Medical advances have provided the possibility to screen for a variety of conditions during pregnancy. This can offer parents the opportunity to prepare to raise a child with those conditions, or to terminate the pregnancy if they determine that there is reason to avoid bringing a child into the world with the condition. The ethical evaluation of the decision to terminate a pregnancy on the grounds of the disability status of the potential child is a fraught issue. There is further context for the discussion of this issue now that gene editing in humans is making leaps forward – scientists in the US have begun using CRISPR to edit human sperm cells.
Antenatal screening is not perfect; largely the tests provide a likelihood that the fetus will have some condition. The screenings can detect physical anomalies such as spina bifida, or indicate that the fetus is at risk for inherited disorders like sickle cell anemia and thalassaemia. They also can find the chance of chromosomal abnormalities such as Down’s, Edwards’ or Patau’s syndromes. CRISPR editing of genes is still in its early stages, but the groundwork is being laid to allow scientists to edit out undesired conditions.
Some argue that to alter or terminate the fetus because it will have a condition like Down’s syndrome is morally wrong. When you opt for parenthood, they can argue, you are taking on a myriad of possible living conditions for your child. If, say, you opt out of having a child with Down’s syndrome because you of some perceived cognitive deficit involved in the condition, then what sort of parent would you be if you have a child without Down’s syndrome that has an accident or disease later in life that causes a similar deficit to develop?
Others argue that opting to have a child without disorders is a permissible choice. After all, they contend, it intuitively is morally permissible, if not obligatory, to behave in such a way to raise the likelihood that your child isn’t born with conditions that involve deficits: for example, by not drinking or doing drugs while pregnant.
What is the difference between advocating for behaviors that reduce the likelihood of certain conditions, terminating a pregnancy because the fetus has a high likelihood of having a certain condition, and editing genes of fetuses so that they don’t have those conditions?
A great deal depends on how we are conceiving of the value of individuals with particular conditions.
One significant concern in taking action to reduce the population of individuals with particular disabilities or divergences is that it expresses prejudice against those with the condition. The selection expresses a mistaken judgment about their quality of life. For many conditions, both physical and cognitive, there is growing evidence that the stigmatization of the conditions outrun the lived experience of the individuals – with self-reported quality of life reports of those living with disability not significantly differing from individuals without disabilities.
Others are concerned with the practical implications of many people making selections for children without some conditions. It is impractical to imagine that widespread use of such selection would completely eradicate the conditions (because of differing choices of parents, imperfect medicine, etc.). Therefore one worry is that the individuals with conditions in the hypothetical society where widespread selection takes place will be further stigmatized, invisible, and have fewer resources.
Disorders and standards of health are, to a significant extent, socially constructed. Infrastructure, social practices surrounding recreation and employment, and laws themselves get designed around what works for many or most people. This makes life harder for people who function differently; the socially and physically constructed world isn’t shaped to work with them. Two groups that exemplify this point well are the neurodivergent and those with different physical abilities.
Neurodivergent people have neurological variations outside the cognitive norm. Conditions include ADHD, autism, dyslexia, and other developmental disorders, cognitive disabilities and psychiatric disabilities, and potentially a host of other experiences. Behaviors and experiences associated with these conditions are socially marginalized because of their divergence from what society perceives as normal.
In the last decades, the physical world of the US has been altered to be more inclusive to those with different physical abilities. Whether you can hear or reach over 4 ft high or climb stairs or hold objects steadily or lift 20lbs should not preclude the spaces you access or the opportunities you have in life.
The disabled body is created largely through a lack of accommodation, not an intrinsic worthwhileness of particular lives. Disabilities can be understood as authentic forms of human diversity, living lives that may be different from a perceived normal, but not less valuable. Different perspectives, abilities, and ways of approaching the world add to the value of society. The diversity of human experiences enhances relationships and promotes progress in multiple spheres, helping address more questions facing humanity because more minds could be at work, and adding to wealth of experience in technology and arts.
Frank Stephens, an actor with Down’s Syndrome, is an active advocate for disability rights and spoke in front of Congress about the rich quality of life possible with his condition and the contribution of neurodivergent people to our society. The Autism Self Advocacy Network, along with other groups, argue that attempting to find a “cure” to autism is misguided, that autism is a natural occurrence of a neurological variant.
As a society, we need to be invested in plastic modes of engagement in recreation, employment, and schooling that support diverse bodies and minds actively socializing. People experiencing life with disorders and conditions should be the authorities on their quality of life, and inform parenting choices and the direction of scientific experimentation. In a society that supports the experiences and lives of people with autism and allistic people equally, for instance, the question of whether to select for an allistic child may become a similar ethical question to the selection for eye color.