Henrietta Lacks and the Informed Consent Debate

Suddenly, Henrietta Lacks has been making the news, making the rounds among talk shows, hip magazines, blogs. The thing is: Henrietta Lacks is dead. She died in 1951. So I wondered how is it that a woman who died 59 years ago is suddenly popular today? It's a book, of course. A new book chronicling The Immortal Life of Henrietta Lacks, her life and her “most eventful afterlife.” I'll say. I can only hope for such an eventful afterlife.

Henrietta experienced health problems for many, many years prior to her diagnosis of cancer. The poor woman was in denial, continually thinking things would get better. What on earth would make cancer symptoms stand out from various Sexually Transmitted Diseases back in a day when STD's weren't talked about? So Henrietta kept her mouth shut and suffered in silence, thinking she was a good wife.

When Mrs. Lacks finally found a doctor and was diagnosed with cervical cancer, she continued in the same fashion – denial, secrecy and optimism. Eventually she shared the news and ended up at Johns Hopkins, where an enterprising young Dr. took some extra cells from Henrietta, without her knowledge. He had been doing this to other patients in hopes of having cells survive in which he could sell to research and development, but all the cells would eventually die. In a stroke of fate Henrietta's cells wouldn't die. In fact, they reproduced at a shocking rate. And still, the good Dr. kept it all a secret from Henrietta. She struggled through her cancer treatments and cancer aggressiveness and died, probably a painful death, within the year.

In 1951, doctors were just beginning to see genetic links to diseases like Down Syndrome. Amniocentesis for genetic disease was just starting to make the scene. Henrietta's cells, now called “HeLa” were extraordinarily beneficial to all kinds of research in genetic medicine. By 1954, 3 years after Henrietta's death, her cells were now being sold for profit, not just for good old research. Henrietta's cells were being used, successfully, in many scientific
endeavors that we benefit from today. The world has medically benefited tremendously from Henrietta's cells.

In 1966, a patient was unwittingly injected with Henrietta's cells in an effort to monitor how cancer spreads. This led to medical review boards and informed consent laws.

By 1986, scientists are infecting HeLa cells with HIV to study how HIV spreads and thereby identifying a key receptor.

Today HeLa cells aren't the only ones being used. We now have MCF 7 (69 year old woman), VERO (African Green Monkey), JURKAT (14 year old boy), HEK-293 (Human Embryo), HT-29 (44 year old woman), and LNCAP (50-year old man). All being used for research that most likely will help your grandchildren fight a deadly disease.

What do you think about this? Does Henrietta's family deserve some money? Was it worth it to violate her personal rights in order to make so much progress in fighting diseases? Does the end justify the means?

Read more on this subject: Smithsonian, Virology, Johns Hopkins story,