Friday, December 08, 2006

Taking Reproductive Technology Too Far

A few days ago an article entitled, “Wanting Babies Like Themselves, Some Parents Choose Genetic Defects” was published in the NY Times. It described a growing trend in assisted reproductive technology. Preimplantation genetic diagnosis, (PGD) is a process where embryos are created in a test tube and then their DNA is analyzed for any abnormalities, specifically hereditary diseases such as Huntington’s disease, prior to being implanted in the uterus. The unpredicted interpretation of the procedure is parents choosing abnormalities, such as deafness or dwarfism.

While reading the article I was struck by obvious ethical conflicts. The first is the principle of non-malificence, or a doctor’s obligation to do no harm. Is intentionally creating a child with a significant physical disability violating this principle? Yes. The individuals involved would be writing the child’s life story for them, and setting them up for a life of pain and struggling. The article quotes Dr. Robert J. Stillman who reminds us all that “one of the prime dictates of parenting is to make a better world for our children.” One cannot forget the responsibility of the parent and their obligation to do what is in the best interest of their child. Is the “deliberate crippling” of these children the way to do that? I say no.

The second major issue that stuck out to me was the idea of the child’s rights. A lesbian couple, both of which are deaf, was referred to in the article. They decided that the best child for them would be a child with deafness, so they searched for a deaf sperm donor to increase their chances. They were successful and their son was born mostly deaf. They then selected to not give him hearing aids. This is absurd! They are denying their child the right to hear. They have withheld opportunity and ability. The medical community or social society should not support such behavior. The precedent being set by such actions is very dangerous.

Numerous case examples brought up in the article were scenarios of parents choosing a dwarfism gene, and saying that having a child with dwarfism, like themselves, would be “a blessing” and they could not imagine what life would be like if their average height child had to deal with little parents. But I think that the meaning of that claim is coming from a different place. I think that what many parents are probably thinking is “what is my life going to be like when she is different from me?”

I have a strong belief that much of the use of the new reproductive technology comes from a selfish place in parents. The title of this article is pitch-perfect, “Wanting Babies Like Themselves…” In choosing genetic defects for their children, parents are manipulating the PGD process and taking the preventative intention out of this technology. As Dr. Yury Verlinsky states, “If we make a diagnostic tool, the purpose is to avoid disease.” People need to be cautious to not take advantage of biotechnology, take care in their decision-making, and beware of shortsightedness.

[written by kmcmanamy, a University of Vermont student -- thanks, Casey!]


BuddhistValkyrie said...

I'm sorry, Casey, but I'm going to have to respectfully disagree, and suggest that you are possibly arguing from your emotions, and not your intellect.

You say that it's absurd to deny a child the right to hear, without necessary stopping to think about what you're saying. You're perpetuating a normative view, that there is a standard or perfection of what the human body should be and do, and anything deviating from that is outside the norm, is bad, and should be fixed.

Are you saying he should have regular hearing aids, or cochlear implants? Are you saying he should be raised oral, and not Deaf, learning the language and culture of his family? Implants are only useful if there is language around to hear - are you saying that this child should not go to the schools that are taught in ASL, but instead be mainstreamed? Have you looked at the data that shows the negative effects of putting deaf kids with hearing aids into hearing classrooms, and not being sent to their own schools, where they're around people sharing their culture?

Or are you familiar with what many people in the Deaf community already know, and studies have begun to back up: that hearing children born to Deaf parents have a slower start at acquiring English, and tend to need a lot of help with it, because it's not their home language, natural language, and they're often behind in their education for years because of it?

How about the damage that cochlear implants do, destroying what remains of the lining of the ear canal, insuring that if technological advances are made in hearing devices, those who are already outfitted will not be able to use them should they choose? Or the fact that there is a great myth in hearing culture that says cochlear implants will bring about perfect hearing, when that's quite often not the case.

Being the intermediate realm of hard of hearing creates someone alienated from two strong cultures - the hearing and the Deaf. And as you say, parents do want children like them - children who can share their culture, the culture of the people around them. Do you actually intend to say that there is more inherent value in the hearing culture, and that it would be better for a child to be alienated from the Deaf culture of their family for the hearing culture they will have friends in, but nothing else?

And that's not even to begin talking about how difficult it is to raise a child who isn't in your culture, or your experience. Who you can't hear, or can't hear you.

What does it mean to be normal? When do we decide what is not valid, what must be fixed, and why do we suddenly get to arbitrate on cultures like the Deaf, or Little People, just because we can hear, or are of average height?

I apologize for the stridentness of my response, but I honestly feel like these are all things that few people consider when they begin to talk about things like this. For example, why have we heard no complaints about all of the congenitally deaf men and women who meet and marry, and when they reproduce do the same thing that the lesbian women did - create genetic odds of having a deaf child? We don't blink at this "normal" behaviour - we only scream when it's a lesbian couple who wants to do the same things as these "normal" deaf couples. But because they had to find sperm, instead of falling in love with the sperm donor, there's an issue, an outcry?

It all comes, again, back to that word normal - and who's controlling the definition of it, how it's applied to other people, and how we treat people who deviate from our strict definitions of it.

Daniel Goldberg said...

I also disagree, and share some of valkyrie's concerns.

Moreover, some participants in Deaf Culture often insist that deafness is merely a different language. They contend that being deaf is exactly like traveling to a foreign country where you do not speak the language.

Of course, participants in Deaf Culture do have language -- multiple languages, in fact (or at least multiple dialects).

Thus, telling Deaf parents who share these views -- which are by no means universally shared within Deaf culture -- that their child is ethically required to receive a cochlear implant is tantamount to making a normative claim about the worth of sign language. It is to suggest that a primary factor in Deaf Culture is insufficient, is somehow not enough without the languages of the hearing.

I'm not suggesting everyone has to be convinced by this. Far from it. But I think the critique has merit and must be met head on, and that therefore the ethical problematic is not completely resolved by the principle of nonmaleficience.

All of the above JMO.

Emilie Clemmens said...

I think it's good that Casey has pointed out the inherent ethical conflict for physicians and medical personnel involved in these scenarios. As BV alluded to above, no one is crying foul (nor should they, IMO) when people with disabilities choose to reproduce, though risk to the child is a given. The unusual element here is not necessarily the use of a new technology but the participation of third parties in procreative decision-making. We are quick to criticize and attempt to regulate the behavior of parents that we deem aberrant, and the participation of a third party provides the avenue for us to interfere. We ought to be cautious how we proceed along this path and be mindful of the potential consequences for all our liberties.

Linda MacDonald Glenn said...

As a lawyer and former legislative council to a state HEW committee, I've seen the deaf community come out in droves to support legislation that would require healthcare providers and insurance companies to provide translators to deaf patients, pursuant to the American with Disabilities Act. It seems to me you can't have it both ways -- argue that deafness is a disability, claim that you should be accomodated, but then say, well is not really a disability, it's just a trait, when it comes to PGD -- Would you allow parents to deliberately create disabled children in other ways?