The issue with tissue donations

Donated tissues are an essential resource in medical research, but joining the dots from these tiny samples to their sick donors can evoke mixed emotions.

 Illustration by  Livali Wyle

Illustration by Livali Wyle

In 1951, researcher George Gey catalysed science’s own Industrial Revolution when he developed one of the first successful cell lines used in culturing. The cell line was created by taking tumour cells from a patient at John Hopkins University and growing them outside of the body. Most human cells grown in this way died after several days, but this particular cell line ‒ named HeLa ‒ survived and thrived.

The development of easy and working cell cultures was explosive. It allowed researchers to study how cells of different types react to all kinds of drugs, exposures, and manipulations that were otherwise restricted. Gey's HeLa cultures were particularly unbelievable ‒ so incredibly resilient and successful that their desire to thrive sometimes even became a problem. They were known to literally ride on dust particles across a lab and contaminate other experiments.

The HeLa cell line was used to develop the first polio vaccine, and for research into cancer, AIDS and the parvo virus. They were the first human cells to be cloned, and they were even sent into space.

George Gey’s cell line started the same way they all have to start ‒ they were taken from a person. In this case, the cells came from an African-American woman named Henrietta Lacks, who suffered from cervical cancer very abruptly and painfully, until it killed her. Lacks did not receive the same medical care she would have had she been white. During one of Lacks' surgeries, a researcher came into the operating room, took a sample of her cells while she was unconscious, and whisked them to Gey to produce the eternal HeLa cell line still used today. Lacks was not asked for consent or ever told.

In fact, her family only ever found out about the HeLa cell line when researchers approached her grandchildren decades later to request further genetic tests.

 
  Much too late, a historical marker in Clover, Virginia recognises Henrietta Lacks’ contribution to medical research.   Emw/Wikimedia Commons  (CC BY-SA 3.0)

Much too late, a historical marker in Clover, Virginia recognises Henrietta Lacks’ contribution to medical research. Emw/Wikimedia Commons (CC BY-SA 3.0)

 

The tragedy of Henrietta Lacks reminds us of what can happen when medical researchers are completely detached from their research subjects. Objectivity is a trait valued by scientists, and rightly so, but what if your study subjects are not fossils or neutron stars, but cells from a fellow human saddled with a cancer diagnosis?

Cell cultures are a staple in almost any lab. They are great for forming ideas and testing things you might not be able to test in humans. There are commercial lines available to purchase for research, but in a field such as cancer research, scientists place greater emphasis on results that have come from real cancer patients.

"Cell lines are easier to obtain,” explains Kevin Danastas, a PhD researcher at the University of Sydney. "[But] actual tissues samples are much more valuable."

Danastas is studying blood vessel formation in tumours and endometriosis, and he knows that any kind of direct human sample is better for the reliability of his research.

The process for working on human tissue, accessing samples, or any kind of patient contact has changed extensively since Gey’s time, obviously for the better. Consent and ethics are now thoroughly ingrained within any medical research goal. It takes a lot of effort to bridge the gap between “lab work” and “hospital work,” especially if you haven’t been involved with patients before ‒ months of emailing, meetings and negotiating with doctors and clinicians. The ethics submission process itself can then take more months, even years, depending on what you want to do.

But once you get there, and everyone involved is happy, consenting and onboard, it is a fantastic step in your research to be involving patients. And this is why, once all these hurdles are jumped, it is so easy to get viscerally excited about using donations, and to kind of forget where they’re actually coming from.

I am a cancer researcher myself. At a recent conference, I mentioned to a colleague that I had just been approved to use tissue samples from cancer patients in my research.

She replied, “Oh awesome, that’s great. Well, not great ‒ but you know what I mean”.  

I did know what she meant. Gaining access to tissues samples from real people, with real cancer diagnoses, will be fantastic for my research, but these samples must come from somebody.

 
  It can be difficult to associate research samples, such as these HeLa cells, with the real person who donated them.   Euan Slorach/Flickr  (CC BY-NC-ND 2.0)

It can be difficult to associate research samples, such as these HeLa cells, with the real person who donated them. Euan Slorach/Flickr (CC BY-NC-ND 2.0)

 

I have been asked many times if I’m ever affected by studying cancer, as I personally know people who are chronically suffering from the very thing I spend my days looking at. And I’m not. But medical research is not a narcissistic or unempathetic endeavor just because we get excited about using donated tissues ‒ after all, our work aims to benefit people with those exact diagnoses. But what is so often forgotten in the lab is that right now, in the present, our research is still unequivocally dependent on the steady stream of people being told something about their bodies that nobody wants to hear.

In her book The Immortal Life of Henrietta Lacks, Rebecca Skloot discusses how a tissue sample, once it enters the lab, becomes a tool rather than a reality. "Scientists don’t like to think of HeLa cells as being little bits of Henrietta," says one researcher in the book, Robert Stevenson, "because it’s much easier to do science when you dissociate your materials from the people they come from”.

While Lacks’ unknowing contribution to science was also a result of race and consent issues, the disassociation Stevenson describes is very much still a thing.

Medical research is only possible through an inherent collaboration between the researcher and the patient, even if they are usually oblivious to each other. For a researcher, it is very difficult to look at some numbers on a screen that have been added together, averaged, graphed and repeated, and relate them to the very real person who is currently being physically affected by those numbers.

Yet the opposite extreme isn’t necessarily desirable, either. To be deeply and emotionally aware of these connections would be impossible ‒ and quite frankly, unhealthy. I doubt I could come into work if I were constantly thinking about the patient behind my samples all day, but I also try not to completely separate my samples from the reality of that person’s illness. De-identification of tissue donations is a necessary part of the scientific process, but complete disassociation isn’t.

 
  Medical researchers should focus on microscopic details without losing sight of the bigger picture.   National Eye Institute/Flickr  (CC BY 2.0)

Medical researchers should focus on microscopic details without losing sight of the bigger picture. National Eye Institute/Flickr (CC BY 2.0)

 

Obviously there are clinicians and doctors who work closely with patients, and these researchers are faced with the opposing mentality; they can’t stop thinking about the reality of the disease. But a pure, lab-confined researcher rarely has this kind of relationship with cancer patients.

 “It’s not something I’m constantly aware of when researching,” says Kevin Danastas, the PhD researcher. “I think being in a lab environment and not around patients makes you detached from how it affects people.”

This detachment, suggests Danastas, comes not only from researchers’ physical isolation in the lab, but also from differences in how scientists and the public talk about cancer.

In the media, amongst friends or family, cancer is an emotionally impacting diagnosis, a scourge that must be fought and raged war upon. It is the endless supply of machine-inspired analogies: the car with no brakes, or the train off its tracks.

In the lab, cancer is simply a bundle of cells behaving badly ‒ a web of interconnecting biological processes influenced by a myriad of effects.

Loretta Lau, a paediatric oncologist at the Kids Research Institute at Sydney's Children’s Hospital, heads a small research group that studies neuroblastoma, a disease whose patients are usually under age five. Neuroblastoma is diverse in how it affects people, Dr Lau explains, with half getting a good prognosis, and the other half getting a bad one.

When asked if language can expose a divide between how scientists and the public view tissue donation, she replies, “No, it is not something that I have noticed before”.

Dr Lau explains that the parents of these children donate samples simply in the hopes it can help others in the future. Without their collaboration, her work is impossible.

“I am fully aware that there will be no research and no progress without the availability of these specimens”.