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.
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