by Joanna Latimer
Describing how global genetic testing is being manipulated and marketed, Stuart Hogarth at a recent workshop in Paris pointed to how the tests produced are relatively cheap and have potential to be bought by trillions of people. This potential is already beginning to be realised by companies such as 23AndME and by Non-Invasive Pregnancy Screening Technologies (NIPT), such as that provided by Cells4life. For example, Heather Strange helps demonstrate how NIPT sequences the foetal genome through extracting samples of foetal DNA from the mother’s blood with the potential for sexing the unborn child, and revealing possible chromosomal and genetic anomalies, such as Down Syndrome.
So what’s the problem? Surely such products, like many of the apps available to us nowadays, help to satisfy consumer choice – with the huge profits for the Silicone Valley Grandees funding and promoting them only likely if there is a demand for such tests? Well first one has to say that not only do these genetic tests not detect the severity or effects of any anomalies – nor address the complexity of how genes get expressed over time through body-self-world interactions. Relatedly, in allowing people to by-pass the clinic, there is a worrying absence of thresholds between us and this kind of genetic information being created about us.
Why might this absence of thresholds matter? In Rolland Munro’s and Dave Beer’s previous blog posts we can see the entanglements in which people are increasingly caught as machines talk to machines. What is becoming critical within this online universe are the algorithms that act as triggers between us and suppliers – so any of us might get an advert from say a diagnostic testing outfit landing on our Facebook page. Often described as ‘thresholds’ in geek talk, I want to emphasise how these triggers are not thresholds in any anthropological sense. Thresholds get constituted by institutional arrangements and discursive devices that, in Victor Turner’s analysis hold someone or something in the ‘betwixt and between’. For example, access to diagnostic categories and resources in health care organizations, such as beds and treatments, are marked by endless moments of the classification and reclassification of patients back and forth between urgent, acute, or emergency on the one side and non-urgent, routine or chronic.
Any threshold of this sort becomes an intense site of negotiation and interpretation, and is characterised by what Zygmunt Bauman describes as interpreters, not just legislators. In my book The Gene, the Clinic and the Family, for instance, I showed how certain parents are now immersed in the epistemological processes of medical genetics. These entanglements with the clinic create a threshold in which the matter of assessment of the risk of probability of reproducing a child with genetically induced problems is understood to be unbelievably complex, rarely left to a single diagnostic test. Genetic test results create uncertainty, and so are assembled and juxtaposed with other evidence, including the gaze of the clinicians, to provide a portrait of the family and facilitate assessment of the significance of the genotype-phenotype relation they are seeing/saying. Specifically, the parents become ‘impressed’ by the world of information as a kind of Sacra and are thus installed as responsible for managing the riskiness of reproduction and if necessary for the (re)formation of the family down the line.
Within the book I began to imagine a future in which people would routinely have their genetic profiles checked – certainly prior to their procreating in order to make sure that their genomes were compatible with their prospective partner; and further that they would reproduce babies that would look good on them. This future imaginary is now being publically discussed as an immanent possibility – for example on Radio Four’s Start the Week I heard a Dr Siddhartha Mukherjee, an oncologist, talking about his new book The Gene and his own genealogy, and how in the future genome sequencing means that eugenics could and should be a normal part of how we choose to reproduce. His account was grounded in the notion that it would help us prevent suffering.
What I don’t think comes into view in the translation of the diagnostic testing of genomes into a discourse of heroic medicine, is how the global genetic testing market operates to bypass the clinic and speak direct to the customer. The double helix of the digital and the genomic is giving us ever-increasing metric information about ourselves, alongside the erosion of the clinic as a site of power and a shrinking of thresholds of interpretation. The ‘filtering’ of information and its ’translation’ into knowledge and/or understanding is being pushed back into individual minds, minds already subjected and entangled by the imminent and pervasive mechanisms of ‘the trigger’. We need to think through how the gods of choice are aligning up with digital cultures of consumption in the proliferating market of available diagnostic tests (to be bought direct) in ways that bypass the clinic. So when we are talking about NIPT, and the analysis of foetal DNA in the absence of therapeutic solutions (except for termination of pregnancy) decisions over whether to let the child live or make the foetus die raise profound questions over the absence of thresholds, as spaces that slow things down, create a holding pen and distribute interpretation and translation, and the taking of a decision.
Joanna Latimer, University of York.