blog.bioethics.net

Botched Prenatal Test = Botched Knee Surgery? I Don't Think So.

But if you as Susan Wolf, professor at the University of Minnesota, she would tell you that suing for one screwed up procedure is no different than suing for another. Except for one small detail: when you screw up a prenatal test, the outcome can be that you have a child with anything from a mild to incredibly severe disability.

Then the question remains: what is a parent to do? Whom do they hold accountable for the medical care, the unanticipated struggles and tough choices that lie ahead in their own lives and the life of their child--and what, if in the case of one particular Oregonian couple, they wouldn't have had the child in the first place had the test not been botched?

Although such "wrongful life" cases are rare, they do happen--and they are very difficult, intellectually and emotionally to tackle. They are not as simple as equating an incorrectly performed genetic test with other kinds of medical tests because the outcome is a human life that cannot be taken back, ameliorated with secondary procedures (like with a bad knee surgery), or a "do-over" as with other kinds of tests. A child is born and someone--whether the parents or the state--must care for him or her, as in the case of the 2 year old daughter of Deborah and Ariel Levy, who was born with Down's Syndrome after a botched genetic test.

So, in our litigious society, these parents have chosen to do what seems probably like the only real option--to seek damages from medical center that performed the testing to the tune of $14 million dollars to "cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter". The lawsuit seeks additional monies to cover her life-long care needs as well as for both parents' depression and emotional stress.

The parents, if they are awarded this money, hopefully will be able to provide the very best life possible to a child that they would have never had--had they been given the correct test result. Whether or not one agrees with that moral choice, it is their choice to make and they were denied it by a medical mistake.

At the very minimum, this is the least society can do to help these parents adjust to a life that they otherwise would not have chosen and to ensure that over the life course of their child she has the care she needs. Of course, the Levys will adjust and cope and like most parents who have children with disabilities, their daughter's life will offer joys and experiences that they could have never imagined.

But undoubtedly, they have been forced into a situation by a medical mistake that never should have happened that is life altering and that does in fact cost millions of dollars for medical care and therapy. Is their daughter's life a "wrongful life"? In the initial shock of her birth and the aftermath, it may feel like it to them and it may not have been what they would have chosen for their lives as parents. However, absent that choice and given that they have two older children to raise, they must do the best they can. Demanding reparation for a 99% accurate test doesn't seem all that unreasonable when the results of being wrong last a lifetime for parent and child.

Summer Johnson, PhD