Informed Consent
There was a woman, and her spirit still lives – or does it?
Where does spirit begin and end?
If your cells are still dividing, in numbers larger than humanly capable; your mitochondrial DNA is still thriving, but your body is long gone – Where do you exist? Are you there? or Here? Where is where?
For more years than she was alive, she has been known as HeLa. Mistaken as Helen Lane & Helen Larson, but mostly not even thought about at all, just as HeLa, for Henrietta Lacks.
You may have heard of them. In Grade 10 Biology. In Research. You’ve certainly used them, supported them, maybe even hated them. I knew of her because of the Hayflick Limit: that all human cells can only divide a maximum amount of times – except for HeLa cells.
Something was special about these cells, about this woman.
No other cancer cells were able to divide forever.
In 1951, Henrietta Lacks passed away. Her cancerous cervical cells were taken for culture while in treatment – as were most hospital inmates’ – and hers seemed to keep multiplying, when no other cancerous cells were able to. Because of these cells, we have been able to perform research on medicines, vaccines, cellular damage, space travel, much of scientific progress. Scientists from far and wide know of HeLa.
“What a contribution!” they say, “Her family must be proud.”
Unfortunately, the way that ethics, research and racial dynamics of the time played out, her husband and children didn’t know that HeLa even existed. When they did find out, it was many moons later, and indirectly: 22 years later and from a stranger, to be exact. As such, they knew very little about what it all meant and how it came to be.
Once, after this impromptu discovery, medical assistants came to draw their blood, hoping to learn more about these phenomenal HeLa cells by drawing blood of her relatives. The family was told the blood draw was for their own health assessment, and the researchers left without so much as a contact number. The researchers never considered that the family might not understand cell culture and how Henrietta’s cells were still alive, after they buried her 20 + years prior.
As a result of their differences in education, accents, and social status, in essence the Lackses gave uninformed consent to their medical information being used, without having any follow up, or access to it.
Ironically, they have not benefitted from Henrietta’s contribution to medicine:
The Lackses have had no medical coverage and little education. The family’s health is suffering gravely because of it.
I write this, because of a dedicated journalist, Rebecca Skloot, who for years searched and made deep and loving connections with the Lackses, withstanding their mistrust of media and medicine. I cannot do this book justice, for it respects the Lacks family in a way that only a dear friend can. It is a delightfully easy read, with depth and emotion, politics and history, faith and science. If you are interested in any of those topics, The Immortal Life of Henrietta Lacks will satisfy your needs. Rebecca brought forth the story of Henrietta that has been hidden, not just about Henrietta Lacks’ life, but also how medicine has shifted, changed, or stayed the same, in terms of ethics and research.
What I can do is share some of the fascinating concepts of consent that baste this story.
The benefits of Informed Consent are being lost amid the cumulating sea of data and rising societal empowerment (at least in North America). Both society and politics are stuck in a web:
When doctors lose the context of education and communication in consent, informed consent is meaningless.
Patients are unhappy, un-informed and doctors can become presumptuous.
When patients demand treatments, medical ethics is not prioritized, demand wins over caution.
Patients put themselves at risk, and doctors lose their passion for helping.
When medicine is politicized or possessed, information becomes money.
Patients become doubtful, and doctors feel like puppets.
I think bringing focus back to high quality informed consent can allow us to live life with courage and caution. This book is a throw back to why we need to keep getting better at informed consent.
John Hopkins Hospital, one of America’s renowned medical centres, was originally built in 1889 and funded by its namesake, as a charity hospital to serve the poor, sick and underserved. But culture runs deep, and even in the 1950s the hospital had separate wards for whites and ‘coloureds’, even with separate drinking fountains.
It was known that “Hopkins, with its large indigent black population, had no dearth of clinical material” for researchers.
Henrietta’s ‘Operation Permit’ shows the lack of information given to patients:
“I hereby give consent to the staff of The John Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ______________________”
“4 days after the cells were taken, Henrietta’s tumor cells weren’t merely surviving, they were growing with mythological intensity. By the next morning they had doubled. [and soon they realized,] Henrietta’s cells grew to fill as much space as they were given…. Henrietta’s cancer cells seemed unstoppable.”
Where did the ethics fall apart here? When the cell culturist’s closest colleagues said: ‘Can I have some?’ He said yes. Hela cells were soon going to be in hands all over the world, with very little regulation and monitoring, let alone anyone’s consent.
Hela cells grew much faster than normal cells, and therefore produced results faster. HeLa was a workhorse, it was hardy, it was inexpensive and it was everywhere.
In the last century, these are just a few similar ethical incidents in North America:
The Tuskegee Syphillis Study, where hundreds of African-American men with syphillis were recruited to watch how the disease progressed all the way to death, even though they knew that penicillin could cure them.
In 1969, Hopkins researcher used blood samples from more than 7000 neighbourhood children – most of them poor black families to look for a genetic predisposition to criminal behaviour. The researcher didn’t get consent.
- In the late 1990s – There was a study examining lead abatement and all families involved were black. The researchers had treated several homes to varying degrees, then encouraged landlords to rent those homes to families with children so they could then monitor the children’s lead levels.
Individually, Henrietta’s situation is by far the one with the largest global reach. Researchers around the world, in fact all citizens who receive healthcare, are affected by HeLa’s ability to shed light on human cells.
This is not a place we want to come to again, and it was not so long ago. Even currently, there are still battles being fought over people’s removed tissue & cells that have been used in research that they did not consent to.
These are horrible situations for the subjects involved, and part of why the field of medical ethics exists. But putting the leash on research does not address the huge advances in public sharing of information that allows patients to decide what they want, without the guiding hand of a trained physician. There are risks – uninformed and unrecorded risks – of this kind of swing on the pendulum.
There is a space in between overbearing expertise and open public access to all options.
That space is what protect patients from harm and allows physicians and researchers to advance the field they love. Open access without guidance and we risk becoming subjects of an experiment where we cannot research nor understand the results. Give absolute power to authority, and the corruption of human rights is close behind.
My good friend has a daughter named Hella. In German, that means ‘the calm and kind one’. Hela Cells changed the world with their quiet storm. Science has benefitted tremendously, and Henrietta’s story is the only one that can, 60 years later, flush out the sticky topics of benefitting from societal prejudice with questionable ethics, to allow for huge advancements in science and medicine.
There is a full circle somewhere in there. Maybe Henrietta was the only one who could be calm and kind through this tumult.