The Immortal Life of Henrietta Lacks

This blog follows a series of accidental incidents to uncover some history that affects everyone.   It started out as medical journey, but covered corporate, legal affairs and personal histories.  Rebecca Skloot discovered the name of Henrietta Lacks while studying in a make-up course.  Her efforts ran up against many barriers, resistance within family, and hunting for people to give information.  The movie as well as the book recount phones being hung up and doors closed.  Inevitably one lead led to another.   Another student learned from a name overlooking an urinal.

As for me, learned about book from Chris, a librarian participating in a seniors phone in program that I only learned about as my daughter was one of the organizers.  While wading into the book I was able to visit our local library that had only opened up for browsing two days previous.  Because of the Covid-19 pandemic I also was reluctant to touch objects and so did not sort through DVDs, but spotted the name and investigated to find the film that dramatized some of what I was reading.  Oprah Winfrey not only played a leading character, but also was a producer.

It could have been a medical history book covering the technical details of what the cells meant for science and some of the challenges along the way and for many that would be sufficient.  Nothing happens in isolation.  There were legal and economic developments that expanded the scope  Easily the family involvement could have been minimized.  With this book and film we understand better that everything is connected.

World famous Johns Hopkins Hospital provided free medical care for poor people who were mostly black.  They also did a lot of research.  At the time there seemed to be little concern about getting permission to use cells and other body parts for research

Henrietta, a poor black woman felt ill and sought medical attention.  Cervical cancer was identified and eventually killed her in 1951.  The doctors took cell samples from cancerous tumors and were expecting they would have a limited life.   They were surprised to learn that her cells kept multiplying.  This allowed them to sell her cells indefinitely for a very wide range of research which included cancer, polio, diabetes, AIDS.  Cosmetic testing has involved live animals, but her cells offered an alternative.  Her cells have been sent to space and been involved in nuclear explosions.  The entire global community has benefited.  Some racists would be shocked if they realized they have benefited from a poor black woman.  We have all been impacted, if only for what didn't happen to us or a loved one.

After Rebecca, a white woman had her curiosity piqued she found it difficult to get information.  Information was almost non existent at first, but getting access to computers and the inter-net opened up possibilities.  She eventually learned of family contacts, but learned they were suspicious and  felt abused.  As they understood the impact of Henrietta's contributions some of them felt entitled to some compensation as most of them were poor.  Others felt their mother/aunt/friend deserved recognition and they wanted to know more.  Earning their trust took up most of the author's time, but it also opened up the scope of her message.

The Nazis used prisoners to do medical experiments.  After the war their actions were condemned in the Nuremberg Code.  Long before the Nazi actions, black slaves had been experiment subjects.  Slave owners told slaves that ghosts were responsible for death and sometimes paraded around in white sheets to frighten their slaves which evolved to the Ku Klux Klan uniforms.

In 1957 informed consent" became a legal term limiting use of humans and human parts in experiments.  On the other hand some scientists,were able to overcome court objections to patenting body parts by arguing that engineered bacteria was only possible by human intervention and could be of service for mankind.

The case of David Moore illustrates how duplicitous some medical doctors can be.  Working in Alaska he developed a type of rare cancer and had been referred to a doctor at UCLA who removed his spleen.  David had signed a consent form authorizing the cremation of any body parts left over.  After the surgery David moved to Seattle, but made regular trips to Los Angeles and gave up blood, bone marrow and semen as part of a followup  He decided all that could be done by a local doctor and when he announced this he was offered plane and luxury hotel fare. He was also asked to sign a new consent form that would allow UCLA to have the rights for any products that might be developed from his blood or bone marrow.   Fearing a refusal might jeopordise his treatment he  signed, but when a future form was given he asked if there was any commercial value from his followup visits and was told no, he decided to not authorize any rights.   The doctor's office followed up asking him to correct his mistake several times, but eventually David sent the form to a lawyer.  They learned that the doctor had in fact been using the physical materials to develop a cell line.  It was estimated that the cell line would be worth over $3 billion dollars.

In the meantime the Lacks family had been asked to give blood samples and had been told it would help protect them from cancer.  The real story was that with the popularity of Henrietta's cells the problem of contamination developed.  Scientists realized if they could use family DNA markers they could separate contaminated cells and continue with valuable experiments.

Tissue banks have developed and provide critical resources that benefit everyone.  The author had pointed out that  beyond the issue of money, some patients might object to research that offended their religious or philosophical  sentiments.  The issues are still evolving.

Henrietta's cells turned out to be have an enormous commercial potential.  The original gatherer of her cells, Dr. George Gey did not charge for Henrietta's cells, but a cell bank did.  Relying mainly on her cells Microbiological Associates became part of Invitrogen and Bio Whittaker, two large bio-tech companies.  Altogether there were 17,000 patents based on what were called HeLa cells.  HeLa is a contraction of Henrietta Lacks and helped disguise the personal connection.
 
To obtain family medical records Rebecca dealt with different family members who were distrustful and had their problems.  A key contact was Henrietta's daughter, Deborah portrayed  by Oprah Winfrey.  An elder sister had died under unknown circumstances and it appears she was mentally challenged and possibly suffered epilepsy and eventually it was learned had been poorly treated.  One of Deborah's sons had been involved in violent crime as had one of her brothers.  The reader is aware that family was kept deliberately ignorant and suffered poverty which leads to desperate decisions. 

Rebecca had many contacts with the family and delved into their genealogy which included a white branch.  The blacks knew of the white connections, but did not socialize.  As is becoming common knowledge many slave owners had sex with their female slaves resulting in mixed race.  Recently it was brought up that Kamala Harris had some white slave owners in her family tree.  This was presented as proof that she is a hypocrite but overlooks that such relationships were the result of coercion or unequal power and were common.

Human tissue has been commercialized and have saved (or prolonged) countless lives.  A few patients have participated in huge profits.  In public, organs are not supposed to be charged for, but in reality organs have been paid for in the black market.  Also it seems wealthy people seem to be at the front of the line when organs were needed.  Another concern is the right to approve research projects as some might go against religious or personal beliefs.

While reading this book I was also following coverage of the Covid-19 pandemic  and heard Dr Seema Yasmin raise concern that in the search for a vaccine it would be optimal to test a wide variety of humans including blacks.  A legacy of blacks being  exploited for medical testing is that many avoid such tests because of previous history. 

The book is unique in its range.  The author let us follow her efforts to get medical information with the family and had to deal with all their dysfunctions which in turn led to an exploration of legal and ethical implications with some racial overtones.  The medical discoveries were very interesting in their own right, but as with everything else in creation they are part of a bigger context. 

CHARITIES AND ENTERTAINMENT IN DESPERATE TIMES

Ideas are a luxury in desperate times.  A core function of society is agriculture (while its predecessor hunting and gathering is still a sub set) and it might be argued that energy is even more basic.  The Covid 19 pandemic is reminding us that survival cannot be taken for granted.  Focusing on survival shunts aside many endeavors that we now better appreciate are really luxuries.  Luxuries are what we are able to indulge in when we have created a surplus of what is needed to survive

A confession before pontificating.  I find beggars very annoying and guilt inducing.  My experience has taught me that we live in an inequal society that favors the wealthy and the powerful.  I can now better appreciate there will be some adjustments in society's power arrangements with a lot of little people further marginalized.  Ideas are a luxury, but they are what make us a civilization and I hope we can survive as one.  This more or less summarizes my attitude for this post.

Entertainment is a luxury that is already being curtailed.  The major sports businesses have all been shut down and all gatherings of spectators for music and theatre are locked out.  We can still eat, but not so much at restaurants.  Much of our entertainment has filtered down to electronic which ultimately means fewer and fewer people will be required as we will be able to view the best of the best rather than the corner bar singers for example.  You can see read paper books, but as I am learning more of that is electronic.  Entertainment of all sorts was very critical during the Depression of the 1930's, but there was no concern about large crowds so we will be making different adjustments

Charities boil down to begging.  These are the causes that we are concerned about, but not enough to distract too far from many other human endeavors.  We have assuaged our guilty conscience by allowing the government to fulfill some of these functions, but are careful to make sure our taxes don't cramp our lifestyle too much.  Many of us have personal concerns often where a disease has harmed our loved ones and many of  efforts have been partially taken over by governments, but not enough to solve the problem.  Perhaps it is better to maintain a role for the individual conscience.  For others they are conscious of discriminated against either their own group or that of another.  Still others feel society would be better off if awareness of some cultural activity were better appreciated.

In times of desperation as right now, charities are minimized.  Many of those who have asked for assistance now feel guilty for asking.  There are reasons we should give what we can afford if we really want to keep our civilization functioning.  Charities perform functions that we all benefit from.

Jobs are important.  We live in a world where it takes fewer and fewer people to supply the necessities and even luxuries.  We still have beggars who somehow slipped through the cracks (and in some cases as many suspect, are deceptive) but they do in fact help circulate revenue.  Some employees of charities got the job as they weren't able to get a better one, if any.  Some specialize and have developed skills for raising revenues in a competitive world, even for charities.  Like the rest of us they may well have to sacrifice some of their income and some likely will lose their job and have to seek another way to make their ends meet.  Still those making a living appealing to our conscience not only help our economy, but can feel good as they are lessening the burden of others.

Research (thinking of charities for diseases primarily) also provides jobs, but not just any job, ones that are value added.  While scientists discover something to better deal with one disease they often find applications to others.  I recall learning that research for Parkinson's has overlapped with research for Alzheimers (something more people fear).  The understanding gained through scientific research helps us all appreciate how everything is connected.

Another function of charities is advocacy.  The disabled have most often been cast aside as not only not able to function productively, but disturbing for the rest of us have to work with.  With disabled legislation gradually making life more tolerable for them it has also made them more productive and everyone has benefited.  This also applies to those who have suffered discrimination and been denied a more suitable role in society.  Causes such as climate change, refugees, endangered animals, etc. are deemed important by individuals and groups.  Even those promoting cultural activities have (mostly) enriched the lives of those who appreciate something otherwise unknown.

Some people get paid to advocate for special interests (including charities) and we call them lobbyists.  They form a useful function, although much abused.  Some thoughts on their role at:  http://www.therealjohndavidson.com/2020/03/coronavirus-lessons-how-one-makes-money.html

Caregivers have either been forgotten or taken for granted.  Charities can relieve some of this burden and help make some people more productive.  Much of care giving is voluntary such as family and friends or just concerned citizens.  For others care giving is a paid job that someone has organized for the necessary resources and persuaded someone to provide money.

Survival is no trivial thing and we all will be looking at what we now better appreciate are limited  resources.  But if we want to retain a sustainable and satisfying civilization we need to be open to ideas.  Charities are an idea that is part of society and that benefits everyone.  Hoarding resources may seem necessary to survival, but human survival demands a more open and sharing society.  Earlier I blogged about how it seems this pandemic will make us more conscious of how we all make money:  http://www.therealjohndavidson.com/2013/04/lobbyists-do-deserve-more-appreciation.html

The Entreprenurial State

It has become common to believe that the government should keep its hands off business and job creators.  This idea is amplified by the right wing.  It is very true that individuals have intelligently, persistently, luckily and perhaps above all courageously brought civilization forward in an economic sense.  Real innovation is often against the status quo.  It also is true that when people band together they can accomplish more things.

There will always be a delicate balance between individuals and the collectivity.  It is true that we are all pressurized by our peers not to step too far out of line.  Status quo is comforting for many people.

I first saw Mariana Mazzucato on TVO's The Agenda with Steve Paikin.  Her comments stood in stark contrast to what I consider blow-hard opinions.  The blow-hards are basically self righteous individuals who have achieved success or visualized it, as separate from government.  They overlook their good fortune and the support they received from many quarters including government.

She links herself to John Maynard Keynes and Joseph Schumpeter.  Keynes is the one known for advocating increased government spending when the economy is depressed and Schumpeter is the one known for advocating innovation as the key to growth.  When times are tough private businesses curtail their spending including research leaving the government, if willing, to pick up the slack.  In good times Mariana finds that private business is really only interested in the short term.

Risk is a term used a lot, particularly to justify higher returns.  Another term Mariana likes to draw attention to is "uncertain."  There are many factors (including risks) that can be gauged as probabilities, but there are many other factors (unknown unknowns) that are not at all predictable.  These other factors can have a positive or negative impact on success, but in the field of basic research they can lead in new directions.

World War II provided an opportunity.  During the war scientists were gathered together to work on many military tasks perhaps culminating with the the Manhattan Project.  Working together and across disciplines they pointed the way to maintain military superiority.  After the war, groups developed to maintain competitive strength.  Defense Advanced Research Projects Agency known as  DARPA was one result.  Sputnik spurred even more research funds as the whole country felt threatened.  The Japanese were a few steps ahead regarding semi-conductor research and this was also a concern.

Their research provided the basic building blocks for iPhone, iPad, GPS, many pharmaceuticals, etc. etc.  After the expensive and risky steps had been taken some sharp people like Steve Jobs and many others were able to put products together that were commercially viable.  In fact most businesses and even venture funds shied away from expensive risky research, especially where they could not see a quick commercial application.

Today many see climate change as the number one priority.  Usually successful new technologies are disruptive to old technologies, i.e. creative destruction. The fossil fuel industry (oil, natural gas and coal) have had a long development (entrenchment) with large very significant sunk costs.  They have all the power to resist and the comfort of consumers on their side.

Bottom line:  do innovators give back to the community that supported them when it was needed?  Apple is used as an example--much of the basic research and development was done through government resources. But jobs go where they can be done cheapest and the company has developed strategies for minimizing taxes.  They are not unique.

A few conclusions.  The government can have a critical role in innovation and is in a position to take necessary risks on behalf of its citizens.  The government needs to recover some of its costs from developing innovations in part to continue its role in innovation.  Taxation is one way and even equity positions might be another.  The government above all needs to be recognized for its role.  Marianna makes many too often overlooked points and some useful suggestions.

I would add one more detail that the government provides towards innovation and that is education.  Some will point out innovators who dropped out of school and to be sure there are plenty to be found.   There are just as many innovators who were inspired by a teacher (in the formal system or outside).   To communicate their discoveries someone needs to read, write and understand, skills most often acquired in formal education.

The lion and the pussy cat on the cover were inspired by some words of John Maynard Keynes who was talking about animal spirits with regard to business.  The question is which animal represents business and which the state.