Like many oncologists, I am picky about the books I read. I’m not ashamed to say that I favor funny, happy books that make me laugh. There’s enough drama and angst in my day job that I tend to avoid this during my free time.
So it was with a tinge of annoyance when a friend thrust “The Immortal Life of Henrietta Lacks” by Rebecca Skloot into my hands, saying, “You must read this.” Like most of us, I had a superficial knowledge of Henrietta Lacks, a poor black woman who before her death from cervical cancer, provided HeLa cells, the first immortal human cancer cell line. These cells have contributed to countless breakthroughs in medicine, including the development of the polio vaccine, advances in cancer and infectious disease research, and discovery of principles that have led to cloning and in vitro fertilization.
But as I read this book, I found that I could not put it down. I was drawn by how the story of Henrietta Lacks is the prime example of why research ethics and disparities in care should remain prominent in the field of oncology. Before Mrs. Lack’s death in 1951, her doctors took a sample of cancer cells from her cervix without her knowledge and this led to the development of the first immortal human cancer cell line. The contribution to medical research that HeLa cells have made is unmistakable. But this all started without her consent. This pattern continued onto her family when researchers later drew blood on her children to further HeLa research without their understanding of why they were being tested. They believed that doctors were screening them for the cancer that killed their mother.
As an oncologist and a clinical researcher, I have often found the process of consenting patients, especially for samples and blood draws, to be a hindrance. Using the Henrietta Lacks example, where would the field of medicine be if she had declined to donate her cells for research?
However, the repercussions of her doctors' failure to obtain informed consent from Mrs. Lacks and later, her children, are significant. This experience is further illustration to the African American community that the medical establishment has a history of exploiting blacks and leads to further mistrust of the scientific community. This damage, along with the Tuskegee syphilis study and others, has to be weighed against all the good that HeLa cells have created.
Which brings us to modern-day oncology. It may be tempting to dismiss these past issues as “history” but the truth is that most of these events occurred within our lifetime. As much as a bother informed-consent processes can be, they are important because they protect our patients and they protect the medical community. Emphasis on medical ethics and disparities in care must remain prominent in medicine. Nowhere is that more true than in the field of oncology.