In a recent article at LifeNews, “Possible Treatment for Down Syndrome Raises Ethics Questions,” author Effie Caldarola raises the ethical issue of treating those with Down Syndrome with a new drug under development by Dr. Alberto Costa. The new drug promises to stimulate and normalize growth in the Hippocampus of the brain, leading to improved cognitive function, and presumably enhanced academic and vocational performance.
The issue at hand is whether or not such medical intervention is an assault on the fundamental, ontological reality and identity of the individual. For some, such an intervention represents a devaluation of the individual as they are constituted by their nuclear chromosomal configuration and subsequent developmental patterning.
It is a delicate question, and deserves a respectful hearing.
I write my rejoinder to Caldarola as the father of a twelve year-old son who was diagnosed at age five with autism, ADD, and a few other neurological impairments; so it is not without complete understanding that I see both sides of the issue.
Let us consider Joseph’s autism and the ethical/moral demands it places on us as parents, and before that what the ethical/moral demands are on any parents.
All parents have a moral obligation to raise their children to be as completely self-sufficient and functional in adulthood as they can be. We are our children’s launch pad and mission control center in life. That process involves a substantial number of years spent in school learning fundamental academics, problem-solving skills, vocational skills, life skills, and social skills. The best and brightest among us struggle in one or more of the areas along the way. Through it all, parents begin in a very directive role and graduate to being mentors when their children reach adulthood.
The learning that takes place for the child is thought to occur in the classroom, on the basketball court, etc. In truth, it does not.
Learning is a neurological process that takes place in the brain. That brain relies on multiple sensory inputs resulting in the stimulation of new neural cells being generated, and new connections being made between new and existing neurons. We take that brain to the classroom, the speech therapist, the occupational therapist, the physical therapist, and the psychological therapist for very selected and targeted interventions meant to effect the greatest possible degree of change in the child with autism or Down Syndrome.
We do so because we have an obligation to do so. It would be criminal negligence to ignore the normal needs of the healthiest child, and all the more if we did absolutely nothing for the special needs child. All of our interventions in school and in therapy are aimed at stimulating growth and development in a brain that has some serious flaws in the normal unfolding of the genetic program.
From this neurological vantage point we now consider what it is that Dr. Costa is attempting, and what it is that folks find objectionable about it.
Dr. Costa is trying to aid the process of neurological development that takes place in school and in the various therapies. His medical approach, absent any serious side-effects, would prepare the neurological environment, fertilizing the ground as it were, for the interventions of the therapists. Such fertilization is intended to maximize the yield of those educators and therapists who plant and cultivate the seeds.
What, then, can be so objectionable about that?
Joseph’s autism has sculpted him, yet it doesn’t entirely define him. Being a scientist, I have approached Joseph’s diagnoses from the perspective of looking at what in his neurological environment is preventing him from attaining that knowledge and those skills that will help him to function as an independent adult long after my wife and I are gone.
Do we want Joseph to only become “functional enough” and then leave him looking sufficiently autistic? No, of course not. We want him to be all that he is capable of becoming, given the brain with which God has blessed him. He will never not have autism. He will forever retain certain of the traits that define autism. However, we want him to have as many options in life as possible.
This isn’t because we reject his autism. It’s because his autism ought not limit his options if there is anything we can do about it.
Joseph’s great dignity does not come from having autism. It comes from being a child of a loving God, entrusted to a mother and father who love him simply as their son. It matters not how he is neurologically configured. We don’t love him any more or less than we love his sisters. We love him simply because he is our son, and that love compels us to seek the very best for him in life.
Parents of those with Down Syndrome are no different. However, some have come to define their child by the child’s developmental and neurological configuration, and not by the more metaphysical realities. Like Joseph, high academic achievement in the child with Down Syndrome will never ameliorate their underlying physical reality.
What it can do is give that child a different kind of laughter and joy.