Monday, March 13, 2006
Yesterday's New York Times Magazine contained an article by Elizabeth Weil discussing wrongful birth lawsuits. She states,
The practice of terminating specific pregnancies, as opposed to aborting pregnancies so as not to have a child at all, is seldom discussed in its baldest terms. It is also poised to rise. Just this past November, scientists at Columbia University published a major paper in The New England Journal of Medicine on the effectiveness of new, noninvasive techniques for screening for Down syndrome in the first trimester, when the decision to terminate will most likely be more common and, some argue, more humane. In in vitro settings, a new technology called P.G.D. — preimplantation genetic diagnosis — allows doctors to test for genetic defects days after fertilizing an egg in a petri dish. Perhaps most important, the number of prenatal genetic tests is increasing exponentially — it jumped from 100 to 1,000 between 1993 and 2003 — and no regulations yet guide parents and doctors about fair reasons for terminating or going forward with particular births. Should it be O.K. to terminate a deaf child? What about a blind one? How mentally retarded is too mentally retarded? What if the child will develop a serious disease, like Huntington's, later in life? According to one reproductive legal scholar, Susan Crockin in Newton, Mass., "As reproductive genetics opens up new possibilities, we should expect to see more of these cases, and we should expect to see more novel issues."
At present, courts in about half the states recognize wrongful birth as a subset of medical negligence or allow lawsuits under the more general malpractice umbrella if a doctor's poor care leads to the delivery of a child the parents claim they would have chosen to terminate in utero had they known in time of its impaired health. In some of these states, like New York, . . . emotional damages — compensation for the distress incurred by having an impaired child — cannot be recovered. No matter the legal context, terminating a wanted pregnancy is no one's first choice, but for the time being at least, when faced with a fetus that will become a severely handicapped child, all the choices are bad. At this moment, we are fairly adept at finding chromosomal flaws and horribly inept at fixing them. . . .
An unintended and particularly disconcerting consequence of all these new reproductive lawsuits is that they may bias the medical establishment toward termination, and some argue that such a bias already exists. This is alarming for many reasons, not least of which is the fact that several studies have shown that the raising of children with impairments is on the whole a lot less difficult and a lot less different from raising so-called normal kids than we imagine it will be. "Families with severely impaired children do not differ significantly in stresses and burdens from families with normal children," Wasserman, the bioethicist, maintains, citing articles like "The Experience of Disability in Families: A Synthesis of Research and Parent Narratives." The idea that a handicapped child will destroy a marriage is exaggerated, he told me: "A child prodigy can have just as large an impact on a family as a child with cystic fibrosis or Down."
The entire article is a terrific read and provides a fairly complete background to some of the issues faced by families and the medical profession. [bm]