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
