Henrietta Lacks; image from the Henrietta Lacks Foundation
I have previously written about Henrietta Lacks and her immortal line of cancer cells so vital to cancer research, the immortal HeLa cell line. Here is a brief summary of the background: In 1951, Henrietta Lacks died of cervical cancer on 4 October 1951. Her hospital, the John Hopkins Hospital, removed two samples of her cervix without her permission or knowledge. Dr George Otto Gey discovered that the HeLa cancer cells were unique to science, in that the cell line survived and kept growing indefinitely, making them a great tool for biomedical research. The cell line was used to develop the Salk’s Polio vaccine, and has been used in numerous other medical advances. Meanwhile, Henrietta Lacks was buried without a tombstone in a family cemetery in Lackstown.
No one thought to approach the Lacks family requesting permission to use the cells. Then, in the early 1970s, 25 years after the death of Henrietta, the remaining family of Henrietta Lacks started getting calls from researchers who wanted blood samples from them to learn the family’s genetics and background. When the family questioned this, they discovered the harvesting of Henrietta’s cells. Neither Lacks nor her family gave the hospital permission to harvest the cells, but at that time, permission was not legally required. As it was, no one in the medical industry felt the need to educate the family about the immortal cell line. However, in the 1980s, private Lacks family medical records were published without asking for the family’s consent. As you might guess, they were getting quite perturbed by this highhanded behaviour by the medical establishment.
This is where ethics and morality of the biomedical industry must be questioned. In America, you do not ‘own’ your cells, and so legally the use of HeLa cell line for research is all good. However, it isn’t just the cells that are involved here. The Lacks family have had their privacy violated. I am fervently pro-science, and yet the way the Lacks family has been treated makes me very uncomfortable.
Multiphoton fluorescence image of HeLa cells with cytoskeletal microtubules (magenta) and DNA (cyan). Image by National Institutes of Health
The HeLa cell line has played a monumental part in the advancement of science. The cells are often used to test human sensitivity to chemicals, cutting back on animal testing. I am certain that Henrietta would be proud of her legacy. But the impact on her family has been downplayed. When the genome of the HeLa cell line was researched and published, again no one had asked the family’s consent, which allowed the world to see their genetic heritage online. Another shocking invasion of their privacy! This time though, the scientific community rushed to make amends with the family.
The problem is that none of the scientists have actually done anything wrong by the laws of their lands. Scientists aren’t heartless (quite the opposite, in fact), but they do tend to have tunnel vision where their research is involved. They are human, and make mistakes. That is why most universities now have ethics courses, and ethics committees, to assist researchers in making moral and ethical decisions. And this ongoing debate is also part of Henrietta Lacks’ legacy, and in the long run, it may be even more important than the HeLa cell line.
Image by Walbaum
