Emma Nance probes the entanglement of genetics, biology and bioethics using an accumulative genetico-literary methodology
The Puzzle
There’s a lot that I have discovered about my family’s genetic code over the past 25 years. I know about my mother’s gene that predisposes her towards breast cancer, a gene that jumps down her family tree, but not to me. I know that at 5’2, I will never be as tall as my mother and father, who are 5’10 and 6’2, respectively, and will never have to play a Mendelian tic-tac-toe to figure out where I inherited my (lack of) height from. But I also know, as a child adopted from China to parents in the United States, there are many mysteries in my genetic code that I’ll never solve.
Nature versus nurture: a question any adopted child is squirmingly familiar with. How much of identity is shaped by genetics (nature) and how much is defined by environment (nurture)? It is impossible to confidently separate personality from the myriad of lasting environmental impressions that are deeply interwoven into the psyche (Jang et al., 1996). In the nature versus nurture debate, with the nature variable unknowable, adopted children are often taken as tabula rasa and scrutinised for the effects of nurture (Locke, 1752). For some, the science of genetics may represent a comforting certainty, an ability to sketch idiosyncrasy, belonging, and identity, onto familial, social, and cultural canvasses (Pinker, 2003). For others, however, it may shed painful light on deeply-buried genetic secrets leading to uneasy conclusions about future health outcomes (ABC v St George’s Healthcare NHS Trust, 2017).
Genetics can be both constructive and destructive, rewarding and debilitating. I don’t know if the answers to my deeply held genetic questions would be empowering or not. Who are my biological parents? Do they look like me? What is my genetic history? I know these questions, which many people take for granted, may never be answered for me. The rate of Chinese adoptees finding their birth parents is roughly five percent (Jay et al., 2022). As an adopted friend of mine once remarked, the first time we will see a blood relative of ours will be if we give birth to them. At least then we might be able to give our future children some already-matched pieces of our genetic puzzles.
The Project
To frame the questions I had about my genetic puzzle and ancestry, I started unconsciously accumulating books on genetics and biology, first through fortuitous Christmas presents and then through more concerted efforts. I only realised later that I had conducted a small-scale literature review on genetics, adoption, and on the perennial nature-versus-nature debate. In conducting this ad hoc literature review, I aimed to capture some of the elusive pieces of my identity within the framework and certainty of genetics.
I started collecting pieces like Siddhartha Mukherjee’s book, The Gene: An Intimate History (Thorndike Press, 2016). As Mukherjee writes: “This book is the story of the birth, growth, and future of one of the most powerful and dangerous ideas in the history of science: the ‘gene’, the fundamental unit of heredity, and the basic unit of all biological information” (9). Yet, the more books I collected on genetics — for instance, Mark Ridley’s The Cooperative Gene (2001), Walter Isaacson’s The Code Breaker (2021), and Jonathan Slack’s Genes: A Very Short Introduction (2014) — the more questions I had.
I realised through collecting these books on genetics how uncertain the field is and how susceptible genetics is to political ideology. Though genetics famously traces its way back to 19th century Gregor Mendel and his pea plants (Clarke, 2022), the discipline has had a troubled past. Historically, it has held dangerous dalliances with colonialism, Nazis, and eugenics (Blacker, 1952), affairs which modern genetics is still struggling to distance itself from.
As I explored the history of genetics, I realised I also wanted to look at our present understanding, and what we ought to do with this information. Now we have more tools to understand where we came from, how should this shape our current world structure? For example, given we understand more about the human genome and that direct-to-consumer genetic testing services like 23andMe are commercially available (Lee, 2015), how will this change our perception of ourselves? Is it possible to learn from past mistakes and to create a future that is kinder, more just, and more equal?
The Pivot
These are central questions in bioethics, a discipline that studies the ethical, legal, and social issues which arise in biomedicine. Genetics and bioethics fit hand-in-glove: science innovates and bioethics reflects – hopefully simultaneously. Scientific advancements and breakthroughs do not exist in a vacuum. Their effects on local and global societies should be examined and justified in real-time (Kerasidou and Parker, 2014).
I expanded my amateur review to include books which reckon with the dark history of genetics and more broadly with medical research, with “scientific advancement” often being a thinly veiled reference to horrifying medical experimentation. Books such as Kate Moore’s The Radium Girls (2017), Rebecca Skloot’s The Immortal Life of Henrietta Lacks (2010), Alondra Nelson’s The Social Life of DNA (2016), and Angela Saini’s Superior: The Return of Race Science (2019), all reckon with the detrimental physical, social, and psychological effects of conducting science in the absence of bioethical inquiry. These books also reassert my hypothesis, my central dogma, that bioethics should be integrated at all levels of science.
From this expansion, my revised aim with this review is to re-position the humanities within science. For me, this process includes personal narrative reflections on bioethics, attending to narratives such as Atul Gawande’s Being Mortal: Medicine and What Matters in the End (2015), Paul Kalanithi’s When Breath Becomes Air (2016), and Oliver Sack’s An Anthropologist on Mars (1995).These books, written by doctors, express the value of humanising medicine, a practice which often seems cold, clinical, and impersonal. While keeping professional distance is one thing, falsely cutting out the vital role that society, ethics, and humanities play within medical practice, I suggest, is disingenuous.
The Personal
I too have believed that to be taken seriously academically I had to edit out all personal information and leave only the facts. However, as Gawande reflects in Being Mortal, his career as a doctor did not help him through the pain of watching his father die. It was his personal narrative, his family history and connections, and his introspective reflections that helped him process his grief. I now think it is important to contextualise genetics and bioethics in the personal, perhaps in the painful, which ultimately leads to a more nuanced and fulfilling understanding of science, society, and self.
Therefore, keeping with the need to do personal, I have also included in this review my medical ethics textbooks and fiction books. Some of these include Tony Hope’s Medical Ethics: A Very Short Introduction (2004), Stephen Holland’s Bioethics: A Philosophical Introduction (2003), Alastair Campbell’s Bioethics: The Basics (2013), among others. Medical ethics is a fascinating facet of the bioethics discipline, one which explicitly looks at the doctor-patient relationship, research ethics, and euthanasia. This area delves into the most painful, personal, and fulfilling questions of being human. As Tony Hope writes: “Medical ethics will appeal to many temperaments: to the thinker and to the doer; to the philosopher and to the woman or man of action… Modern medical science creates new moral choices, and challenges traditional views that we have of ourselves” (2004: 1-2).
I have also included fiction books in this review because fiction often predates scientific reality by several years, even decades. Thus my lit review includes Aldous Huxley’s Brave New World (1971), Kazuo Ishiguro’s Never Let Me Go (2010), and Jeanette Winterson’s Frankissstein (2019). All three reflect on the intersection of science and ethics, genetics and bioethics, and ruminate on the consequences of neglecting bioethics during genetic innovation.
Finally, as bioethics delves into many interrelated strands, it was difficult to form exclusion criteria for this review but eventually I had to draw the boundary. I have excluded pieces on illness narratives, pandemic ethics, artificial intelligence, popular neuroscience, and musings on the future. My apologies to Virginia Woolf, Kathleen Jamie, John Berger, Alice Munro, Charlotte Perkins Gilman, Tony Kushner, Albert Camus, Yuval Noah Harari, Ursula Le Guin, and Neal Stephenson, all of whom were almost included in this review.
The Potential
I hope this review fuses together the strands of genetics and bioethics and perhaps help someone else who may be struggling with fundamental questions like how identity is formed, what it means to be human, and how the future could be shaped to be more equitable. Increasingly, people are recognising the value of addressing genetics and bioethics simultaneously; the formerly rigid walls between the STEM and humanities disciplines are dissolving. In closing, while this collection will not end long-standing debates, such as the nature versus nurture argument, I hope this book collection and this essay have revealed a more interesting discourse on how we can apply lessons from the past on our current environment, ultimately taking a more active and informed approach towards our future.
About the Author
Emma Nance is a PhD student on the Wellcome Trust funded programme One Health Models of Disease: Science, Ethics, and Society at Edinburgh University. She is from New York but has studied for several years in Scotland, first completing an undergraduate degree in English Literature (MA Hons) in 2019 and completing an LLM in Medical Law and Ethics in 2020. Emma’s current work examines the bioethical implications of human and non-human biosurveillance with a view towards integrating and updating the policies under a One Health and global justice framework. You can follow Emma on Twitter @emmaLNance.
References
ABC v St George’s Healthcare NHS Trust [2017] EWCA Civ 336
Blacker, Charles P. 1952. Eugenics: Galton and after. London: Duckworth.
Clarke, Joanna. 2022. Mendel’s Legacy in Modern Genetics. PLoS Biology 20(7), p. e3001760–e3001760.
Campbell, Alastair V. 2013. Bioethics: The Basics. London: Routledge.
Gawande, Atul. 2015. Being Mortal: Illness, Medicine and What Matters in the End. London: Profile Books.
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Hope, R. A. 2004. Medical Ethics: a Very Short Introduction. Oxford: Oxford University Press.
Huxley, Aldous, and Leonard Rosomon. 1971. Brave New World / Aldous Huxley; with Drawings by Leonard Rosomon. London: The Folio Society.
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Lee, Stephanie M. 2015. “Anne Wojcicki’s quest to put people in charge of their own health.” San Francisco Chronicle, Feb. Accessed 13 Jul 2023.
Moore, Kate. 2017. The Radium Girls: The Dark Story of America’s Shining Women. Naperville, Illinois: Sourcebooks, Inc.
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Saini, Angela. 2019. Superior: the Return of Race Science. London: 4th Estate.
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Winterson, Jeanette, and Mary Wollstonecraft Shelley. 2019. Frankissstein: a Love Story. London: Jonathan Cape.
