Response to Confessions of a Genetic Outlaw

Business Week has just published a response to my recent essay, Confessions of a Genetic Outlaw(which Rob graciously brought to your attention a few weeks ago).  In this response, "New Hope for Families with Genetic Risk", Rosie Barnes, the chief executive of the Cystic Fibrosis Trust, explains:

. . .  for those who do not want to bring another child with CF into the world and for whom a termination is unacceptable, pre-implantation diagnosis offers a positive way forward. Until recently it was only technically possible for those who carried the most common CF mutation (more than 1,200 mutations have been identified to date) and some couples could not take advantage of it.

This new technique has changed all that. By identifying a CF-affected gene without having to identify the specific mutation, all couples who know they are at risk of having a child with CF can consider pre-implantation diagnosis.

Again, there have been hostile voices, accusations of "playing God" or creating "designer babies." However, we are not trying to create exceptionally beautiful children, very talented children, or any sort of "super" baby. We are simply trying to ensure that this child makes healthy mucus like most of the rest of us and doesn't have to face a life of constant treatment, clogged airways, and a shortened life expectancy.

Alleviating human misery lies behind a lot of medical research. We try to cure the common cold. We develop vaccines. We attempt to second guess and outwit cancer. Are we redesigning human beings or playing God in those cases? As a practical measure to give families who usually already have one child with CF the option of sparing another child the same condition, this development is to be warmly welcomed.

The trouble I have with this argument is that this pre-implantation selection is not, in fact, ensuring that "this child" makes healthy mucus, and it doesn't spare "another child the same condition."  The child that's being selected out isn't being spared the condition, it's being "spared" experiencing the difficult life it would have with the condition; it's being spared the experience of life, period.  It may ensure that the embryo the parents do decide to bring to term will not have that condition, but it doesn't help the embryo that was diagnosed.

I do have enormous sympathy for parents wanting to make use of these new technologies to spare themselves and their children suffering.  As I explain in my essay, I know that most of these parents are not trying to create perfect super babies.  But I'm afraid there are two especially pernicious consequences to doing more and more of this refined weeding out of the "imperfections" that we're getting so good at identifying earlier and earlier.  First, we're sending a strong message to people currently living with those same conditions that we do not truly believe they are worth the expense and the trouble it takes to integrate them into our lives.  Second, we are making it more and more difficult for those of us who are convinced that God's image is revealed equally in the "imperfections" and in the suffering of those dealing with imperfections to justify NOT doing the same kind of weeding. 

Lisa