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Editor’s Note: Ethics and Genetics
June 2, 2010  |  by Catherine Pierre

When associate editor Dale Keiger set out to write about Rebecca Skloot’s New York Times best seller, The Immortal Life of Henrietta Lacks, he got a few quizzical looks. After all, the book—which tells the story of Lacks’ treatment for cervical cancer at Johns Hopkins Hospital and how the so-called HeLa cells taken from her then continue to support medical research, advancing science and, in some cases, reaping huge profits for the companies that have used them—paints a rather unflattering portrait of the institution. How could we write about that?

I figured, how could we not? After all, the story is out there—often in headlines like “Health-Care Injustice” (Newsweek) and “Henrietta Lacks’ Cells Were Priceless, But Her Family Can’t Afford a Hospital” (The Observer). Our readers would likely appreciate an honest and deep discussion of some of the issues involved in Lacks’ experience and the aftermath. Dale’s story (“Immortal Cells, Enduring Issues”) picks up where Skloot’s leaves off: Situations like Lacks’ prompted a hard look at issues such as privacy and informed consent, and hospitals have since adopted policies and procedures to protect patients. But the more medical technology advances, the more vexing such issues become.

Interestingly, the late Johns Hopkins physician and researcher Victor McKusick, Med ’46, who worked with Lacks’ descendants in his search for DNA markers that could identify HeLa cells in lab samples, appears not just in this story but in senior writer Michael Anft’s cover story about Hopkins pediatrician Richard Kelley, who specializes in treating rare genetic diseases that occur in Amish and Mennonite children (“The Disease Chaser”). McKusick worked with these populations in the 1960s, studying the effects of their genes and identifying a number of conditions specific to them. Decades later, Kelley diagnoses and treats those and other genetic diseases. But his research has raised its own controversy. Because his group of patients is so specific and small, clinical trials aren’t feasible. He treats his patients based on observation and instinct—and he’s been criticized for that.

It seems genetic research will never be without its complexities, both scientific and ethical. But it’s crucial that the Kelleys and the McKusicks of the world continue to ask scientific questions—and raise ethical ones while they’re at it. It’s also crucial that the rest of us—university magazines included—ask questions of our own and contribute to that discussion.


1 Comment


  1. It saddens me this happened but I’m grateful Henrietta’s was in our mist for a short-while and her cells continue to live on and help with discovery/cure of harmful diseases. I’m glad the University recognizes their folly and they are now guidelines for consent to protect patients/clients. The big questions are. What happens now with Henrietta’s family? How come they are not compensated for their mother’s cells used in medical research, the manufacture of vaccines and breakthrough treatment in science? Meanwhile drug companies are getting richer with the aid of HeLa cells.

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