DNA: what is yours Worth?

Introduction

The HeLa cell was discovered in 1951 from a cervical tumor taken from a cancer patient named Henrietta Lacks. These cells were important because they did not die after a few days like previous ones did because they were able to create a cell line. If one cell died, scientists used another one from the same sample. (1) These cells have led to scientific breakthroughs and new treatments and information surrounding the human body. The primary ethical question in the book, The Immortal Life of Henrietta Lacks by Rebecca Skloot, is whether it is ethical to use patients DNA to make scientific discoveries without their knowledge and continue to use it without notifying or compensating them.

To determine this, we must look at the relevant facts of informed consent, the monetary loss and gain for both parties, the previous and future precedents set by research similar, and the technological advancements this discovery led to in science and technology. Not only Ms. Lacks, but her family members, and even the author Rebecca Skloot had a stake and were affected by the way this ethical question was resolved. To solve this ethical dilemma, we consider respect for persons and autonomy. Relevant Facts The first fact considered is informed consent. It does not matter what the intent was of the doctor, they must have received informed consent from the patient, Henrietta Lacks.

Informed consent is that “a physician (or other medical provider) must tell a patient all of the potential benefits, risks, and alternatives involved in any surgical procedure, medical procedure, or other course of treatment, and must obtain the patient's written consent to proceed.” (2) Toward the end of her treatments, Henrietta asked her doctor when would be able to have another child. Until then, Lacks did not know that the treatments had left her infertile. Lacks was not properly informed of the risks associated with the procedure she was involved in.

When the doctors took the HeLa immortal cells, she had no idea it was even being done, therefore there is no possibility she could have given informed consent. Skloot stated in the book, “...no one had told Henrietta that TeLinde was collecting sample or asked she wanted to be a donor—Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta's cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish. (3) The patient did not give consent of any kind regardless of informed. The laws on informed consent are very clear, and not informing Lacks of this procedure was an ethical and legal violation.

The second relevant fact to consider is the total monetary loss and gain for both parties. Henrietta Lacks was from a poor, minority family. They had serious financial troubles throughout the book. These cells have created hundreds of scientific breakthroughs resulting in massive payoffs, to everyone except Henrietta Lacks and her family. In the book Skloot state, “In the early fifties, scientists were just beginning to understand viruses, so as Henrietta's cells arrived in labs around the country, researchers began exposing them to viruses of all kinds—herpes, measles, mumps, fowl pox, equine encephalitis--to study how each one entered cells, reproduced, and spread.” 

For comparison, women who donate their eggs receive anywhere from $5,000-$10,000 a donation, plus more if the eggs have a desired quality or trait. (4) These cells donated by Henrietta lacks were desired by every scientist in the country. These were the prime cells, yet the Lacks family received no compensation for the medical donation she unwillingly made. Her family would have benefited greatly from the compensation as seen through their financial struggles in the book. The third relevant fact is looking at previous precedents set by similar cases when regarding the scientific contribution of technology made from discoveries using these HeLa cells.

Scientific contribution and technology have a two-way relationship; “Science may drive technological development, by generating demand for new instruments to address a scientific question, or by illustrating technical possibilities previously unconsidered. In turn, technology may drive scientific investigation, by creating demand for technological improvements that can only be produced through research, and by raising questions about the underlying principles that a new technology relies on.” (5) This is important because both fields are being furthered as a result of the other.

Laws in our society are not only created by the legislation we pass, but by the precedent set in supreme court cases. Henrietta Lacks’ HeLa cells happened to be one of the first cases arising from the ethical question of compensation for donation. Cases after have looked towards Henrietta Lacks as guidance of whether donations should be compensated. A point that one article makes is the “lottery factor”; “Millions of patients donate tissue altruistically for research, but doctors and researchers can’t know at the outset whose donation, if any, will end up making money.

“It’d be like winning the lottery,” says Truog. “For every blockbuster there are probably 1,000 samples that won’t prove valuable. If we agree to compensate the blockbusters, then we should compensate everyone who agrees to donate their tissue, and that’s neither feasible nor fair.” (6) Although Lack’s case set its own precedent, cases after having examined compensation for donation generally find the response is similar to that of the lottery factor. There are so many people who donate and have no idea the worth of their DNA.

The “lottery” chance that someone finds something you donated to be of monetary value us too rare to be able to compensate everyone who donates. The last relevant fact to be discussed is two scientific breakthroughs that Lacks’ cells lead to. The polio vaccine was first tested, retested, and perfected on these HeLa cells. Polio is a disease that paralyzes someone by attacking their central nervous system.

One hundred years ago, this disease was problematic because it was easily spread and they had no way to prevent it. Dr. Jonas Salk injected HeLa cells starting in 1950 with the polio disease because they were much more durable than previously used cells. His goal was to create a vaccine that would prevent the transference polio. This experiment, by 1952, led to a vaccine that humans could use that effectively protected against the polio virus. (7) These cells were vital in the creation of the vaccine because, without them, the cells would die before we even had a chance to see if the vaccine worked.

This is significant because it decreased the number of people who contracted and later died from the polio disease immensely. Not only did these cells help create a vaccine for the poliovirus, but many other viruses such as Human Papillomavirus (HPV) and other easily contracted diseases. The second contribution HeLa cells led to in science was their importance in early gene mapping. In the 1960s HeLa cells were being used to eventually create a map of the human genome.

They were fused with mouse cells. Since there was a mix of human and mouse cells, “...scientists could look at what proteins a cell did or didn’t produce and deduce which human gene they were produced by”. (8) Over time and many trials and errors, the human genome project was able to create a map of the human genome with this information.

Without these cells, we would not have been able to fuse cells with mouse cells because they would have died. This is significant because we are able to map genes in order to fix genetic mutations, change people’s genetic makeup even before birth, and anything else the discovery of the genetic map will lead to. Stakeholders There are many stakeholders in the story of Henrietta Lacks. These are people who are affected by the outcome in some manner.

The first main stakeholder was Henrietta Lacks herself. Her outcome of this situation was positive. She passed away after her cells were removed from her body without consent due to cervical cancer. Her surviving relatives explain that although she did not consent to this, she would have been happy that her cells have been used to help so many people.

Her daughter Deborah says, “I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you...But maybe I'll come back as some HeLa cells like my mother, that way we can do good together out there in the world.” (3) The entirety of the family knew their mother’s heart would be happy knowing she was still doing so much good for the world after her death. These scientific discoveries were made without her knowledge and with no compensation, but she did pass away before any of that could be sorted out.

The second stakeholder in this story is Deborah “Dale” lacks, Henrietta’s daughter. After her mother passed away, she endured years of systematic abuse at the hands of her family members that were brought into the house after her mother passed away. She realized her stake in this when she began to discover what her mother's cells have lead to in science and technology. In the book, she states “All this stuff I'm learning,' she said, 'it make me realize that I did have a mother, and all the tragedy she went through. It hurts but I wanna know more, just like I wanna know about my sister.

It make me feel closer to them, but I do miss them. I wish they were here." (3) She was negatively affected by this ethical question. After the years of abuse, she spent years uncovering the truth about where her mother’s cells have lead to, and more time trying to be compensated for it. Although her mom passed away, compensation could still be received by her surviving family, in this case Deborah.

The third stakeholder in this is Henrietta’s eldest son Lawrence Lacks. He was with his mom during her sickness and remembers a lot of it. He was negatively and positively affected by this. When talking about his mom, Lawrence states “I blacked it out of my mind because of the sadness and hurting."(3) His memories of her are tarnished because of the mistreatment he has felt from the scientific community regarding his mother's cells.

He was not compensated for any of the scientific breakthroughs his mother’s cells led to. On a positive note, he was extremely grateful that his mother could still be helping people even after her death. He said, "You know what I heard? I heard by the year 2050, babies will be injected with serum made from my mama's cells so they can live to eight hundred years old." He gave me a smile like, I bet your mama can't top that.

"They're going to get rid of disease," he said. "They're a miracle." (3) Although his family was unaware of their mother’s medical procedure and were not compensated for it, he found the success of her cells rewarding. Lastly, author Rebecca Skloot was a stakeholder in this story. She shed to light everything that occurred. Originally a non-stakeholder, Skloot's agreeance to write this book wrapped her into a world she did not know she asked for. Her interest in this story came early on, “As I worked my way through graduate school studying writing, I became fixated on the idea of someday telling Henrietta's story.

At one point I even called directory assistance in Baltimore looking for Henrietta's husband, David Lacks, but he wasn't listed.” (3) She was positively affected by this outcome because it furthered her research and she was compensated for the book that came out of it. Although Skloot had no stake in the removal of these cells, she had a stake in the result of them. Ethical Considerations This book arose many ethical considerations, specifically respect for persons and autonomy.

Respect for persons entails ensuring that you are treating people as people, not just a means to a goal or an end. The doctor treating Henrietta Lacks had no for respect for persons. In the book, it states “Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. “

These people were treated as objects, a means to a goal, in order to make scientific breakthroughs. Those patients were unaware of the contribution they were making to society, nor were they ever going to be compensated for it. The second ethical consideration is autonomy meaning “self-rule”.

This is a patient’s most basic right. No matter what the doctor thinks, the patient has complete say over anything and everything that happens to them while under a physician's care. When discussing the use of HeLa cells and Chester Southam's injection of them into already ill patients Skloot says, “He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else's malignant cells.” (3) Patients have the right to know, understand, and consent to anything entering or exiting their body. This doctor and Lacks’ disregarded autonomy when they decided to perform these procedures without the patient's consent.

Conclusions

The Immortal Life of Henrietta Lacks by Rebecca Skloot raises a key question: Is it ethical to use patients DNA to make scientific discoveries without their knowledge and continue to use it without notifying or compensating them? The relevant facts are that the doctor failed to get informed consent from the patient, the total monetary loss from Lacks’ family and gain for the medical industry is massive the previous and future precedents set by research similar show no indication of monetary compensation for patients, and the technology and advancements this discovery led to in medicine like the polio vaccine and others.

When considering it ethically we look at autonomy and respect for persons. Henrietta Lacks was continuously treated as a test subject and did not have self-rule over if that was permissible or not. Henrietta Lacks should have been informed of the procedure before it ever happened and either she or her family be compensated adequately for this discovery.

Did you like this example?

698

37