Should parents be allowed to choose whether their child has a genetic disease?

Your gut reaction is probably that the question is irrelevant; what parent would choose for their child to have a genetic disease. That was my reaction.

Apparently, however, some parents with genetic diseases that make them lead relatively normal lives but isolate them into special social groups -- such as deafness or dwarfism -- are electing for their children to also have these genetic diseases. As reported in the NYTimes:

Wanting to have children who follow in one's footsteps is an understandable desire. But a coming article in the journal Fertility and Sterility offers a fascinating glimpse into how far some parents may go to ensure that their children stay in their world -- by intentionally choosing malfunctioning genes that produce disabilities like deafness or dwarfism.

The article reviews the use of preimplantation genetic diagnosis, or P.G.D., a process in which embryos are created in a test tube and their DNA is analyzed before being transferred to a woman's uterus. In this manner, embryos destined to have, for example, cystic fibrosis or Huntington's disease can be excluded, and only healthy embryos implanted.

Yet Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at Johns Hopkins University recently surveyed 190 American P.G.D. clinics, and found that 3 percent reported having intentionally used P.G.D. "to select an embryo for the presence of a disability."

In other words, some parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and fathers don't view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture.

It's tempting to see this practice as an alarming trend; for example, the online magazine Slate called it "the deliberate crippling of children."

But a desire for children with genetic defects isn't new. In 2002, for example, The Washington Post Magazine profiled Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who both attended Gallaudet University and set out to have a deaf child by intentionally soliciting a deaf sperm donor.

"A hearing baby would be a blessing," Ms. Duchesneau was quoted as saying. "A deaf baby would be a special blessing."

Born five years ago on Thanksgiving Day, the couple's son, Gauvin, was mostly deaf, and his parents chose to withhold any hearing aids.

Controlling a child's genetic makeup, even to preserve what some would consider a disease, is the latest tactic of parents in an increasingly globalized society where identity seems besieged and in need of aggressive preservation. Traditionally, cultures were perpetuated through assortative mating, with intermarriage among the like-minded and the like-appearing.

Modern technology has been adopted for this purpose; for example, a quick Web search reveals specialized dating services for almost any religious or ethnic subgroup. Viewed in this context, the use of P.G.D. to select for deafness may be merely another ritual to ensure that one's children carry on a cultural bloodline.

Still, most providers of P.G.D. find such requests unacceptable. Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. "In general, one of the prime dictates of parenting is to make a better world for our children," he said in an interview. "Dwarfism and deafness are not the norm." (Emphasis mine)

In thinking about problems like this one, I think it is important to look at alternative scenarios to try and draw a line for yourself between ethical and unethical behavior. I am going to list a couple of scenarios. Just try and think about which ones you think the parents/people-involved should be allowed to do:

• 1) An Indian woman, deciding that men from other races would not understand her culture enough to make her comfortable and preferring to have children raised in that culture, elects to only date Indian men.
• 2) A Jewish man, deciding that women from other religions would not understand his culture and preferring to raise Jewish children, elects to only date other Jews.
• 3) A conservative Christian woman knows that she is a carrier for a potentially fatal genetic illness. She becomes pregnant. She undergoes chorionic villus sampling to determine whether her child will have the illness. She is told that the child does. Instead of electing abortion, she chooses to carry the child to term.
• 4) A conservative Christian woman knows that she is a carrier for a genetic illness that is not fatal. (She does not manifest it.) She becomes pregnant. She undergoes chorionic villus sampling to determine whether her child will have the illness. She is told that the child does. Instead of electing abortion, she chooses to carry the child to term.
• 5) An African American woman giving her child up for adoption requests that her child be given to only another family of African Americans -- because then the child will be raised to be more like her.
• 6) An African American family selects a child to adopt that is also African American because they would like that child to look like them.

(1) and (2) address the issue of assortative mating. We choose to date only certain people; we choose to have children with only certain people. In selecting a mate, we make statements about our values. The situation is not fundamentally different for a woman with dwarfism only wanting to date other little people. In doing so, she is making a statement of values -- that her culture is important and worth saving. Furthermore, by choosing to have children with them, she is dramatically increasing her chances of having a child with dwarfism. She is, in effect, performing a less effective genetic manipulation to guarantee the identity of her offspring.

(3) and (4) address the issue of illness severity. We allow people in this society the privilege of electing when they are going to have children. Technology allows them prior knowledge of what those children are likely to be like -- what their prospects are if they have a terrible disease. Many people decide to not carry children that are genetically doomed to term, but a great many people do. They do this because they believe in the principle that a child deserves a chance at life, even if it is a slim and scientifically irrelevant chance. Furthermore, even if the disease is not fatal, simply debilitating, these parents assert: "Who are you to say that my child's life is not as sacred, not as enjoyable for him or her, not as worth saving as any other child's?" Because these children cannot speak for themselves, we allow their parents to act as their proxy.

(5) and (6) address the issue of culture. As much as we sometimes refuse to admit it, we want our children to be like us -- and we are willing to take steps to make sure that is so. If you are liberal, you want your child to be liberal. If you are blue collar, you may want your child to be blue collar. It is painful -- for the parents and for the child -- for the child to renounce his or her parent's values. And the issue of how the child looks matters a lot. I knew a guy in high school who was an African American albino. You have no idea how much ostracism he felt because he didn't look black. How we look is sometimes a proxy for our values, and parents take steps to make their children look like them because fundamentally they would like their children to act like them.

In the examples I listed above, most people would allow the parents/people-involved liberty to choose what they think is best. Further, I argue that for those examples the parents/people-involved are expressing the valid aspiration of having their children reflect their values. Surely, there are limits; we would not allow a parent to teach their child to perpetrate violence. But the examples above fall within those limits.

As odd as I may find the parent's behavior in the NYTimes article, it is not really my privilege to make the choice for them. They have every liberty to express their views in their children -- in a way no different from if I chose to teach my child creationism as opposed to evolution.

Will their children judge them and judge poorly? Possibly, but not definitely. From what I have heard about individuals in deaf culture is that they prefer it. I have every reason to believe that little people who grew up in a family of little people wouldn't trade it for the world. The idea of normal does not have a genetic or evolutionary meaning. It has a cultural meaning, but that meaning is essentially arbitrary.

The NYTimes also ran a discussion with web comments on this issue that can be found here.