a population of cells from a multicellular organism that, due to mutations, do not lose their ability to divide at the point most cells do). Henrietta’s tumor cells thrived in culture, doubling every twenty-four hours. They didn’t die. They [End Page 159] became HeLa, the first immortal human cell line. Henrietta died about eight months after seeking treatment.
So much has been written about Rebecca Skloot’s The Immortal Life of Henrietta Lacks that it is difficult to offer fresh insight on this “science book” that has had a remarkable run on the New York Times best-seller lists. Yet it is worth examining how Skloot’s telling of Henrietta’s story illustrates, and provides an excellent opportunity to teach, feminist approaches in bioethics. This is especially true since research ethics is an arena in which feminist insights have played a less explicit role than in other bioethical domains.
Accounting for some of the book’s popularity is the degree to which Skloot’s telling is explicitly personal. It is not just that an authorial voice is present throughout, but that Skloot shares and reflects on her interests, fears, and ethical quandaries. Situation and particularity matter. Someone who had not been haunted by the “black woman” behind the HeLa cell line since hearing the name “Henrietta Lacks” in community college biology class would have written a very different book. Someone differently situated from this young white woman from the North, who had an interest in genetics, a graduate degree in writing, and both sensitivity and gumption, would have approached Henrietta’s living relatives very differently. They, in turn, would have perceived and received the writer differently. Someone with more money and books behind her would have begun with a publicist, not a grassroots book tour worthy of studies in social networking and the importance of relationships (Skloot 2010).
In giving public voice to Henrietta’s children, as well as posthumously to their mother, Skloot demonstrates tensions and tenets of feminist narrative approaches and contemporary standpoint theories. She shares with her readers her discomfort in presuming to speak for those who have every reason to mistrust her use of their words, dialect, and experience. Her respect for Henrietta’s family members, who were her informants and who in some cases became her friends, is evident. The research-ethics debate about whether those enrolled in research are properly termed “subjects” or “participants” may be illuminated by considering whether Henrietta’s family are properly termed the subjects of Skloot’s book, participants in her project, or even her collaborators.
Not wanting to be yet another party that exploited Henrietta’s story and family, Skloot created a foundation to benefit the family members’ health and education. Thinking of debates about appropriate compensation for research participation and what is owed to communities in which research is conducted, the foundation might be considered within the “fair benefits framework”; the [End Page 160] foundation’s creation certainly has parallels to a “capacity-building” approach. With regard to debate about individual and community interests, in reading Skloot’s book we recognize that even if only some of Henrietta’s relatives agreed to talk with the author, the publicity of Henrietta’s story had the potential to affect all of them, including the black and white Lackses who are kin.
Disenfranchised and oppressed...