Valuing Life, Preventing Suffering: A Central Tension in Genetic Screening for Disability

I’m attending and speaking at the 3rd annual Summer Institute on Theology and Disability, held this year at the Catholic Theological Union in Chicago. This afternoon, I will read from my book, No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction, and host a conversation on the promises and perils of genetic screening for genetically based disabilities. Once again, I’ll be focusing on what I see as the central tension in assessing these technologies—the tension between a compassionate desire to prevent very specific types of suffering caused by specific genetic mutations, and an equally compassionate desire to accept and celebrate all people as they are, with all of their/our unique qualities, including those influenced by genetic disorders.

I wrote a guest blog post for the Bethesda Institute (a sponsor of the Summer Institute) discussing this tension, as well as my recent attendance at the national Osteogenesis Imperfecta (OI) Foundation conference. The post begins:

I am writing this post from a hotel in Arlington, Virginia, where I am attending a conference of people with my genetic bone disorder, osteogenesis imperfecta (OI). OI is a collagen disorder that leads to fragile bones, skeletal deformities, and other symptoms. As I always find when I attend these conferences, the greatest benefit does not come from learning about the latest research or functional adaptations. Rather, it comes from being surrounded, as I so rarely am, with people who look and function as I do.

I have been a 4-feet 7-inches tall woman with a barrel chest, crooked legs and spine, and a limpy gait for three decades now, and I usually focus more on the demands of daily life (groceries, kid carpooling, work deadlines, puppy housebreaking) than my body’s quirks. But there is something utterly freeing about being in a room full of people who also have barrel chests and crooked bones and limpy gaits. I can let go of the veneer of self-consciousness that has become so fused to me that I usually don’t even notice it is there. At an OI conference I feel completely comfortable, in a way I don’t always feel in my regular life, with who I am.

To read the entire post, click here.