The Immortal Life of Henrietta Lacks by Rebecca Skloot is a book that raises a range of issues including data and sample gathering from human subjects for research.
Henrietta Lacks was an African-American woman who died in 1951 after being diagnosed and treated for cancer at Johns Hopkins Hospital in Baltimore. When author Skloot became aware of Lacks’ story she started tracking records, interviewing medical personnel, researchers as well as Lacks’ surviving family members. The resulting book was selected for the University of Colorado Denver I Anschutz Medical Campus’ Common Community R.E.A.D.
More than 50 faculty, staff and students joined in today to discuss their impressions of the book. Most had participated in smaller discussion sessions held at both campuses during the past weeks. The overall program concluded with today’s panel discussion in Ed2 North. Panelists were:
— Shawna McMahon, PhD; LabCoats coordinator who facilitated many of the discussion groups
— Lynn Mason, PhD; director, Student Services
— Randall Cohrs, PhD; professor, Neurology
— Tate Van Winkle, prospective medical student
— Marty Otanez, PhD; assistant professor, Anthropology
“I was glad to have had an opportunity to read this book,” said Mason, “especially from the perspective of informed consent. It really highlighted the tangled web when bits and pieces of a person are taken — raising the question of ownership.”
The book traces the trail of HeLa cells –as they are know to scientists– which originated from Henrietta Lacks and remain a source of material for research.
A microbiologist, Cohrs shared that he has cultured cells for virus research since 1974 using HeLa, but like many other researchers he was not aware of their source 40 years ago.
From an anthropology perspective, Otanez noted that the book made him think about “how do we involve people in research in a human way?” He also said we need to be aware that science often separates human issues from the science.
One of today’s participants commented that in reference to the medical research community, in her opinion, not a lot has changed since the 1950s when research subjects came from individuals of low socio-economic classes.
Another participant commented that in reading the book, “I vacillated between being interested in the science and outrage at the racism demonstrated in the story as it intersects with science.”