How contemporary, I thought. And how destructive of attempts to tell the truth.
Ellen Painter Dollar does not say yes or no in No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction, but she tells the truth. In a book that is part memoir, part journalism, she recounts her lifelong struggle with osteogenesis imperfecta (OI)--her own and her daughter's.
OI, she writes, is "a genetic disorder better known as 'brittle-bone disease.' Frequent broken bones, often as the result of little or no trauma, are the hallmark of OI." People with OI will spend a lot of time in emergency rooms. They will have a great deal of pain. They may also have "muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature," says the OI Foundation's website. They may look funny, especially to mean kids in middle school. Because of their frequently broken bones, their parents may be accused of child abuse. And half the kids born to people with OI are likely to have OI too.
Except that nowadays, reproductive technology offers potential parents a choice. For nearly 35 years, it has been possible to fertilize an egg in a test tube ("in-vitro fertilization," or IVF) and then implant it in a woman's womb. For more than 20 years, it has been possible to examine those fertilized eggs for genetic mutations and implant only the healthy ones. This is called "preimplantation genetic diagnosis," or PGD. If Dollar and her husband could come up with the money, they could use PGD to assure that, if they had a second child, it would be born free of the disease she and her daughter shared.
So, should the Dollars have looked for dollars and gone for an OI-free child? Yes or no?
Before saying "No brainer!" or "No way!" you'd do well to read No Easy Choice. If you like things cut and dried, it will drive you nuts. Dollar sees the good and the bad, the right and the wrong, the wise and the foolish in just about every argument. She tells stories that show how solidly she identifies with everyone who's struggling with reproductive issues. But after you've sat down with her and examined dozens of arguments pro and con, and after you've joined her in wrestling with scores of intellectual and emotional questions regarding her own highly charged decisions, you'll have a much better idea of the possible implications of any choice you, or anyone else, might make.
This is a personal story, not a textbook on medical ethics. Dollar is an evangelical Christian, and her conservative faith is the ever-present background of her drama. Don't expect her book to sound like a sermon, however. It is compulsively readable, with a touch of suspense. When you have finished it, you will feel that you and Ellen are friends. You may be surprised by her eventual choices. You may disagree with other readers about whether she made the right decisions. You may, in fact, not be entirely sure about where she stands.
This openness, I think, is one of the strengths of No Easy Choice. Dollar knows that not all questions have yes-or-no answers, and she refuses to check those boxes when a decision requires more nuanced thinking. Instead, she faces the hard questions and their real-life implications, looking at the yeses and the noes and the maybes and the maybe nots. In the end, she does what we all must do, given our human fallibility--she leans on God's grace for wisdom, forgiveness, and courage.
I don't think it will be a spoiler if I quote the last sentences of her book:
The Christian narrative does not provide an obvious answer to whether it's ethically sound for believers to use IVF, PGD, or other assisted reproduction techniques. But it does provide a grounded, hopeful context in which to ponder essential questions about whether and how we will bear children as technology offers us ever-more-sophisticated techniques to do so. Infertility and family legacies of genetic disease inevitably cause substantial pain, but the Christian story invites us, even while we are mired in that pain, to believe in and cling to the extremity of love.