Background: Henrietta Lacks was a woman whose cancer cells were the source of the HeLa cell line, the first immortalized cell line and one of the most important cell lines in medical research.  Lacks was the unknowing source of these cells from a tumor biopsied during treatment for cervical cancer at Johns Hopkins Hospital in 1951. These cells were then cultured by George Otto Gey who created the cell line known as HeLa, which is still used for medical research. No consent was obtained to culture her cells, nor were she or her family compensated for their extraction or use.

Today’s clinical trials require patients to sign informed consent forms as Dr. Simon mentions and showed in lecture. Informed consents allow hospitals to use patient data/materials for internal research use if the patient elects to do so.  What if Henrietta lacks was in a clinical trial and checked “No” on her informed consent to not allow Johns Hopkins to use her samples for research use? Her samples created one of the most valuable cell lines ever created, and has helped advance medical research as we know it. Should patients have the option to  elect “No”  for research use or is that doing a disservice to the larger scientific community trying to find cures?

I believe that patients should have right to choose what can and cannot be done with their data/samples. I personally think it should be explained to the patient the benefits of providing their data/samples for research use, but that its ultimately up to them if they don’t want to provide it for research use. I also believe the Lacks family should have received some type of royalty or compensation for the commercialization of the HeLa cells.