Disability Will Never Be Immoral
The summer's "ice bucket challenge" has brought an extraordinary amount of attention to amyotrophic lateral sclerosis (ALS), a neurodegenerative disease impacting nerve cells in the brain and spinal cord. What you may not know about ALS is that it is only very rarely inherited, at least through any determined genetic mechanism. It is currently thought that "only about 5% of all patients with ALS will have a genetic change" causing the disease. Genetic testing is available for patients who have both symptoms and a family history, but it is rarely recommended.
This does not mean that genetic testing for ALS will not be marketed to people concerned for their health, or for that of their children, especially given the peak in interest at this time. Genetic screening for the "breast cancer genes" BRCA1 and BRCA2 has become widespread, and prenatal genetic tests to detect them are also on the rise. But as with ALS, the vast majority of breast cancer cases have nothing to do with inherited genes.
Of course, there are plenty of traits that are more clearly and commonly linked to genetic variations. Prenatal genetic testing for such conditions significantly raises the stakes of what can be done with that knowledge.
All parents-to-be must be able to make their own choices about their ability to raise any child, but unfortunately too many are presented with a prenatal diagnosis without accompanying information about what it actually means for their child or their family. The slick marketing of prenatal genetic testing has sparked concern about its propensity to dehumanize conditions while normalizing specific responses. This is certainly true for the most frequent chromosomal disorder, Down syndrome, which has also been a prevalent media subject this summer thanks to a couple of strange and sad happenings.
The most sensational story has been that of Baby Gammy, the boy with Down syndrome who was left with his Thai surrogate mother when his Australian parents returned home with only his twin sister, who did not have that extra chromosome. People around the world were outraged as the (still contentious) details emerged: that the parents had asked the birth mother to have an illegal abortion, that they then left Gammy in Thailand when they believed he had mere days to live, that the father had previously been convicted for 22 child sex offenses. The more recent coverage of a California couple who had a similar experience further highlights the prevalence of people unwilling to care for a child with Down syndrome, not to mention the problems that can arise when competing values clash in cases of third-party reproduction.
In a separate incident, Richard Dawkins made a tone-deaf comment on Twitter last week in response to a woman's musings about the ethical dilemma she would personally face if she was pregnant with a child with Down syndrome. His advice: "Abort it and try again. It would be immoral to bring it into the world if you have the choice."
Dawkins has since gone on the defensive and insists that his words have been taken out of context. But these remarks swell a trove of other examples of his intolerance. And his choice of words in this comment cut to the heart of the problem with prenatal genetic testing: What happens when the technology no longer enables a woman's freedom to choose, but turns into a societal pressure to have the most "normal" child possible? What happens when only certain lives are considered morally acceptable?
In response to Dawkins' statement, the UK Down's Syndrome Association put out a statement that highlights the risks of intolerance for differing ways of being, and points to a more thoughtful way forward:
People with Down's syndrome can and do live full and rewarding lives, they also make a valuable contribution to our society. At the Down's Syndrome Association, we do not believe Down's syndrome in itself should be a reason for termination, however, we realise that families must make their own choice. The DSA strives to ensure that all prospective parents are given accurate and up to date information about the condition and what life might be like today for someone with Down's syndrome.
Dawkins is not the only prominent figure to have publicly displayed prejudice about Down syndrome. In a recent piece in The Guardian, Ian Birrell recalled bioethics professor John Harris telling him on TV that it is "morally wrong" for parents to choose a child with a disability if science offers an alternative. Birrell countered:
Those preaching this new eugenics conflate health and disability, harm and difference. They dismiss how diversity enriches the world, reject complex issues of choice, ignore implications of inferiority…. This is not to quibble with any woman's sacred right to choose, merely to highlight the casual acceptance that disabled lives are second-rate and can be discarded as too burdensome.
Structural discrimination toward people with disabilities is still common. But the outrage over Baby Gammy's abandonment and Dawkins' comment provides a spark of hope. Apparently many people cherish human diversity, and reject the view that Down syndrome is something to be weeded out just because we now have a technology that could enable us to do so.
Previously on Biopolitical Times: