Miss-Delectable
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American Chronicle: Deaf by Design
In October 2004, Carina Dennis published an article in the journal Nature telling the story of a couple identified pseudonymously as John and Karen. The two of them were deaf, and they wished to take advantage of genetic screening to deliberately conceive a deaf child.[1] Their desire to create a child that would inherit their disability raised a number of interesting questions, which must have promptly been forgotten, since I just heard about all this today.
Those questions are raised again in an article published a few days ago in the Sunday Times of London, under the headline “Deaf demand right to designer deaf children.” A bill currently making its way through the House of Lords, the Human Tissue and Embryos Bill, would, if passed, make it illegal for parents in the U.K. to deliberately select for artificial insemination an embryo with a genetic abnormality if other, healthier embryos exist.[2]
Deaf parents claim the right to engineer deafness into their offspring in order to better allow the child to communicate with them, and to preserve their own unique deaf culture. Sadly—but predictably, I suppose—the conversations I have heard and read surrounding this revived issue focus less on the essential questions it raises, and more on whether or not such a thing as a culture built on a disability should even exist.
“Within deaf culture,” writes Dennis in her Nature article, “there’s a level of social intimacy that is rare among the hearing.” It’s this which deaf parents wish to pass on to their children more so than the disability which seems to facilitate it. Dennis goes on to say, “If you genuinely believe that your children will have at least as rich an emotional life if they cannot hear, and that you will be better able to communicate with them, why not make this choice?”
But whose rights should be paramount—those of the parents, to determine what is best for the child; or those of the child, who will have to cope with life in this world long after they have left the relative security of home? And is the distinctiveness of deaf culture reason enough to knowingly allow more children to be born with a handicap that will make their lives more difficult and deny them a vital means of interaction with the universe around them?
These are good questions, and they were asked on the radio today by Dom Giordano, guest-hosting for Bill O’Reilly on the radio version of his O’Reilly Factor program.[3] Giordano posed the questions so snidely that his opinion wasn’t hard to infer: parents who wish to genetically select in favor of hearing impairment for their children are punishing the kids for, ultimately, their own self-interests. Obviously. How could it be otherwise?
It is a tough argument to refute, and I’m not sure I even want to. Two deaf people who wish to have a child, knowing there’s a high probability it will be born deaf is one thing; two deaf people without such a high genetic probability who wish to use technology to ensure that a child who otherwise would be born with functional hearing will instead be born deaf, is something else.
The Nature article doesn’t follow up on John and Karen, but a bit of research reveals that another American couple were successful in their attempts to create a deaf child. Sharon Duchesneau and Candy McCullough, a deaf lesbian couple, conceived both their daughter Johanne and their son Gauvin with the help of a sperm donor whose family had a history of deafness going back five generations. Johanne is described as “profoundly deaf,” while Gauvin was said to have “a slight amount of hearing in one ear.”[4]
By focusing narrowly on the issue of deaf culture, Giordano managed a few interesting exchanges with callers, but, like O’Reilly, he demonstrated an uncanny knack for missing the bigger, much more important point. The issue to me isn’t about whether or not deaf parents should be allowed to deliberately conceive deaf children—it’s about whether or not babies should be genetically “designed” at all, by anyone.
Human beings have tried to exercise control over the conception of children for as long as such a thing has been possible, I suppose. The wealthy, fancying themselves the elite, have long prized “good breeding,” pairing off their children in the hopes of creating attractive, intelligent, genetically impeccable offspring. Given the opportunity, many such people would likely take advantage of genetic screening not only to ensure that their children would be free of debilitating disorders, but also to ensure they had the most desirable color of eyes, hair, and skin.
People with hereditary diseases have often exercised discretion when it came to having children. A man or woman with a genetic disorder—Huntington’s chorea, for example—with a high probability of being passed on to a child, might choose not to have children at all rather than doom their little boy or girl to a painful and incurable affliction later in life. It’s not as if parents tinkering with their children before they’re even conceived is anything new. What is new is the ease and the vast variety of choices awaiting parents in the coming years, as genetic screening becomes more reliable and precise.
Parents wanting to use genetic screening to prevent their child from being born deformed or afflicted with some horrific disease or disability is noble. I can’t fault their motives. Every good parent wants only the best for their children. The image of the father counting his newborn’s fingers and toes is so commonplace, it’s become a cliché. But history has shown us what happens when we try too hard to create ideal people. Screening out disease and disability is all well and good, but once parents have that option, how long before they also want to screen out green eyes, or red hair and freckles, or extremes in height or weight, or a thousand other variables which, for the preceding 200,000 years of our species, have been left up to hereditary chance?
For all the wonderful things about us, humans have an unfortunate tendency toward elitism, ethnocentrism, racism, sexism, homophobia, and a slew of other forms of exclusion. Our lives here in modern western society are already so unchallenging, so adjusted for our own convenience, that designer babies such as I’ve described are probably inevitable. The prospect of being able to tweak and customize our offspring before they are even placed in the womb, as though they are characters in a video game, will eventually prove too tempting for us to resist.
Maybe by then, a few deaf couples wanting to pass on their disability to the next generation won’t seem so alarming by comparison. For now, however blameless their motives are, I have to see them the same way I see all potential parents who claim the right to design their children: as selfish, and unconscionably arrogant.
In October 2004, Carina Dennis published an article in the journal Nature telling the story of a couple identified pseudonymously as John and Karen. The two of them were deaf, and they wished to take advantage of genetic screening to deliberately conceive a deaf child.[1] Their desire to create a child that would inherit their disability raised a number of interesting questions, which must have promptly been forgotten, since I just heard about all this today.
Those questions are raised again in an article published a few days ago in the Sunday Times of London, under the headline “Deaf demand right to designer deaf children.” A bill currently making its way through the House of Lords, the Human Tissue and Embryos Bill, would, if passed, make it illegal for parents in the U.K. to deliberately select for artificial insemination an embryo with a genetic abnormality if other, healthier embryos exist.[2]
Deaf parents claim the right to engineer deafness into their offspring in order to better allow the child to communicate with them, and to preserve their own unique deaf culture. Sadly—but predictably, I suppose—the conversations I have heard and read surrounding this revived issue focus less on the essential questions it raises, and more on whether or not such a thing as a culture built on a disability should even exist.
“Within deaf culture,” writes Dennis in her Nature article, “there’s a level of social intimacy that is rare among the hearing.” It’s this which deaf parents wish to pass on to their children more so than the disability which seems to facilitate it. Dennis goes on to say, “If you genuinely believe that your children will have at least as rich an emotional life if they cannot hear, and that you will be better able to communicate with them, why not make this choice?”
But whose rights should be paramount—those of the parents, to determine what is best for the child; or those of the child, who will have to cope with life in this world long after they have left the relative security of home? And is the distinctiveness of deaf culture reason enough to knowingly allow more children to be born with a handicap that will make their lives more difficult and deny them a vital means of interaction with the universe around them?
These are good questions, and they were asked on the radio today by Dom Giordano, guest-hosting for Bill O’Reilly on the radio version of his O’Reilly Factor program.[3] Giordano posed the questions so snidely that his opinion wasn’t hard to infer: parents who wish to genetically select in favor of hearing impairment for their children are punishing the kids for, ultimately, their own self-interests. Obviously. How could it be otherwise?
It is a tough argument to refute, and I’m not sure I even want to. Two deaf people who wish to have a child, knowing there’s a high probability it will be born deaf is one thing; two deaf people without such a high genetic probability who wish to use technology to ensure that a child who otherwise would be born with functional hearing will instead be born deaf, is something else.
The Nature article doesn’t follow up on John and Karen, but a bit of research reveals that another American couple were successful in their attempts to create a deaf child. Sharon Duchesneau and Candy McCullough, a deaf lesbian couple, conceived both their daughter Johanne and their son Gauvin with the help of a sperm donor whose family had a history of deafness going back five generations. Johanne is described as “profoundly deaf,” while Gauvin was said to have “a slight amount of hearing in one ear.”[4]
By focusing narrowly on the issue of deaf culture, Giordano managed a few interesting exchanges with callers, but, like O’Reilly, he demonstrated an uncanny knack for missing the bigger, much more important point. The issue to me isn’t about whether or not deaf parents should be allowed to deliberately conceive deaf children—it’s about whether or not babies should be genetically “designed” at all, by anyone.
Human beings have tried to exercise control over the conception of children for as long as such a thing has been possible, I suppose. The wealthy, fancying themselves the elite, have long prized “good breeding,” pairing off their children in the hopes of creating attractive, intelligent, genetically impeccable offspring. Given the opportunity, many such people would likely take advantage of genetic screening not only to ensure that their children would be free of debilitating disorders, but also to ensure they had the most desirable color of eyes, hair, and skin.
People with hereditary diseases have often exercised discretion when it came to having children. A man or woman with a genetic disorder—Huntington’s chorea, for example—with a high probability of being passed on to a child, might choose not to have children at all rather than doom their little boy or girl to a painful and incurable affliction later in life. It’s not as if parents tinkering with their children before they’re even conceived is anything new. What is new is the ease and the vast variety of choices awaiting parents in the coming years, as genetic screening becomes more reliable and precise.
Parents wanting to use genetic screening to prevent their child from being born deformed or afflicted with some horrific disease or disability is noble. I can’t fault their motives. Every good parent wants only the best for their children. The image of the father counting his newborn’s fingers and toes is so commonplace, it’s become a cliché. But history has shown us what happens when we try too hard to create ideal people. Screening out disease and disability is all well and good, but once parents have that option, how long before they also want to screen out green eyes, or red hair and freckles, or extremes in height or weight, or a thousand other variables which, for the preceding 200,000 years of our species, have been left up to hereditary chance?
For all the wonderful things about us, humans have an unfortunate tendency toward elitism, ethnocentrism, racism, sexism, homophobia, and a slew of other forms of exclusion. Our lives here in modern western society are already so unchallenging, so adjusted for our own convenience, that designer babies such as I’ve described are probably inevitable. The prospect of being able to tweak and customize our offspring before they are even placed in the womb, as though they are characters in a video game, will eventually prove too tempting for us to resist.
Maybe by then, a few deaf couples wanting to pass on their disability to the next generation won’t seem so alarming by comparison. For now, however blameless their motives are, I have to see them the same way I see all potential parents who claim the right to design their children: as selfish, and unconscionably arrogant.
