Genetic sequencing is already changing the way we see ourselves. In February, the FDA announced approval for commercial “consumer genetics” company 23andMe to market a test for Bloom Syndrome. Whole genome sequencing is becoming faster and cheaper. But what might we do with this knowledge and how will it alter both society and us as individuals? Novel The Generation explores these questions.
Like the rest of her generation, the novel’s female protagonist, Freya, has her genome sequenced shortly after birth. Amongst other things, the results predicted early-onset Parkinson’s disease. She has been told to expect her symptoms to manifest when she reaches thirty or thirty-one, and has regular scans to track changes in her brain. We first meet Freya on the evening of her twenty-ninth birthday, finding her understandably subdued:
“They say I should really start to see the symptoms manifest themselves in the next year or so. I won’t just be clumsy, the drugs won’t be enough anymore and they won’t be able to hide it. I’m having another brain scan next week. I’m terrified.”
One theme of The Generation looks at whether our belief in a diagnosis could influence how we physically respond to it. Could a nocebo-type effect – an “anti-placebo” – actually induce symptoms?
It’s already been well-documented by research that the nocebo effect is real. Simply warning someone that a needle “may sting” can actually cause such pain to become a reality for the patient.
Researchers at the Technical University of Munich in Germany published a comprehensive report of the nocebo effect, examining 31 empirical studies. They concluded that the effect is common and ought to be taken into consideration by healthcare professionals on an everyday basis. One of the studies they analyzed looked at 50 people with chronic back pain, who were given a flexibility test. Half were told beforehand that the test might cause some pain, while the others were not. Many more patients in the first group claimed that the flexibility test did actually cause them pain.
As we undoubtedly discover more about our individual susceptibility to disease, such findings demonstrate that the psychological effects of that knowledge are likely to have repercussions. Medical professionals will need to carefully handle their patients’ preconceptions and fears, as well as their own.
Indeed, could medical professionals also be influenced by such predictions?
Later in the novel, Freya describes her most recent scan:
The neurologist had said he could see no marked worsening since the last scan, which had come as a pleasant surprise. Had she been having migraines? Any problems with coordination, digit or limb control? He had looked confused as he peered at the screen. Freya had replied affirmatively and he then looked perceptibly relieved. When I’m tired, she had said, at the end of a hard week at work, or if I’ve been to the gym and not eaten properly. He had nodded and tapped some notes into the computer. Well, that’s to be expected, he had said.
Do we – and more specifically, medical professionals – only see what we expect to see? You only have to take a look at some of the most popular optical illusions to begin to accept that this may be a possibility.
The “checker shadow illusion” is an image that tricks our brains into thinking that squares in the “shadow” of the cylinder (B) are darker than those outside it (A). In reality, they are exactly the same color.
The creator of the illusion Edward H. Adelson, Professor of Vision Science at MIT in 1995, explains why our reaction to the image says a lot about our brain’s desire to find meaning:
“As with many so-called illusions, this effect really demonstrates the success rather than the failure of the visual system. The visual system is not very good at being a physical light meter, but that is not its purpose. The important task is to break the image information down into meaningful components, and thereby perceive the nature of the objects in view.”
The Generation envisages a near-future world in which all manner of medical issues and character traits – criminality, sexuality, academic ability – are defined at birth. And perhaps this may one day be feasible. Not only is the field of genetics on the road to this possibility, but understanding more about neurogenetics and neuroscience may expand the limits of our current understanding of the brain.
A recent review of brain imaging studies, published in Neuron, highlights the ways in which an increasing range of traits and susceptibilities can be predicted by MRIs and other neuroimaging techniques. The authors suggest that neuromarkers may offer “opportunities to personalize educational and clinical practices that lead to better outcomes for people”.
Despite the seriousness of the situation, Freya never tired of seeing her brain appear before her, first in two dimensions and then in three, digitally overlaid with fluorescent colours so that it ended up looking like something that belonged on the wall of a nightclub rather than inside her head. It always looked so strange, so otherworldly in its folds and holes, like the topography of a long-lost land. She had nothing to compare it to though, not really. Each brain is different, her neurologist had told her, which initiated the spark of a thousand questions she had wanted to ask him but had not, afraid to break the silence of the room. Hers, apparently, was just too different. Different enough that it would be her end.
Could it be, as one character muses, that “no matter how advanced modern science becomes, no matter how deeply our genes and our brains can be probed, no one can ever discover the subtleties of your character, the element of your spirit that makes you you.”?
The questions I raise in The Generation essentially relate to how far science can take us in our understanding of ourselves and our identity. I’m sure that we will soon begin to see answers to that question emerge.
The Generation is available now from Amazon, Kobo, NOOK and Google Play.
References
FDA News Release (February 19, 2015). FDA permits marketing of first direct-to-consumer genetic carrier test for Bloom syndrome . Accessed online 7 March, 2015.
Gabrieli, J., Ghosh, S., & Whitfield-Gabrieli, S. (2015). Prediction as a Humanitarian and Pragmatic Contribution from Human Cognitive Neuroscience Neuron, 85 (1), 11-26 DOI: 10.1016/j.neuron.2014.10.047
Häuser W, Hansen E, & Enck P (2012). Nocebo phenomena in medicine: their relevance in everyday clinical practice. Deutsches Arzteblatt international, 109 (26), 459-65 PMID: 22833756
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