I had never heard of Treacher Collins syndrome until the other day, when I read this article on the BBC. As a new parent, I was pretty shaken by the grim reality it presents.
The subject of the story is Jono Lancaster, a 26-year-old Englishman whose face is severely disfigured because of Treacher Collins. The condition, which is genetic, stunts the development of cheekbones. Because of this Jono’s eyes sag low, and he has trouble hearing and smelling. He was born like this; and the disease affects about one in 10,000 people in the United Kingdom.
What captured my attention most powerfully was not Jono’s face, though, but the dilemma he’s now facing in deciding whether or not he and his girlfriend will pursue having children when the time comes. Treacher Collins syndrome is hereditary; and any child he fathers will have a 50% chance of inheriting the condition. What makes things worse (if that’s possible) is that Treacher Collins varies in severity—babies in the most extreme cases can’t breathe, and require tracheotomies, jaw extractions, or round-the-clock care.
For Jono, adoption is an option (Jono himself was adopted). But he’s conscious that Laura, his girlfriend, “thinks she will have those instincts of really wanting to carry a child, and she’s worried that she might find it hard to look after someone else’s child—of that the child will just want to find its natural parents.”
Jono’s desire for children is understandable. And his commitment to navigating the moral maze surrounding the decision is laudable. He doesn’t take it lightly. In fact, he says, if they decide to conceive naturally, “abortion is not an option.” “I want to make the right decision,” he says. “Right from the very start. So if I decide to have a child naturally, we go through the whole thing. Not just give up on it halfway through.”
An alternative to disappointment and (possible) abortion, however, is in vitro fertilization with pre-implantation genetic diagnosis (PGD). The article describes this as “controversial—both ethically and from a religious point of view—because it involves testing embryos for genetic disorders before implanting an unaffected one in the womb.” This is all quite right. Another way of putting it is that IVF with PGD eliminates the need for post-implantation abortion by selectively aborting ‘defective’ embryos prior to implantation.
Jono and Laura realize this is a moral dilemma. And it’s an issue that takes a decidedly personal turn. “When I first heard of IVF PGD,” Jono says, “I had this kind of moral dilemma going on in my head, that if my parents had chosen to do it, I wouldn’t be here today.” Jono realizes that the procedure entails an inherent quandary; and he knows that “Laura would bear the brunt” of it—hormone injection, egg extraction, etc. He says dealing with the thought is an “emotional rollercoaster,” but he continues to grapple with it.
Although Jono and Laura haven’t made any decisions, yet, there are a few big take-aways we get from their preliminary thoughts. First of all, their inclination that abortion and IVF PGD are one and the same thing is spot on. At least in the BBC article, Jono doesn’t oppose IVF outright (the author even suggests that “Jono thinks having a child through IVF PGD is probably best [sic] option for their child”). But his visceral reaction against pre-implantation screening—and embryo destruction—says a lot about his cognizance on the facts of the matter.
Secondly, the couple’s willingness to continue wading through the murky waters of beginning-of-life ethics is a testament to their commitment to put right reason ahead of easy options. Even in the thick of making a decision that could have profoundly negative effects for a future human life, Jono and Laura realize that simply conceiving naturally—without IVF, and without the possibility of abortion—might be a perfectly acceptable moral option. (In fact, I would say, it is a perfectly acceptable moral option.)
Ultimately, Jono’s struggle is one of prudence, capped on either end by extremely significant ethical realities—and all in the midst of a personal endeavor to embrace Treacher Collins syndrome for himself. While IVF is not an ethically viable option (nor is abortion), to choose natural conception is not an ethical requirement. The third way—namely, to abstain from having children altogether—remains on the table.
Jono does have a final insight that will ultimately (hopefully) guide the couple’s decision: “Starting a family should be a romantic and exciting time.” His understanding that “romantic and exciting” does not necessarily translate to “ideal and careless” is admirable. And I hope this clarity informs his decisions as time goes on.