Medical attitudes: are things different now?

As a biochemistry student many of the experiments I studied started with a culture of HeLa cells. Why HeLa, I wondered – was it Greek?

Some years afterwards, I read that the cell line came from a patient called Helen Lane. But it turns out that wasn’t her name. The Immortal Life of Henrietta Lacks is a fascinating portrait of a woman and her time and place, a scientific investigation, and a moral tale.

Henrietta Lacks was born in Virginia, the great-granddaughter of slaves on a tobacco plantation. Her education was cut short when she became pregnant by her cousin at the age of 14. In 1951, aged 31, with five children and syphilis, she felt a “knot” in her stomach. She went to Johns Hopkins, the only good hospital in Baltimore open to black patients. She had cervical cancer.

A tissue sample was taken before she started radium treatment. But the cells proved uniquely aggressive, both in vivo and in vitro. Even before Henrietta died nine months later, overwhelmed by metastatic cancer, the immortal cell line which bears her name was being used in labs around the world. HeLa cultures made it possible to test Salk vaccine and within a year to launch mass immunisation against polio.

Her family knew nothing of this until 1973. When they found out about the cells, they thought that in some way she was still alive. They struggled to make sense of it. The barrier between the family and the scientific community was great, the distrust deep. It took the author of the book, an educated white woman, years to gain their trust, and to help them try to come to terms with what seemed to them yet another exploitation.

They had good reason to be suspicious. In 1932 the US Public Health Service had enrolled poor black sharecroppers from Tuskegee, Alabama in a research study, in exchange for free medical care and food. The study was the natural history of untreated syphilis.  Participants were not told that, and even after the discovery of penicillin they weren’t offered treatment. By the time someone blew the whistle in 1972, many had tertiary syphilis, wives had been infected and children born with hereditary syphilis, all preventable since 1947. No surprise that many black US citizens still distrust medical research and are leery of preventive medicine.

Are things different now? The Nuremberg code, drawn up in 1947 to prevent anyone using fellow human beings for experiments the way the Nazis had, didn’t stop Tuskegee. And how much research is exported to poor countries where ethical codes are looser?

Henrietta’s treatment was standard for 1951. Then, doctors did what doctors wanted to do and patients didn’t question. As late as 1973 a postdoctoral research fellow was instructed to phone Henrietta’s widower David to ask permission to take blood samples from Henrietta’s relatives. The researcher – recently arrived from China – explained in poor English that they wanted to look for genetic markers. David spoke equally non-standard English. She thought he understood. He said yes because that was what you did when a doctor asked you something. The family thought they were being tested to see if they had cancer, and they waited anxiously for results which never came. The genetic marker study was published, with the family’s names, but no-one thought of contacting them.

Are things different now? We know informed consent is important, but how well do we check that our patients really have understood us, and we them?

Henrietta’s daughter Deborah never ceased to be troubled by the thought that her mother was still suffering somehow when her cells were blasted into space, or irradiated, or injected into prisoners, or fused with non-human cells –  to Deborah ‘cloning’ meant making replicas of her mother.

Henrietta lived in a society where racial segregation was legal. Education, health services and prospects were limited and criminality, violence and sexual exploitation were common for those on the wrong side of the colour bar.

Are things different now? Henrietta’s descendants have received no financial benefit from HeLa (and indeed cannot afford health insurance), but they are inching their way out of deprivation. And HeLa may have played a part. Traditional gospel ‘soul cleansing’ helped Deborah bear the burden of her mother’s perceived suffering, but she realised that to understand HeLa, she needed some education. And through education Henrietta’s family have come to feel proud of what HeLa has made possible – including treating the disease from which Henrietta died. Henrietta’s great-granddaughter is the first Lacks to go to university.

Still, Henrietta’s family remain distressed that the cells were taken and used without her knowledge.

Are things different now? It is not just in the Deep South of the 1950s that there is a gap between professionals and the public on medical ethics. Doctors at Alder Hey didn’t feel that it was necessary to ask permission to remove organs at post-mortem, or even live organs if they were considered to have no value to the owner. (The thymus glands of children undergoing heart surgery were removed and sold to a pharmaceutical company.) When these practices came to light in 1999, it was clear the public felt very differently, and the result was the Human Tissue Act of 2004 and the creation of the Human Tissue Authority. Consent is now required for the removal of human tissues and their use is legally controlled. But the removal of Henrietta’s cells would still be legal in the USA, and in the UK samples taken for biopsy can subsequently be stored without further consent. Maybe, in 50 years time, we will look askance at the cavalier way we now treat the ownership of patients’ cells.

The Immortal Life of Henrietta Lacks, Rebecca Skloot, Macmillan (2010) ISBN-10: 9780230748699

P.S. In 1972, when HeLa came to the notice of the general public, Henrietta’s name was not revealed. Who was HeLa? The popular press speculated. The film star, Hedy Lamarr, perhaps? They settled on ‘Helen Lane’.

Judith Harvey

Judith Harvey was a research scientist, ran the VSO programme in Papua New Guinea and taught in a Liverpool comprehensive school before going to medical school. She has been a partner, a salaried GP and a locum, an LMC chair and a long-time supporter NASGP. Her charity, Cuba Medical Link, enables medical students to go to Cuba for their electives.

1 Response

  1. Judith Harvey
    2013 Henrietta Lacks' genome has now been sequenced, without consultation with her family. For more information see David Kroll's article on Forbes.com: http://www.forbes.com/sites/davidkroll/2013/03/24/the-henrietta-lacks-genome-consent-trust-and-common-decency/

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