The Immortal Life of Henrietta Lacks by Rebecca Skloot:
This is such a remarkable book! From a scientific point of view, few discoveries have made a more revolutionary and valuable contribution to the overall advancement in medical research than HeLa cells. HeLa cells were important
in the research of polio, measles, TB, encephalitis, cancer, vaccines, genetic
engineering, cloning, in vitro-fertilization, chemotherapy, AIDS, and space
exploration just to name a few. On a personal level, HeLa cells are essential
for my research trying to develop a new treatment for cancer and I use them in
my lab often. However, to fully appreciate the importance of the medical advancement derived from Henrietta Lacks’ cells, one needs to understand the personal story of the woman behind the cells. At some level we can all relate to the book’s themes of love, despair, vulnerability, and the need to be heard and understood. It is this connection that helps us think beyond the scientific
potential of of HeLa cells and recognize the source of these cells as a human being much like ourselves. When the medical and personal ramifications of the HeLa cells are woven together, clear moral and ethical dilemmas arise. [vimeo]http://vimeo.com/9581140#at=0[/vimeo]
The following are some questions I would like you to think about and respond to while reading this book:
If Henrietta Lacks could know how important her cells have been to science, do you think she would approve of the fact that they were taken from her without her knowledge or consent?
Do you sympathize with the scientists and doctors in the HeLa situation or with the Lacks family? Why?
One major concern in this story is that many researchers, institutions, and companies have benefited from the HeLa cells, but the family did not receive anything in return for their “donation.” This is the norm in research (a precedent set in case law by Moore v. Regents of University of California that research subjects do not have property interests in their body parts and are not owed any compensation). Are there other ways a researcher or research institution could give back to a participant or community, other than
direct financial compensation?