Priscilla Wald, Professor of English and Women’s Studies at Duke University, presented her talk “Cells, Genes and Stories: HeLa and the Patenting of Life” as part of the CSSD project Precision Medicine: Ethics, Politics and Culture, followed by a discussion with the Precision Medicine working group in September.
A Particular Narrative of Human Origins
The discussion challenged the working group to consider the following: What does it mean to be human in the age of biotechnology? What defines being human? Is there a delineation, by which we are human on one side and non-human on the other?
Dr. Wald pushes these fundamentally humanistic questions to the forefront, and asks us to question why they matter. Why is our human-ness important to distinguish? In a thought-provoking account of the ethically-charged events surrounding the history of genetic engineering, she suggests a compelling human need to create a narrative about our origins – a narrative about the origin of humanity.
Among anthropologic creation myths and religious creation stories, scientific evolution is itself a particular narrative and attempt to understand ourselves and our place in this world. Modern genetics enables us to reach our arm further into our origin and kinship stories than before. To be part of some broader meaning is a potent need, and the methods we use to understand who we are as a species need careful consideration.
Social Fears and Biotechnology
These human questions are echoed in our concerns about new genetic technologies – we carry our social fears and taboos like a sack, passing it from new biotechnology to biotechnology. The exact set of questions which probe technology’s implications for our “humanity,” “being human,” and “sacred life” follow us. What is once unthinkably horrific at its advent – organ transplantation, IVF reproduction, and now genetic tinkering and artificial wombs – becomes medicalized and mundane with implementation. Without particularly negative technological repercussions, we forget and move the sack of concerns forward onto the next potential biotech invention.
Questions of patenting and intellectual ownership of living molecules have risen to prominence in the legal sphere during the last few decades, alongside the rise of biotechnology’s presence in science and our lives. Diamond v Chakrabarty (the U.S. Supreme Court ruling that the living nature of a genetically-modified organism is no bar to patentable subject matter) and Moore v Regents (a U.S. Supreme Court ruling that denied a property ownership right to one’s cells) both herald the shape of legal questions to come in this new age of biotech commercialization.
Race, Genetics, and Racism
If there is one pressing certainty that arose from the discourse, it is that we cannot venture further into this future of new genetic capabilities without understanding the deeply social implications of its effects. Race is a social category, not a biological one – yet genetics plays centrally into many racist narratives. Racism as much as race affects health outcomes. Humans are 99.9% identical, but it is the 0.1% that is most often explored, plumbed for its depths, and commercialized. 23&Me and similar genetic analysis organizations capitalize on this interest, rising to meet demand for an ethnographic narrative of our origins, but falling far short of providing real accuracy or insight for what individuals seek to discover about themselves.
The truth that may be most difficult to remember in the coming years of the Genetic Age is that we are not a sole product of our genetics. We are an amalgamation of our genetics, environment, society, and the complex interactions and reactions of those dimensions in epigenetics. Dr. Wald convincingly pushes us to return to questions about which particular narrative is being advanced about human origins, ‘us versus them’ kinship groups, and the motivations that underlie the narrative and why.
Science, Media, and the Markets
Social and institutional power structures determine who decides what is done with the data, and what stories are told about the data. Modern genetics is a form of biopolitics and power. When technology is controlled by capitalism, and when it is for commercial use or entertainment, who will pay for the technology becomes a defining question.
Above all, this discussion surfaced a highly persuasive case for cross-collaborations of the humanities and science, most especially in the communication of genetics research to the public – a conclusion that affirms this working group’s essential purpose and need. Linguistics, English, Philosophy, and their sister-humanities disciplines provide the insight and expertise on the medium by which all information is mediated and communicated: language. It is a medium that can be both uplifting and beautified, or subverted and yoked for alternate purposes. In communicating science to the media and public, we share the burden of responsibility for ensuring an accurate education.
Contributed by Jade Tan