Friday, 14 December 2018

The immortal life of Henrietta Lacks by Rebecca Skloot

This book was recommended highly by one of our members. That was a good start for the discussion.

This text concerns the true story of how cancer cells belonging to Henrietta Lacks, an African American woman, are still alive and are greatly responsible for amazing scientific breakthroughs in America and elsewhere for almost 70 years.

Henrietta died of cervical cancer in 1951 and Rebecca Skloot is a young American, who became fascinated by this story and so it is also her journey into the background of this remarkable episode in American medical work and her tenacity in tracing and interviewing Henrietta’s family.  Skloot was trying to bring attention to her for recognition of her service to science for future generations. Henrietta’s cells, known as HeLa were obtained by a researcher, who was successful in keeping them alive and in reproducing them. The researcher found them unique in their ability to be cultured. The family who were and are still very poor, received nothing for their mother’s (and grandmother’s) ‘donation’. Henrietta did not know about the future use of these cells nor did the family consent to their use after her death.  So there are many questions of moral rights as well as recognition and respect.

The book relates not only to the scientific aspects of the research done by George Gey and many others as well as the social /societal effects of poverty upon Henrietta’s family and community. Until very recently they had not received any recognition of the use of her cells for scientific research or their worth. The family have had very different reactions to the writing of Henrietta’s life but all seemed impressed by Skloot’s devotion to the subject.


Our general comments included:

  • Amazing, shocking stuff, fascinating, sad, gruelling.
  • The HeLa cells were mentioned in the professional training of two of our members but only briefly. They were well known by medical students until recently but with no attribution or recognition of Henrietta’s role.
  • Our resident medico couldn’t help remembering some horror stories from her medical training especially in relation to the treatment of Black people in America.
  • Should be compulsory reading for a great range of students.
  • Really well done.
  • Loved the mixture of science and discussion of ethics. Great juxtaposition.
  • Very impressed by Skloot’s personal skills dealing with the family and her skilful narrative.
The conversation largely related to two factors : the personalities involved and the medical ethics or lack of them. 


Important people and the HeLa cells:

George Gey, researcher, who worked at John Hopkins Hospital, and who initiated the research in 1951 and gave her cells away for free to any interested laboratory (without receiving any extra compensation).

Deborah Lacks, one of Henrietta’s five children. She was an uneducated but very intelligent woman with a warm heart who just wanted to know about her mother and was continually trying to understand all the things that Rebecca and others were telling her.  Rebecca had great difficulties in convincing Deborah to talk to her initially but once she did Deborah became the main person in learning about the cells and in persuading the family to be resigned to their story being told.

Elsie, Deborah’s sister. She suffered terrible abuse as a teenager by a mental institution and Rebecca was able to obtain a little extra information about her for her siblings. 

Scientists who apologised to Deborah and her brothers for the way the medical profession had treated them. This included Susan Hsu who was director of medical genetics at the American Red Cross. Also Christoph Lengauer, a young researcher from John Hopkins who showed 2 members of the family some of Henrietta’s cells and actually explained for the first time that Henrietta’s cells are not alive just her cancer cells. He also explained that a person’s colour does not show up in these cells. (see pages 263-267). Susan Hsu said :


‘I feel very bad…people should have told them. You know, we never thought at the time they did not understand’. (Page 189)  

HeLa cells. This indestructible human material that once they left Henrietta’s body did not belong to her and she did not know they would be of interest to mankind!

Zakariyya, the brother who suffered so badly from his stepmother’s abusive treatment was given space to appear as a concerned person who wanted to know about his mother.

(We were very impressed by Skloot’s ability to relate to the family and allow them room to speak and wrestle with the questions she was raising.)

Rebecca Skloot herself, the author and medical scholar who at times describes her trials and tribulations. She was drawn into the family gradually over a long period and also felt their trauma. She began researching for the book in 1990 and it was published in 2009 and a movie was made staring Oprah Winfrey.

Ethics:

It was not unusual for patients in the 1950s to not be informed about cells when biopsies were taken. The issue of cells taken from one’s body is still current. One member related that she gave permission for her cells to be used just recently. The Nuremberg Code is very important with this issue. Although this code was written just after WW2,  it has not been adopted as law in any country but it underpins many of our modern medical regulations.

One member feels some sympathy for doctors trying to research medical issues like cancer. They need to experiment on patients but now it is largely prohibited. This wasn’t the case 60-70 years ago when Henrietta Lacks was alive.

Further Information about cervical cancer from Wikipedia:

Henrietta’s family see the HeLa cells through the prism of religion and science and we were asked how we respond to this. Deborah in particular kept thinking that her mother had been cloned. This is highly emotive language and sad that the family so misunderstand the science or are so mislead by the lack of information that they can assume such a terrible conclusion. It is very sobering thought in this day and age.

The question of race was obvious all through the text. Henrietta’s family thought that the white scientists were making lots of money through Henrietta’s cells and they naturally felt that they should have inherited some of the money obtained. They are still a family who can’t afford medical insurance in the very over-priced American medical system.

We briefly discussed commercialism of scientific research and patenting of such things as the human genome.

We also discussed the non-judgemental attitude of Rebecca Skloot in that she does not criticize the scientists who researched Henrietta’s cells. ‘It is what it is!’

Skloot has set up a foundation to assist Henrietta’s family and others who donate to science without receiving any gratitude or gratuity.

Present: 9 members 

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