About a month ago, sitting outside our cabin at camp, three close friends and I debated this very subject. We were prompted by a book I had found called “The Book of Questions,” written to stimulate both individual reflection and group discussions. I opened the book to a random page and encountered a similarly worded question. Having read in school about this Eugenics Temptation, and having very strong opinions on it myself, I eagerly read it aloud to my friends, who were currently lounging on plastic deck chairs.
I immediately followed the question with my answer. Yes. Absolutely yes. I had/have no doubt in my mind that were I given the choice to screen my child for diseases, I would jump at the opportunity. My friends, however, were not so sure. One, coming from a religious standpoint, disputed the ethics of tampering with God’s creation. That I countered with the existence of medicine. Doctors dole out pills and prescriptions every day that cure or treat diseases and prevent the otherwise natural outcome. Genetic screening would merely head that off, relieving that pain and unhappiness far in advance.
The others were a little more subdued, feeling uncomfortable with the issue but lacking definitive reasons for their uneasiness. I asked them to take a look around.
Before I go on, I need to explain something. What I did not mention in my first paragraph is that this camp was not your typical summer camp. It was and is a camp for children with special health needs, where my friends and I spend our spare time volunteering. All around us were cases of HIV+, diabetes, and severe asthma, along with other unique cases such as an eight-year-old with only half of a heart, or a twelve-year-old so frail that she didn’t have the strength to cut her own food, let alone travel any distance without support or a wheelchair. I knew, and they knew, just watching them attempt to live out a normal camp experience, that each camper and his or her parents would grasp any chance, no matter the cost, to make him or her healthy and whole. I posed the question again, this time as Given the opportunity, before birth, would their parents agree to genetic screening, preventing a life of hurt for them and their child, both physical and emotional?
I thought so. And they agreed.
Another, more personal response I had to my friends dealt with my aunt, diagnosed when she was very young with Asperger’s syndrome, a mental disorder similar to autism. At the age of 39, she now works as a paper shredder at her company’s finance department, and lives within a half hour of her parents, who have hired an aide to help her with her daily life multiple days a week. That said, my grandparents are always there for her. My grandfather in particular talks with her often, puts up with the idiosyncrasies of a personality resembling a forgetful child, walks with her to make sure she gets her exercise, and loves her with all of his heart. But despite this warm, caring, tough exterior, can you not imagine the pain he feels every time he interacts with her? To see one’s adult child incapacitated socially and unable to take care of themselves must hurt tremendously. He loves her unconditionally and loves who she is, but given the chance, would he have circumvented all of that by an alteration in the womb four decades ago?
Again, I thought so. And I still do.