Ethics should be a keystone of scientific inquiry, especially in medicine. Unfortunately, when I typed into google search bar “human experimentation”, I was immediately provided with a list of unethical human experiments conducted in the United States. While reading the list, the nature of experiments conducted was not much better than what was done by Dr. Mengele in Nazi Germany. Unethical biomedical experiments covered in that list ranged from injection of plutonium to exposure of unsuspecting servicemen and civilians to biological and chemical warfare agents. Of course, the case of Henrietta Lacks did not involve involuntary invasive medical procedure but nonetheless it shows that during that time, 1940s-1980s, ethical standards in biomedical research were easily breached especially in cases involving vulnerable populations. In one of the cases, the doctor responsible for injection of plutonium into cancer patients later became vice president of the American Cancer Society. Most of the experiments in that article involved poor, people of color or both. Such lack of appreciation for human life based on race and social status makes one doubt humanity during that time period.
Consent in biomedical research should be as essential as let’s say availability of materials needed for research. Consent should be required even for research involving one’s tissue or cells. The story of Henrietta Lacks should be known to general public and the scientific community. Her cells made her immortal. Progress achieved in biomedical research using HeLa cells changed the world. Her contribution is now recognized however the profit that was made off her cells should have been shared with her relatives. The least that could have been done to apologize for that breach of ethics was to provide monetary compensation to the family. Rebecca Skloot conducted tremendous work writing her book, including all of the background information and the suffering Henrietta’s family endured. I think that it is necessary to make people understand not just the scientific point of view but ethics and emotional aspect of it. This documentary did not just tell the story in a dry matter of fact way, it elicited a strong emotional response—it made the viewer feel the pain and frustration experienced by her children and relatives.
For a population abused by the ones in power such as doctors and scientists it is difficult to recover and forget unfairness. To the moment the documentary was made, African Americans were still cautious of Johns Hopkins Hospital, referring to the days when the doctors would supposedly abduct African Americans for biomedical research. All of that combined creates medical mistrust based on decades of unfairness. All in all, I appreciated the documentary and I think it provided a new look at that story. At the same time, it made me think of how many other African American men and women unwillingly participated in medical experiments. One can only guess.