Topic: Science & Technology

"Ick!" versus Ethics, Part 2: Designer Disabilities
(1/29/2007)

The news was startling, and almost compelled revulsion on ethical grounds.

A relatively new procedure called embryo screening allows clinics performing in vitro fertilization to scan a newly created embryo for genetic defects prior to implantation in the mother's womb. Those found to have defects are usually destroyed. But a recent survey of clinics that perform the procedure revealed that 3% of responding clinics have used screening to assist parents who want a genetically abnormal child, typically one who will be deaf or a dwarf. The strangeness of such a practice guarantees that the "Ick Factor" will produce widespread condemnation of it as unethical. For decades ethicist have been warning of the coming era of "designer babies," and now it is arriving in an unexpected form, with parents using technology to create imperfect babies! Ick! How can this possibly be ethical?

Not only can it be ethical, it probably is. But first we have to examine what is really happening, and why.

Several groups of people with particular disabilities have adopted the position that they are not in fact disabled, but rather "differently abled" minorities with distinct cultures and life-styles. As perceptively explored by Lennard Davis in his recent article for the Chronicle of Higher Education, "Deafness and the Riddle of Identity," these groups are beginning to use the model of the civil rights movement rather than the rhetoric of advocates for the disabled to define themselves. Thus it is natural and consistent, they believe, for deaf parents to want to have children who share their "culture," meaning deaf children, and legitimate for parents with dwarfism to want to ensure that their child has their distinguishing characteristic. Is this unethical?

It certainly would be if science was being used to make disabled babies out of normal ones. That is what has been implied by many of the media stories about this use of pre-natal genetic testing; "Babies with made-to-order defects?" was the Associated Press headline, and it is incorrect. Nobody has taken a normal embryo and given it genetic defects. The defects occurred naturally because of the genetic material of the parents. What then occurred was that the parents chose to have the genetically abnormal embryo implanted in the womb, giving it a chance to develop into a child. That is the action that must be evaluated ethically. They allowed an embryo to develop, grow and live.

How can such a decision possibly be called unethical?

Let's look at this from the embryo's point of view. The options are to grow into a deaf person or a dwarf in the care of loving parents, or not to be born at all. Clearly, this would be an easy choice for any embryo. "Sure, Mom, Dad; I'll accept a lifetime of using sign language, especially if the alternative is the trash chute!" The ethical criticism of that choice must be based on the critic's conclusion that destroying an abnormal embryo is better than giving it life, even if that life could be rewarding and productive. After all, Beethovan was deaf; Steinmetz was a dwarf. Saying that the in vitro fertilized embryo of a potential composer or inventive genius shouldn't be implanted sure sounds like eugenics, as do the comments of one of the doctors interviewed in the AP story. Dr. Mark Hughes, who runs a Detroit laboratory that does the screening for many fertility programs nationwide, said he wouldn't do the procedure if it was going to be used to select an abnormal embryo."To create a child with a disability because a parent wanted such a thing ... where would you draw the line?" Hughes told AP's reporter. "It's just unethical and inappropriate, because the purpose of medicine is to diagnose and treat and hopefully cure disease." And if you can't "cure" the abnormal embryo, kill it, Dr. Hughes? Surely, he can't mean that. But what else can it mean, practically speaking?

His line-drawing question, however, is a valid one. Should blind parents be permitted to intentionally create blind children? Should mentally challenged parents be permitted to implant Down Syndrome embryos? Any disability can spawn a "culture" and be called a minority. But often the answer to "where do you draw the line?" is, for the time being, "Well, not here!" That is the answer today to the procedure's use by deaf and dwarf parents. I find it far more ethically questionable for parents to discard healthy embryos because they lack genetic markers for superior intelligence and physical performance than I am by parents implanting those that they know are, by "majority" standards, imperfect.

If a deaf couple has two embryos tested and one is perfect while the other will produce a deaf baby, what is the ethical choice? I'd argue that the most ethical choice would be implanting both embryos, but failing that, it makes no difference which is chosen. A deaf, or disabled, or "minority" life is worth no less than a hearing, or normal, or "majority" one. The embryo chosen is certainly lucky that it gets a chance to live while its sibling does not, but the parents and the doctors helping them do not cross any ethical lines by choosing the deaf one for that opportunity.

Undoubtedly, there are ethical lines ahead on this road that should not be crossed. We can only hope that we judge wisely where they lie. When that judgement comes, it should be made, like this one, without bias from the "Ick Factor." Simply because it seems strange to those of us without disabilities that any parents would take measures to ensure that they have abnormal offspring doesn't make it inherently wrong.

Related Commentary: "Ick!" versus Ethics, Part 1: The Infantilization of Ashley

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