Saturday, January 19, 2013

No Easy Choice, by Ellen Painter Dollar

When Ellen Painter Dollar and her husband decided to have children, they knew their child would have a 50/50 chance of inheriting from Ellen osteogenesis imperfecta (OI), more commonly known as brittle bone disease.  Having lived with it all her life, and with memories of a painful childhood full of broken bones and casts, she was devastated when her first child was diagnosed with OI.  Still wanting to have children, she and her husband decided that for their next child, they would avail themselves of preimplantation genetic diagnosis (PGD), a means by which eggs fertilized with in vitro fertilization can be genetically tested for specific genetic traits.

In No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advance Reproduction, Dollar tells her story while exploring the moral, ethical, and theological questions her family faced during that time.  This is a deeply personal book which, without moralizing or forcing conclusions, explores perspectives on disability, on the beginning of life, and parenthood.

Ellen and family. Spoiler: the two younger kids do not have OI.
I was particularly interested in Dollar's views on disability.  If a family selects embryos in order to avoid having a child with a disability, what does that say about how they, or we as a society, value individuals with disabilities?  Shouldn't parents want to prevent suffering for their children?  If they can do so by not having a child with a disability, shouldn't they stop that pregnancy before it starts?  Would it be "a sin of parents to have a child that carries the heavy burden of genetic disease," as the Nobel-prize-winning developer of IVF suggested?

Dollar makes it clear that she believes we should by all means value individuals with disabilities.  She does not regret having her oldest daughter, OI and all, but she does wish she didn't have OI.  She acknowledges the impact that OI has had on her life, and the wisdom she has gained.  But "if given a choice between having the wisdom that comes from disability on one hand, and on the other hand forgoing the disability and perhaps some of the wisdom as well, I'd choose the latter."

She points out that parents want to protect their children from injury, hoping, for instance, that they won't have an accident that will paralyze them.  This is not because they don't value paralytics, but that they would prefer that their children not be paralyzed.  However, in my mind, this argument breaks down when applied to PGD.  Is she saying it's better never to have been born than to have been born with a painful or crippling condition?  On this side of the delivery room, it's an easy choice; no one (well, almost no one) wants to see children with disabilities euthanized.  But before implantation, the parent is making the determination that, for instance, it's better not to live at all than to live with Down syndrome, OI, or other condition.

As you can see, these decisions are profound and personal.  In telling her story, Dollar puts flesh and blood onto ethical dilemmas that may seem cut-and-dried to many.  She writes as a Christian, and would call herself pro-life, but many in the political sphere who are pro-life would reject her as not pro-life enough.  As her title suggests, parent who have genetic disabilities, or who are facing IVF and PGD, have some very difficult choices to make.  No Easy Choice can be a valuable resource for parents who are considering PGD and IVF as well as for the family, clergy, and medical professionals around them.

Learn more about Ellen at her blog

Thanks to Edelweiss and the publisher for the complimentary electronic review copy!

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