Yesterday marked the 59th anniversary of Henrietta Lacks’ death. This past Saturday, October 2, the Johns Hopkins Institute for Clinical and Translational Research sponsored the First Annual Henrietta Lacks Memorial Lecture, which featured Rebecca Skloot as the speaker, and members of the Lacks family as honored guests. Writer and JHU nursing student Meg Adams offers some insightful observations about the event in this blog post:
More than anything else, the story of the Lacks family and their drawn-out ordeal is illustrative of the necessity for better communication between the general public and the scientific community. There is a huge need for “science translators,” advocates to bridge the gap between research, and everyone else—the public that research is intended to benefit. In Baltimore, white researchers need to be taught why their patients are wary and mistrustful of them. “I have been having patients refuse to be in studies for years, because they thought we would inject them with AIDS,” one researcher said. “I thought it was this crazy conspiracy theory thing. Now, [after reading Skloot’s book], I understand [why there is mistrust].” …
As part of this morning’s lecture, Mr. James Potter gave a presentation on the human cell. His projected slides zoomed in on the human body, magnitude by magnitude, until we could see the tiny building blocks we are made of, cells. Walking out of the lecture hours later, though, I couldn’t help but think that the most important lesson that day was not to zoom in, but to zoom out. Sixty years ago, Hopkins failed to sit down and explain the HeLa cells, or their significance, to the Lacks family. But what Rebecca Skloot did with her book was equally important: she sat the scientific community down and had them zoom out, magnitude by magnitude, until the microscopic HeLa cells that have made up so many scientists’ worlds for so long were shown for what they really were—a person, Mrs. Henrietta Lacks.
It is clear that wider exploration of the story of Henrietta Lacks and her family has led to a great deal 0f reflection and soul-searching at Johns Hopkins — the kind of reflection that would be beneficial for more of us to engage in. In two recent pieces, key thinkers at Johns Hopkins discuss the lessons of HeLa and the Lacks Family’s ordeal:
- “Immortal Cells, Moral Issues” was an Op-Ed piece published in the Baltimore Sun in February 2010 by Ruth Faden, director of Johns Hopkins’ bioethics center.
- “Immortal Cells, Enduring Issues”, an extensive reflection on the HeLa history, appeared in the Summer 2010 issue of Johns Hopkins Magazine.
For some additional context on the history of Johns Hopkins’ relationship with the Baltimore community, see Chapter 21 (“Night Doctors”) in The Immortal Life of Henrietta Lacks. If you were on the faculty or administration of JHU, how would you want the institution to address this chapter in its history? Does that have any implications for your work and research at your own institution?