Saturday, July 21st, 2018

Celebrating Moral Immortality

Posted on October 24, 2017 in Perspectives
By USM Free Press

Cornelia Cone

Reflections on the “Descendants of Henrietta Lacks” bioethics lecture hosted at the University of Southern Maine’s Portland campus on Oct. 13, 2017

‘Individuals are not stable things, they are fleeting. Chromosomes too are shuffled into oblivion, like hands of cards soon after they are dealt. But the cards themselves survive the shuffling. The cards are the genes. The genes are not destroyed by crossing-over, they merely change partners and march on. Of course, they march on. That is their business. They are the replicators and we are their survival machines. When we have served our purpose we are cast aside. But genes are denizens of geological time: genes are forever.’

― Richard Dawkins, The Selfish Gene

Immortality is a word that I used to be able to say with such ease, instantly grasping the implied meaning but not pausing to consider the flexible utility of the concept. A recurring theme in fiction, culture, religion and even science, the word has a degree of familiarity but suddenly felt so incomprehensible as I was sitting in the Hannaford Lecture Hall on that unseasonably sunny Friday morning. The Immortal Life of Henrietta Lacks. The words rattled around in my head becoming more and more evasive with every attempt to wrap the grip of comprehension around them. What does it mean to be immortal? What is an immortal life? Is life not by definition mortal?

The human obsession with immortality can be traced back in literature. The Epic of Gilgamesh is one of the first documented literary works and primarily focuses on the quest of a hero seeking to become immortal. Another manifestation of our obsession with immortality is our invention of religion in as much as we endeavor to cast off our corporal ballast to transcend death. The belief in an afterlife is a fundamental tenet of most religions including Hinduism, Buddhism, Jainism, Sikhism, Christianity, Zoroastrianism, Islam, Judaism, and the Bahá’í Faith. Even my own, young children are obsessed with a creature that is colloquially know as the immortal jellyfish. Turritopsis dohrnii is a species of small, biologically immortal jellyfish found in the Mediterranean Sea and the waters of Japan. It is one of the few known cases of animals capable of reverting completely to a sexually immature, colonial stage after having reached sexual maturity as a solitary individual thus achieving immortality. In reflecting on my own life and the meaning thereof I have concluded that there are two primary mechanisms through which one can obtain immortality, one is through perpetuating one’s genes – a process so eloquently described by Richard Dawkins in the introductory quote. The another is through producing ideas with the potential to outlive oneself. Another idea explored by Richard Dawkins when he coined the term meme in reference to a unit of human cultural evolution analogous to the gene. In more cutting-edge science, researchers are now bridging the chasm between fiction and reality with developments in artificial intelligence and talk of being able to transfer the content of one’s mind from essentially the wetware of one’s brain to the hardware of a computer.

In those moments spent mauling over the nature and character of immortality the concept itself took on a peculiar plasticity. It could encompass so much as to fade into meaninglessness. It was then that I caught a glimpse of the writing in the notebook of the person sitting next to me. At the top of a lined page in neat, round script was the sentence: “Has this now become a race thing?” It was this sentence that instantaneously pulled me back from the abstract philosophical thinking that I so comfortably fall prey to and brought me face to face with a harsh reality. I grasped how quickly this story, which only moments ago seemed so fantastical to me, could be stripped of all nuance and humanity to become a story of literal black and white. A plot of white versus black. Even Rebecca Skloot obviates this pitfall. In an article for Smithsonian.com Rebecca mentions that Henrietta’s story and the fate of the HeLa cells are frequently cited as a depiction of racist, white scientist maliciously exploiting an underprivileged, black woman to bolster their careers and financially benefit Big Pharma. The real story is much less Machiavellian. Perpetuating such a narrative in our current political climate runs the risk of entrenching identity politics. I have a particular aversion to the type of identity politics that has gained a foothold in our society and, in my opinion, more often than not, served no other purpose than to make us acutely aware of our differences when it would most benefit us to highlight our common humanity. As a child who was born in the 1980s in Apartheid South Africa, I have a visceral understanding of what can spawn from such identity politics and how difficult it is to uproot even decades after the conclusion of truth and reconciliation commissions. Rebecca Skloot urges us to focus on how this story highlights human nature and the extent to which the scientific method is not infallible.

Since the early 1950s when Henrietta’s cells were harvested, much has changed in terms of how we navigate the ethical landscape of biomedical research and indeed any human model research. Much of biological research still hinges upon human tissue samples but scientists are now mandated to de-identify tissue samples. Although this decreases the risk of privacy violations such as the ones Henrietta and her family had to grapple with, it does increase the risk of cognitive dissonance in terms of viewing these cells as just another inanimate piece of lab equipment. Therefore, one of the take-home messages of this extraordinary story of perseverance and humanity is that there are human beings behind every biological sample used in the laboratory. The people behind those samples often have their own thoughts and feelings about what should happen to their tissues. The problem is that they are often left out of the conversation. Such violations also raise the question of informed consent and the extent to which a signature indeed signifies informed consent. I can only relate to this in terms of my own limited experiences with medical informed consent. The only times I had to sign an informed consent form with immediate consequences was during childbirth and in those situations, I honestly felt like there was a vast power differential between the medical staff and me. I cannot imagine what this must feel like if you have a third-grade education such as Henrietta’s husband had. Even if he had been presented with an informed consent to sign, which he was not, he surely would not have been in a position to truly understand the implications of what he was consenting to. As a society, we must do a better job at making sure that we advocate for those who lack information and power.

At the conclusion of the lecture, I did not leave with a sense of dread or a desire to rehash all the injustices of the past. I moved on that day with a sense of optimism. I view this story as a testament to our ability to recognize the flaws in our prior actions. The subsequent improvements in ethics support the extent to which we can improve and strive to act more morally. It inspires me that something as small as a cell taken from one person can have an impact on millions of people’s quality of life decades later. It is these ideas I hope will remain immortal alongside the HeLa cells.

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