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 

Caroline Moorehead's Dancing to the Precipice: Lucie de la Tour du Pin and the French Revolution

Our last book of the year was Caroline Moorehead's biography of Lucie de la Tour du Pin, who has been described as the Pepys of her generation. The biography, titled Dancing to the precipice: Lucie de la Tour du Pin and the French Revolution, chronicles her life from her birth in 1770 to her death in 1853, a period which covers some of Europe's and, in particular France's, most tumultuous times. The aristocratic-born Lucie de la Tour du Pin saw most of it up close and personal.

As always, we started by each of the seven members present giving her impressions, which are summarised as follows:

• A couple noted that the book was "solid going" and perhaps included more detail than was needed. Most of us felt that a time-line [there is one in the Kindle edition] and family trees for Lucie and her husband Frédéric would have helped.
• We varied in our knowledge of the French Revolution, and some wondered whether knowing the history would have helped their enjoyment. However, everyone - at least those who had finished it - were glad they'd read it, and most of those who hadn't finished it said they would keep reading it!
• Most of us found it a interesting story, and thought Lucie must have been "quite a person" to survive what she did. Resilient was the word most of us used for her. We all admired her for what (and how) she survived.
• Some found the book harder going at the start, feeling there was not much substance to her in the beginning, while others liked the beginning and felt it got bogged down in detail as the book wore on.
• One of those who liked the book's beginning did so because of Moorehead's introduction of the 18th century philosophers, such as Voltaire, Diderot, and Rousseau.
• Most found the book well-written, but some felt that it could have been a little tighter or more focused which might have seen some more extraneous detail omitted.
• While some found the amount of detail - particularly the huge cast of characters - overwhelming, we did enjoy the details about life at the time. Moorehead paints, we all felt, a vivid picture of France of the period. We liked the description of the huge hats, the smells, the food, and so on.
• A couple noted that they particularly enjoyed reading about Lucie's time in America, with one wondering whether that's because Lucie was particularly happy there.
• One member commented on parallels to modern life - such as the challenge of taxing the rich, and the idea of "fake news". She felt the book had a modernist feel.
• The member who recommended the book would love to read Lucie's memoirs, from which much of the biography was drawn, and which, apparently have never been out of print. 

Overall, one member said, and we all agreed, it is a "dizzying" read.

We commented that the book's title comes from Lucie's own words about the period leading up to the storming of the Bastille: "Amid all these pleasures we were laughing and dancing our way to the precipice." Moorehead writes that Lucie added that while this blindness was pardonable among the young, it was "inexplicable in men of the world, in Ministers and above all, in the King". Not surprisingly, then, we spent some time discussing the politics of the time, including Lucie's aristocratic leanings. Moorehead presents Lucie and Frédéric as having strong moral values, but as nonetheless believing that aristocrats should be in control, that they were the best people to govern. They supported a more English-style of constitutional monarchy, rather than a republic.

We discussed Frédéric's diplomatic work for Napoleon in Brussels, his refusal to carry out some of Napoleon's harsher orders, and his recognition that the nobility was often happier to give up their sons to Napoleon's cause than their money! We noted that, although Lucie was a monarchist, she was fascinated by Napoleon, and managed to win his approval. She was astute about people - managing to retain powerful friends like Talleyrand - and this, together with some lucky decisions about when to leave France, ensured their survival through tumultuous times, despite their royalist leanings.

We were fascinated to meet various characters we've heard of - but didn't know or had forgotten where they fit into history - such as writer and diplomat Chateaubriand, bishop and diplomat Talleyrand, and salon leader Mme Récamier (who was depicted by many artists of the time, including Jacques-Louis David.) We also enjoyed references to American and English figures like Benjamin Franklin, Thomas Jefferson, and Lord Wellington.

We liked Lucie's describing her life, in a letter to god-daughter Félicie, as being like "a chest of drawers" with each drawer representing skills she could draw on when needed. When she needed those of being a lady or ambassadress, for example, she would close the housewife drawer, and so on. Lucie proved herself again and again to be resourceful, practical and a hard-worker, skills she had to learn as a young child growing up in the emotionally cold home of her grandmother Mme de Roche.

A couple of members liked Frédéric's throughts on history, which Moorehead described as follows:

He now spent much of his time in his room, reading and writing to [grandson] Hadelin, long letters mulling over his own life and urging the young man to study, to think on serious matters, to develop a taste for reflection. He should turn, he wrote, towards ‘the vast questions of humanity: there you will find true riches’. More than anything Frédéric ever wrote, these letters to his grandson revealed a thoughtful and liberal man, intelligent, full of fears and doubts about the future, and intensely clear about the nature of responsibility. It was in history, he told Hadelin, that he should seek to find ways of understanding the world, and to learn how to make his mark on it; for it was to history that ‘one must look to discover motives and judgements, the source of ideas, the proof of theories too often imaginary and vague’. Reflection, he added, was ‘the intellectual crutch on which the traveller must lean on his road to knowledge’.

Other aspects of the book that we enjoyed were its portrayal of the life of France's émigrés (a term which was created during this time), many of whom left and returned to France more than once over the decades of upheaval. We enjoyed reading about the ways they supported themselves while away from their estates - making hats, cooking, teaching dancing, and so on.

We were surprised to discover that the idea of "the left" - referring in this case to the "anti-monachicals" - was first used during France's revolutionary period. We also talked about about other historical figures who were born around the same time, such as Beethoven (in 1770) and Jane Austen (1775).

One member said she'd read that the book is "novelistic"* but another strenuously disagreed, arguing that the book reads as straight biography rather than as belonging to those non-fiction writings sometimes described as "creative" or "narrative" non-fiction. Yes, there is a narrative to the story, but it is in the form of a typical chronological biography, and yes, there are some lovely descriptions, but most of these stem from Lucie's own writing. Moorehead, she argued, has not had to fill in gaps in knowledge, for example, by using the sort of narrative techniques found in novels/fiction and which might justify the use of "novelistic" to describe this book.

Those of us who didn't know were surprised to discover that author Caroline Moorehead is the daughter of Australian journalist and war correspondent Alan Moorehead and his English wife.

Overall, we agreed that Dancing to the precipice was an interesting book that either taught us, or reminded us, of a fascinating time in European history.

* POSTSCRIPT: After the meeting, I found that one reviewer described Lucie's life as being like one you might find in historical fiction. It may have been this rather than the style of writing which prompted the "novelistic" description.

Jane Fletcher Geniesse's Passionate nomad: The life of Freya Stark

Bravely departing from past practice, we started this year with a biography rather than a chunky novel - and it was a success, perhaps because being women of a certain age we were ready for a story about an intrepid woman traveller! The book was Jane Fletcher Geniesse's biography, Passionate nomad: The life of Freya Stark. Stark (1893-1993) was a British-Italian travel writer, explorer/adventurer and historian, specialising in Arabic studies. She was one of the first non-Arabians to travel through the southern Arabian deserts.

Several members were reminded of their early love of Lawrence of Arabia, and one was inspired to go on to read a history of the Middle East, James Barr's A line in the sand: Britain, France and the struggle that shaped the Middle East. There was one nay-sayer though, who wasn't "loving" it, partly because biography is not her thing, but she said she was enjoying it because she was fascinated by Stark.

Who was Freya Stark?

Active in the Middle East from the late 1920s to the mid 1940s, and moving among her era's movers and shakers, Stark was a strong, spirited woman - one who worked very hard and took significant risks to achieve some remarkable things, particularly in those very gendered times when women had to fight for independence and recognition. She was "amazingly resourceful" said one member. We all enjoyed this story from the book:

She reentered Luristan on a donkey, draped in native clothing, three Lurs at her side as guides. She bluffed her way past the border guards. (“The great and almost only comfort about being a woman,” she said, “is that one can always pretend to be more stupid than one is and no one is surprised”). (Ch. 8)

And so, on she went, navigating truly dangerous places and handling tricky wartime projects. She was fearless said one member pointing out that this means she wasn't afraid, versus being "courageous" which means taking action even though you are afraid.

Stark was, though, paradoxical. She made long-standing friends, and yet would also use people (and her health) to get what she wanted. She would drop friends if they offended her or were no longer useful. She was "a bit of a princess" we agreed and was surprisingly anti-feminist, like some other strong women before her, including (her predecessor and self-imposed rival) Gertrude Bell. Stark preferred male company, and was keen to have male bosses (in preference even to being the boss herself, though she still fought for, and won, equal pay for herself from the British government). She was competitive and could be venomous, something that her publisher, in particular, tried to tone down (and sometimes succeeded in doing so), when she wrote up her experiences.

Geniesse argues that much of her paradoxical behaviour came from growing up within an unhappy marriage that broke up by the time she was 10 years old. She adored her self-centred mother, and yearned for her approval. She finally got it with her successes as an adult but that was long after the die was cast.

She felt insecure about her appearance, and wished always that she was beautiful. She was also apparently naive about some things, being unaware for example, of the gay men in her midst and, disastrously, accepting, later in life, a marriage proposal from one of them.

We were surprised to discover that some editions of the book had an epilog which explained that Freya was probably not her father's daughter but the result of an affair. It is possible that Freya never knew this, however.

Other issues that interested us

Stark was of course the main focus of our interest, but there were other aspects of the book that we enjoyed. Our GP member was interested in the medical aspects. Geniesse provides quite a bit of detail about the many illnesses Freya suffered and the medications she took. It's amazing, we thought, that she survived until she was 100 years old, given the maladies that befell her through her life. Early on Geniesse tells us that both her parents "placed a strong emphasis on stoicism". She clearly learnt that lesson well.

Stark's main claim to fame was being her time's "most respected experts on the Arab world". We all enjoyed the descriptions of her travels there - but, given the Middle East's subsequent history, we were particularly interested in her theory about how the region should be "handled", a theory she developed over time and promulgated to the British and, in 1944 on a lecture tour, to the mostly pro-Zionist Americans. Respecting people's sovereignty, she believed that any decisions must be made with the Arabs’ consent. "We musn’t impose solutions,” was her mantra. As we all know now, her view didn't prevail.

The biographer's craft

While a biographer's task is half done if the subject is interesting, it still needs to be written skilfully - and this, we thought, was. We particularly liked that it wasn't hagiographic: the Freya we saw could be charming and petulant, wise and imperious, intelligent and petty. Geniesse managed to present all that with an even hand, recognising what Stark achieved but also seeing her failings and sorrowing for their impact on her.

The book is cleverly structured. Geniesse captures our attention in Chapter 1, showing us who Stark was to become by describing her first arrival in Baghdad. Chapter 2 then takes us back to her birth and her story is then told chronologically.

One member also pointed out the lovely quotes which start every chapter, most if not all from Stark's writings. We felt that, although we'd decided to read a biography of Stark rather than a work by her, Geniesse  had included enough excerpts of Stark's writing to give us a good feel for her style and tone. Here, for example, is Stark commenting in The valleys of the Assassins on Elders refusing to show interest in her, a strange white woman who appeared out of nowhere:

It is a remarkable thing, when one comes to consider it, that indifference should be so generally considered a sign of superiority the world over; dignity or age, it is implied, so fill the mind with matter that other people’s indiscriminate affairs glide unperceived off that profound abstraction: that at any rate is the impression given not only by village mullahs, but by ministers, bishops, dowagers and well-bred people all over the world, and the village of Shahristan was no exception, except that the assembled dignitaries found it more difficult to conceal the strain which a total absence of curiosity entails.

We discussed much more - such as the Yemen expedition fiasco with archaeologist Gertrude Caton Thompson - but I've written enough, I reckon. In the end, we loved that she was one of those larger-than-life grand dames that we all love to read or hear about. A great read to start off our year.

Hazel Rowley's Franklin and Eleanor: An extraordinary marriage

It was pretty much a full house when Minervans met this week to discuss Australian biographer Hazel Rowley's last book, Franklin and Eleanor: An extraordinary marriage. Ten members turned up - with the only absentee being the person who first suggested it. We're not complaining though, because everyone, it appears, enjoyed the book. One, in fact, admitted secretly to preferring biography to fiction; some were surprised by how much they enjoyed it. The overall comment was that it was readable, engaging.

We started our discussion with our absent member's comment on our Facebook event page. She wrote that:

It is a beautiful piece of writing which shows just what an extraordinary period of change that first half of the 20th century proved. However, I did miss some of that Janet Malcolm style of careful consideration of where the biographer fits in with the story...

None of us had read Janet Malcolm (though we checked her on Wikipedia) and so were not quite sure exactly what Helen meant. Helen, if you read this post, please tell us in a comment!

Eleanor Roosevelt's White House Portrait
(Public Domain,  courtesy US Government via Wikipedia)

Being women, we probably focused more of our discussion on Eleanor. Reasons we liked the book included the description of the rich (not as in "wealthy" though they were that too) lives they led, and the fact the Eleanor was a multi-dimensional, sophisticated person who could interact with many peoples on many levels. We discussed how driven she was by her mission - which mostly related to social justice issues such as equality and respect for black Americans.

We of course commiserated with Eleanor over Franklin's betrayal of her with Lucy Mercer in 1918 and discussed why they stayed together. Rowley gives pragmatic reasons - his mother threatened disinheritance, his political advisers said it would be the end of his political aspirations - but also suggests that there was love and affection between them, and that Franklin "still loved Eleanor; he knew how much he needed her". In the preface Rowley describes their marriage as "a joint endeavour, a partnership". It certainly seems it must have been that, as they stayed together for 40 years, until Franklin's death in 1945. However, we also wondered whether Eleanor's insistence on retaining Mrs Nesbitt as the White House housekeeper - the White House during their unusually long occupation was renowned for its indifferent cuisine - was a passive-aggressive act on her part, though others suggested it was simply that Eleanor didn't care much about food.

One member admitted that Eleanor had the life she would like to lead. Others weren't quite so sure.

We liked the description quoted near the end of Eleanor's blend of "naiveté and cunning".

We touched on some issues relating to the writing of biography, such as the challenge Rowley had in teasing out fact from mythmaking, particularly given some of the primary sources were written with a view to future public use. We felt Rowley was not judgemental but maintained an even-handed tone throughout, despite appearing to be more interested in Eleanor. Perhaps this focus is due to the fact that there are more primary records for Eleanor's part of the marriage. She, for example, kept a diary and wrote her "My Day" column for the newspaper, while Franklin kept no journal. I felt that while it was well-researched, and well-written, there was something missing, something Rowley probably didn't (couldn't) know regarding just what was the "glue" that kept them together. How much was real affection and how much pragmatism? That's something we'll never really know though the evidence Rowley presents tends to suggest mostly the former despite the myriad other romantic friendships and relationships each had. It really was an extraordinary marriage.

Being Australians, many felt they did not fully comprehend the history of the period. We recognised though that Rowley's book was not intended to be a history but an analysis of the marriage. Having lived in the USA, I said that there is still evidence today of Franklin's New Deal, and particularly the work of the CCC and WPA programs in and around the National Parks and some of the major scenic roads. Susan said she had visited Hyde Park, the Franklin D. Roosevelt Presidential Library and Museum. She said it was beautiful and fascinating, though also carefully curated (if you know what she means!).

A couple of us commented on the lovely accolades given on FDR's death. We particularly liked this one:

'His face was the very image of happiness,' Albert Camus wrote in the French Resistance newspaper, Combat. 'History's powerful men are not generally men of such good humour ... There is not a single free human being who does not regret his loss and who would not have wished his destiny to have continued a little longer. World peace, that boundless good, ought to be planned by men with happy faces rather than by sad-eyed politicians.'

And that seems as good a place as any to end this report. Comments anyone?