…. “we will need to obtain blood samples from some members of your extended family to allow DNA testing.”….I naively asked why the genetic data was required. Waving a dismissive hand toward our daughter, who until this point had tried her darndest to win the doctor’s attention with coy smiles and giggles, this gifted physician who knew so much about the disease abruptly replied, “We want to ensure you don’t have another one of those!”
I belong to a very ordinary Australian family, albeit with two obvious differences. First, compared with the stereotypical sports-loving, tough Aussie, some of us are quite weak and physically frail, thanks to a mutant gene. Second, my family has resisted the secularism that is a dominant feature of modern Australian life.
I believe it is no accident that we preserved our Christian profession. One reason ill-mannered New Atheist attitudes gained little traction among us is that Christian theism provides a secure footing for our family in a darkening world, which, thanks to the recent proliferation of “genetics counseling” clinics in modern hospitals, is increasingly hostile toward the congenitally weak and imperfect.
Although my form of brittle bone disease (OI, osteogenesis imperfecta) is quite mild, I experienced some fifteen or so fractures in my youth. My high school classmates gave me such winsome nicknames as “Fragile Phil” and “Brittle Burcham.” OI also affects one’s hearing: Wearing bulky hearing aids from age thirteen did little for the machismo of a teenage boy coming of age in 1970s Australia.
After marrying my wife in the United States on completion of my postdoctoral studies, we returned to Australia, where our daughter was born a few years later. One day, our petite ten-month-old infant was trying to pull herself up using a chair leg for support. My wife heard a popping sound and a whimper as she flopped back onto the floor. X-rays indicated she had snapped a tibia.
Upon learning of the disorder affecting my family, the emergency-room staff in the local children’s hospital told us about a gifted doctor who knew a lot about OI. I was keen to meet the doctor, given my positive memories of the orthopedic surgeons who cared for me in childhood. A pharmacologist by training, I also knew that the bisphosphonates—a class of drugs developed for osteoporosis sufferers—were then being tested on OI patients. I hoped the doctor would know if they might help our daughter.
We found the doctor had little interest in the clinical management of pediatric OI patients and knew little of bisphosphonate pharmacology. The doctor and attending nurse initially engaged us in chatty small talk, but their intentions soon became clear: They wanted to know whether we hoped to have another baby. After my wife said we did, exasperated grimaces passed between them.
“If that is the case,” the doctor replied, turning toward me, “we will need to obtain blood samples from some members of your extended family to allow DNA testing.” Fearing my family might be reluctant to participate in a research project, I naively asked why the genetic data was required. Waving a dismissive hand toward our daughter, who until this point had tried her darndest to win the doctor’s attention with coy smiles and giggles, this gifted physician who knew so much about the disease abruptly replied, “We want to ensure you don’t have another one of those!”
My emotions now resembled those of Hansel and Gretel at the point of their rude awakening in the famous fairy tale. Like the sugary treats fastened to the witch’s cottage, the saccharine assurances from the ER staff that this doctor was keen to help OI patients had obscured his intentions: They had brought us to a eugenicist who wished to push any of my future OI-affected offspring into the oven.
My wife had awoken to the same reality, and in one of the most galvanizing moments of our marriage, with firm voice she informed the doctor that she would never consider aborting a child within her womb. We were promptly shooed from the room.
Upon reflection, this episode exposed several questionable assumptions that underpin modern genetic counseling services. Unfortunately, those involved in these practices rarely, if ever, publicly clarify the beliefs that guide their daily work. What are these beliefs and their likely social consequences?
First, genetic counseling clinics essentially promise to “purify” the genetic stock of the populace, believing this will provide lasting benefits to any nation. I beg to differ. The negative impact that abortion would undeniably have exerted upon my own family line confirms that no physician on earth could possibly foresee the life achievements of future descendants of frail parents.
Subscribe to Free “Top 10 Stories” Email
Get the top 10 stories from The Aquila Report in your inbox every Tuesday morning.