It is compulsory for expectant mothers to have their unborn child genetically screened for disabilities or traits considered to be a burden to society. If a genetic “defect” is found, termination is mandatory. Those who refuse to comply face court orders.
This scenario is still science fiction, but for how long?
The subject is tackled in James Rushbrooke’s excellent play, Tomcat, which is currently running at Southwark Playhouse in London.
Twelve-year-old Jessie (Eleanor Worthington Cox) is the protagonist of the play. She is the last human carrying the genetic marker for psychopathy and has been the subject of a research project for ten years. She lives in captivity and is observed by a team of doctors and scientists who want to understand the biological basis of psychopathy. The researchers believe that it is not possible for the environment to save her from her genetic destiny.
Deleting diversity
Rushbrooke powerfully portrays a near future in which society has traded freedom and respect for humanity for a “healthy” populace, free of disability and disorders. The play raises the question: if we had the technology to get rid of the traits that cause a burden to society, should we use it?
But what counts as an illness or a disability? And is there a value in conserving disability?
We already have pre-implantation genetic diagnosis that, in the UK, can be used to screen for thalassemia, cystic fibrosis, and other genetic disorders. It can also be used to screen for traits traditionally considered a disability, such as deafness.
More recently, a maternal blood test called non-invasive prenatal diagnosis was developed to test for single gene disorders and is being implemented in the UK. And CRISPR-Cas9 genome editing techniques may, one day, give clinicians the tools to edit embryos. A group at the Francis Crick Institute has already applied to the regulatory Human Fertilisation and Embryology Authority for a licence to use the technology in human embryos in the lab, but clinical applications are still a long way off.
We also have other kinds of technologies that are discussed in the play. For example, brain imaging techniques, such as fMRI (which measures brain activity through changes to blood flow) are starting to reveal the biological basis for conditions such as psychopathy and body identity integrity disorder by showing the differences in brain scans of people with these conditions.
Brain imaging has been used in US courts as evidence for psychopathy. In 2008, fMRI evidence was used, for the first time in a US court, to decide the fate of Brian Dugan, a man accused of murdering two children and a woman. An expert witness used evidence from fMRI brain scans (but not the scans themselves) to argue that Dugan should be given life in prison instead of the death penalty because of his condition. The defence argued that psychopathy made him do what he did, as he lacked empathy and was only partially responsible for his acts. But the prosecution argued that fMRI evidence should be used as aggravating circumstances, as psychopathy is not a condition that can be cured. Confining Dugan to a life in prison would only impose a burden on society and could not rehabilitate him, they argued. In any case Dugan was convicted and sentenced to death (later commuted to life).
More recent applications of brain imaging as “insanity defense” have prompted discussions of free will and responsibility of action. Court disputes around chronic pain cases, which are traditionally been a hot subject because of the suspicion of malingering on the plaintiffs, are also being revolutionised with the introduction of brain imaging as proof of evidence of the conditions. The risk in the use of these technologies as a evidence of a biological underlying cause is a reduction of the individual to a brain or genes. It’s all nature, no nurture.
A safe society, but at what cost?
In Tomcat, Jessie echoes some of the arguments made by people with autism spectrum disorders who reject the label of disability and want to be considered “neurodiverse” as their condition determines their identity.
These issues are timely. Disability rights activists have started to question the screening tests which would lead to a future free of illnesses and disabilities. Would we relinquish our value of personal freedom for a “healthy” society? What would we lose of our humanity in such a world? Are we slipping towards eugenics with a new wave of biological determinism based on genes and brain scans?
Tomcat prompts reflections of how we think about disability, illness, and identity. As Jessie says: “I don’t want to be me if I can’t be me.” Isn’t this the case for all of us?