Tiffany Jenkins: Race for science in Henrietta’s story

Henrietta Lacks in the 1940s. Picture: AP

In 1951 Henrietta Lacks, a poor black woman, was admitted to hospital with a pain in her abdomen. A biopsy revealed cervical cancer. She died shortly after, in the segregated ward of the John Hopkins Hospital in Baltimore, aged just 31, leaving behind a husband and five children.

Henrietta Lacks would never know that the cancer cells that brought her life to an end would have a revolutionary impact on the understanding of the disease. But the story of how they did so is not straightforward. It is one that raises questions about the ethics of medical science and patients’ rights, in the past and in the present. And it is a story that has, unfortunately, become tangled up in the politics of race.

What happened is the subject of HeLa, a production that is part of the Made in Scotland showcase at the Fringe, appropriately staged in an anatomy lecture theatre by Iron-Oxide. Adura Onashile plays Henrietta, members of her family and a nurse, as well as taking the audience through the scientific breakthroughs.

It all began when Henrietta Lacks was undergoing treatment in hospital. The doctors took two tissue samples – one healthy and one from the tumour – and passed them on to George Gey, a scientist who had been trying to grow human cancer cells for 30 years, to research curing malignancies, but the cells had always quickly died. Henrietta’s tumoural cells did not. Instead, they kept replicating, which made them invaluable to anyone who wanted a stable base for experiments. Named after the two initials of her first (He) and last (La) name, the cells grew, becoming ubiquitous in laboratories around the world, and were used in more than 74,000 studies.

The HeLa cell line has since been invaluable in developing treatments for leukaemia, haemophilia and Parkinson’s. It has been used to study everything from appendicitis to human longevity. Its cells have been sent into orbit to see the effect of space travel on humans, and have been exposed to nuclear testing and toxins. The cells have furthered our understanding of cancer and AIDS. They are still used to grow viruses and to test anti-tumour medicines.

The problem, apparently, begins with the question of consent. “They never asked her”, Onashile tells us. Nor did the doctor who took Henrietta’s cells from the tumour before she died ask, or tell, her family. This was a racist act, it is implied in the play, at the same time unfairly eliding it with the Tuskegee syphilis project, during which patients were not treated in order to follow the disease. But this is to do the medical profession a disservice. Taking tissue from living patients without their knowledge was common practice at the time. Gey also took cell samples from himself and his children. And it should be common practice, even if now we should know about it, partly because it helps us understand what benefits it can bring. Taking them causes no harm and could help find a cure for the cancer from which Henrietta Lacks died.

The treatment of the Lacks family is more complicated. It was only in 1973, when a scientist called to ask for blood samples to study the genes her children had inherited, that the family learned how their mother’s cells had been used. Family members were bewildered and tried to find out more, with difficulty. Some thought they deserved some of the profit companies were earning from research on the cells. There is no doubt the news was a shock to the family and that no one had explained what was happening and why: there are real failures here. But perhaps it should be the case that the family does not benefit financially from the HeLa cells. We should not tie the donation of human tissue to payment. It should be a gift, one that goes both ways.

The controversy over the HeLa cells tends to equate medical breakthroughs, conducted mostly by white men – whose names are written up on the blackboard in the anatomy theatre – with the racially divided America of the 1950s. There was institutional racial inequality then, but this was not reflected in this case. Where there were and are injustices it’s not due to medical science, as is portrayed, but structural inequalities in society. That the Lacks family to this day are poor and have no health insurance is awful, and ironic given that their cell lines have benefited millions. But it is because they live in a country where there is no universal healthcare, where people – black and white – are not medically treated unless they are insured because they cannot pay for it. That is where the blame lies. Similarly, HeLa cells were used to develop the polio vaccine, which is now largely eradicated, though it still exists where they do not vaccinate, in a few countries in Africa and Asia. That people still suffer from polio when there could be a vaccine is the problem.

One pertinent question is that of privacy. Given that it is now common knowledge where the cells came from, it is a breach of privacy when researchers, as they have done, publish the genetic information of the Lacks family. There have been steps to address this, but they are questionable. Instead of protecting the identity of the family, scientists have begun to give them influence over the direction of some of the research. The National Institutes of Health have just agreed that two members of the Lacks family will sit on a committee to approve research on NIH-financed research on the genome of HeLa cells. This is a small but dubious step that sets the questionable precedent of allowing families to influence research.

The controversy looks set to fester long after the Festival, with developments in genetic research and Opera Winfrey and HBO making a movie of Lack’s life story. The dominant narrative is of a poor black woman who was exploited by science, when it is in fact a story of how dedicated researchers helped to save millions of lives in an unequal society. It’s a narrative that does Henrietta Lacks a disservice by focusing on her tumour cells and not on the person: she was always more than tissue. She was a mother, a wife and a woman who loved to dance. That is how she should be remembered.