Designer Babies: Reproduction Rights and (So-Called) Disability

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Elisabeth Murrow by Vesna Jovanovic

Elisabeth Morrow by Vesna Jovanovic

Here’s an interesting case: A deaf couple decide they’d like to have a deaf baby, and manage to do so — twice, in fact — by enlisting a sperm donor with five generations of congenital deafness.

Did this couple do something wrong by — to paraphrase Alta Charo, a professor of law and bioethics — failing to reasonably maximize the advantages available to their children, thus setting limits on their children’s potential? Or did they do something right, or at least well within their ‘natural’ rights, by producing offspring most suited to the sociocultural context they know best, thus producing the circumstances most conducive to their being good parents? As one of the parents put it: “A hearing baby would be a blessing. A deaf baby would be a special blessing.”

The initial response that most of us have, it seems, is that these parents committed a moral misstep by shortchanging their children. I’m not so sure this is the correct response. Before coming to anything like a firm conclusion, here are ten challenges to which we’d need to subject our intuitions.

(1) Is this case any of our business?

My objective here is not to judge. Rather, my interest in the case is for its real-world philosophical value. So, I explore it while keeping in mind that the personal goings-on of this family are none of my business, and, hopefully, with sensitivity to the fact that the couple in question are well-meaning, and probably very good, parents.

At the same time, one’s acts toward other lifeforms become society’s business when those acts approach the boundaries of moral permissibility. While it’s not clear that this case crosses any such lines, it is precisely that lack of clarity that calls our philosophical attention.

With this ethos in place, let’s continue.


(2) Would we hold a heterosexual couple to the same standards?

This is a deaf lesbian couple who require sperm if they wish to bear children. Can we really tell them, just because they have to seek a sperm donor, that it must be sperm of a certain kind?

Consider: If a heterosexual couple were faced with a similar outcome — i.e., the man has five generations of congenital deafness — would we expect that couple to seek hearing-friendly sperm in order to decrease the probability of producing a deaf child? I don’t think so. For one thing, we accept that such a couple may take reproductive risks because they are in love; because they have the right to choose with whom they mate; because they have the right to pass along their genes, and thus some aspect of their identity, to their offspring; and perhaps for other reasons. It seems to me that these are the same sorts of considerations at play in the lesbian/donor case.

To emphasize the point, let’s extend this line of thinking further. Why don’t we tell ‘normally advantaged’ heterosexual couples that they should seek superior sperm? You know, for the sake of maximizing their children’s potential. Come to think of it, that sperm’s donor might be congenitally deaf, given that a brilliant, good-looking, confident deaf child would likely do better in life than an average child with five senses.

It’s beginning to seem that the lesbian couple in question has done no more wrong than your average heterosexual couple does when endeavoring to reproduce.

Before going further, I should point out that I’m assuming deafness to be, at the very least, a significant social disadvantage, and thus not to be taken lightly. Whether or not this disadvantage arises from a socially constructed framework, the disadvantage exists. There are many kinds of social disadvantages, which we may plug into whatever scenarios we consider. Some disadvantages wouldn’t so much as raise an eyebrow (e.g., producing a minority female child) while others would be controversial (e.g., Down syndrome, which some argue shouldn’t be ‘cured’), and yet others would clearly be egregious affronts to humanity (e.g., a deaf-blind-limbless child in chronic pain). It’s not obvious exactly where deafness falls on this scale; perhaps in the lower-middle of controversial.

With that in mind, contemplate also the following cases:

…in which a deaf heterosexual couple want to increase the probability of having a deaf child, and so seek an outside sperm donor. This seems more clearly questionable than the same-sex couple doing so, but why?

…in which a hearing heterosexual couple decide they’d like to have a deaf child, for what they consider to be beneficent reasons, and so seek deaf-friendly sperm. This seems an even clearer case of a moral misstep than the above cases, but, again, why? Do we feel intuitively that parents have greater reproduction license so long as their offspring are more like themselves?

…in which two gay deaf men successfully sire a deaf baby by engaging a deaf surrogate. Does the couple’s sex make a difference in terms of how our intuitions respond to the case? Would this story have received even more critical attention had the parents both been men?

…in which, you get the idea…


(3) To whom are we referring when we talk about the effects of reproductive choices?

Had those parents chosen a different sperm donor, they would not have had the children they had. So, we can’t say that these children have been disadvantaged in the sense of something having been done to them. That is, we can’t say that, had this couple not sought deaf children, these children would have been born with audition.

Consider it this way. When Charo, the aforementioned law/bioethics professor says, “I think it’s a shame to set limits on a child’s potential,” she can’t mean that the potential of these actual children should have been less limited, because she is suggesting that the parents should have chosen a different sperm donor, which would have entailed not giving birth to these children. The phrase could be more accurately worded, then, as “it’s a shame to intentionally produce a child with limited potential,” something I absolutely do not believe this couple did.

I note this observation in order to underscore the fact that, when we say that this couple should not have endeavored to have deaf children, we are also implying that they should not have created these specific children. I also wish to tease out a bit the vagueness of to whom we are referring when we talk about the beneficiaries (or maleficiaries) of a couple’s reproductive choices. Are we referring to some nonexistent unborn person, or are we referring to the actual children the parents produced?


(4) How do we determine what count as ‘reasonably maximized advantages’?

I’ll take ‘reasonably advantaged’ to mean simply that one possesses roughly the same endowments and capacities as the average person in his or her society. ‘Maximized,’ then, should elevate this at least a little beyond average. As Charo points out, we generally take parents to have an obligation to their children to maximize the advantages available to them. I’m sure the parents in question consider themselves to have done just that.

Parsing this out, however, would be extremely complex. Endowments and capacities for what? To successfully pursue one’s life ambitions? Surely a confident and gifted deaf child would be in a better position to do this than would be an insecure child with five senses and average gifts. It seems that these parents felt more sure in their ability to nurture the capacities of deaf child than those of a hearing one.

Also worth noting is that there is a thriving and supportive deaf community, who consider deafness to be more of a cultural identity than a disability. These parents are members of that community, and naturally want their children to be as well. Indeed, I’ve seen it pointed out by multiple sources that deaf couples often want deaf children, but leave it to chance; those couples, of course, are usually heterosexual.

At any rate, that community, though it constitutes the society these parents know best, still operates within a broader society in which hearing is the norm. Also, there being a community doesn’t mean that it’s morally permissible to produce children who meet the membership requirements for that community. Along these same lines, just because a feature constitutes a part of one’s identity, does not automatically make that feature desirable. Note, too, that this particular community exists in large part because deafness is treated by the hearing world as a disability; I’m not sure what this observation reveals, but it’s something to contemplate.

I’ll leave this here in order to move on to another difficulty with reconciling the ‘reasonably maximized advantages’ principle: How far do we expect parents to go? Consider:

Should parents take DNA tests to work out the probability of their producing disadvantage-prone children?

Should parents screen zygotes and fetuses for potential issues and then either correct or abort?

Should parents, once the technology becomes available, opt for the genetic enhancement of their children whenever possible?

Should parents thoroughly educate themselves on, and follow, the latest social science research about indicators for success? For example, it’s been noted that a person’s name can be a predictor of success. But wait, what do we mean by success? Do we mean economic success, or something deeper and more existential than that? The former is usually taken to be the standard signifier of a happy person in our capitalist culture, even though it’s now understood that the more well off are at least as likely to commit suicide as the least well off, if not more so. Consider also that Haiti, one of the poorest countries in the world (and capitalist, by the way), has one of the lowest suicide rates in the world.

And, here in the U.S., 2001 statistics indicate that 22,328 white males committed suicide, while only 330 black females committed suicide.

Having considered all this, one conclusion we can draw is that ‘advantage’ is context-dependent and subjective. Which leads us to the next question…


(5) To what degree, if any, can we measure the success of the parents’ choice?

We generally expect our ‘right or wrong?’ answers to correlate with good or bad effects in the world. How do we measure such a thing in this case? One way might be to ask the children themselves how they feel about it. Let’s consider this. We would need to ask: “Would you prefer that your parents hadn’t sought out your biological father as a sperm donor, so that you wouldn’t have been born?” Not a promising line of questioning.

Perhaps we could take a less blunt approach, and give the children the same sort of life satisfaction questionnaire we’d give traditionally advantaged children. Although, it doesn’t take an expert to surmise that the deaf are just as likely to score well or poorly on these as are the hearing. In fact, the literature I’ve encountered reports deaf people as having greater life satisfaction, in large part because of the psychological resources available to them, such as the aforementioned strong community. Still, these children are likely aware of their parents decision, and so might live with it as a source of dissatisfaction that other deaf children don’t bear.

But when, exactly, should such a questionnaire be administered? At the age of five? Sixty-five? Every year, and then averaged out? (Definitely not.)

Also, however these children respond to a questionnaire, we can’t be sure whether we should put the blame or praise on the parents’ reproductive choices. We certainly don’t generally go around judging other people’s reproductive choices based on whether or not their children are happy. And it seems that life satisfaction and self-esteem, at least in younger people, tend to be more rooted in parenting style and social circumstances rather than in reproductive choices. Though, of course, the same parents often produce both well- and maladjusted children.

Furthermore, happiness may turn out to be an incoherent idea that isn’t all it’s cracked up to be. We surely don’t consider acts to be permissible so long as they end in happiness, even great happiness. Imagine: Bill wants to give Sarah the happiest day of her life. Bill kidnaps Sarah’s child, waits a month, then anonymously returns the child. Sarah, through streaming tears of joy, announces that this is the happiest day of her life. This is a happiness Sarah never would have wanted. You get the point.

Vesna Jovanovic - Pulse-Echo Principle

Pulse-Echo Principle, by Vesna Jovanovic

Finally, we can’t know what the children’s lives would have been like had they been born hearing, so it’s not like we would have anything with which to solidly compare their questionnaire results.

So, it seems we can’t use self-report of life-satisfaction or happiness as a measure of whether these parents have made the right choice. What next?…


(6) What if the child could have been given the choice?

Suppose that these children had been born hearing (despite the sperm donor’s genetic history), and had been given the choice at age eighteen to active deafness, perhaps via a simple on/off switch installed into a chromosome before birth.

Clearly this is absurd, so I mean it expressly as a purely hypothetical thought experiment. Bear with me, though, and contrast this with the not absurd analog of a congenitally deaf adult opting to eliminate his deafness (though, to be fair, not all deaf people want to be ‘cured’).

It seems to me that our contrasting intuitions about these cases signal a potentially difficult challenge to the choice these parents made. Indeed, my guess is that if deafness could be eliminated in all cases in a matter of a few painless seconds, the vast majority of deaf people would opt for it. That of course is an empirical question that we can’t yet answer.

If it did turn out that most wouldn’t opt for it, I think I still wouldn’t be convinced that those who’ve never heard a lover’s whisper, birdsong, a Randy Rhoads guitar solo, ‘silence,’ the snap of a camera shutter, the roar of Godzilla, popping popcorn, or my dog howl-barking at 5:00 am (wait, scratch that one) simply don’t realize the richness of what they’re foregoing. But that’s my bias.

At any rate, it turns out that the case in question does involve some post-natal choices, to quote the Guardian article:

Doctors have warned the couple that Gauvin’s vestige of hearing in his right ear is likely to get worse and advised that the boy be fitted with a hearing aid to help him develop a basic understanding of speech. The parents declined, saying they would leave the choice to the boy when he gets older.

They gave the same choice to their daughter Jehanne, who wore a hearing aid for just a week. They also left it to her whether she should attend speech therapy, which she does.

Obviously the parents are involved in these choices to some degree or another. Leading us to our next question…


(7) Do the education and experience of the parents make a difference?

According to reports, both parents are mental health specialists and deaf therapists, and one of them is a credentialed medical ethicist with experience in the field. So, they’re surely well aware of the factors involved in this case. Indeed, they’ve expressed that they could be better parents to children more like themselves, who grow up speaking their language, and so on.

At the same time, other deaf adults have gone on record rebuking the decision. And producing a child whose easier to parent seems at odds with the selflessness we usually expect of parents. Furthermore, being an ethicist doesn’t mean you’ll always choose the superior moral act, and we certainly wouldn’t let someone off the hook for a crime because he’s an expert.

Let’s suppose, though, that the couple utilize their knowledge about the factors involved to convince us that they are within their rights to enlist a deaf-friendly sperm donor. Should other couples be denied that right due to a lack of education and experience? For example, would the heterosexual couple in which the male has deaf-friendly sperm be required to seek a hearing-friendly donor? How far should this sort of thinking extend? Should couples in general have to petition for the right to reproduce based on factors predicted by DNA screenings, socio-economic status, education, intelligence, and so on?


(8) What if the outcome had not been left to chance?

Though the donor had deaf-friendly sperm, there was still a chance that their children would have been born hearing. Does this make a difference in how we feel about the case? Let’s consider four stages of intervention, ranging from morally questionable to morally out of the question:

(i) Pre-conception, in which reproductive materials would come genetically engineered to ensure deafness. This is a complex question, because, were such technology to be accessible, there would be all sorts of other questions to deal with as well, such as what other attributes could be included in those reproductive materials (e.g., sexual orientation; eye color; cognitive capacity; et al.). But let’s set that complexity aside and presume that we’re talking just about being programmed for deafness.

Our intuitions might tell us that genetic engineering is unnatural, and that there’s some merit in leaving things at least somewhat to nature. We might even suspect that the parents in this case get some comfort from knowing that nature went along with their plans, was on their side (even though one also gets the impression that they would have gone with an even more certain method if they could have).

Ultimately, though, that which happens ‘naturally,’ whatever that word even means, should not instruct our moral evaluation of cases, lest we commit fallacies such as the Appeal to Nature. Consider, too, that there are plenty of instances where disrupting nature is the unquestioned norm. Indeed, to remove a cancerous tumor is to intervene on a naturally occurring process. So, the permissibility of an action has nothing to do with its so-called ‘naturalness.’

The upshot of this is that there is no significant moral distinction to be made between ‘designing’ a child by screening potential mates’ genetic history, and producing essentially the same child through genetic engineering.

(ii) Pre-fetal, in which there is deafness-ensuring genetic modification performed in the earliest days after fertilization. I put this in essentially the same category as (i), because there is yet no fetus.

(iii) Fetal, in which a procedure is used to physically disrupt auditory development, thus ensuring deafness. This seems a step too far. But why should we feel any differently about this scenario than we do the previous ones? What’s the difference between making a change in genetic material to achieve an end result, and simply manually rendering that end result? I’m not convinced there is much of one, but let’s consider.

In the case of sperm donation, and in (i) and (ii) above, there is no intervention, given that deafness isn’t being done to an existing being. But in this scenario it is, especially with a more developed fetus. By about 16-20 weeks, you’ve now got a hearing being from whom (or from which; I’m not touching prenatal personhood here)  you’d be taking something big. That’s got to be impermissible, right? But, if the the parents are convinced that it’s what’s best for the child and family, should they not do it? If not, does this shed any new light on our pre-fetal cases?

(iv) Postnatal, in which the young infant is made deaf through surgical intervention (e.g., removing the eardrums). This seems unambiguously wrong. For one thing, there is clearly something significant taken away from the child. Namely a powerful tool upon which the infant already relies for engaging the world. Hearing starts in the womb, and along with it, apparently, the learning of language, and sensitivity to music. One can imagine far-reaching and potentially traumatic implications of taking that tool away. But even if none of this were true (indeed, it may turn out that the implications are no different here as in (i) and (ii), so long as the deafness is prelingual), removing a child’s eardrums would still seem very, very wrong.

Again, though, if a child’s parents were to determine that what’s best for that child is some physiological state of affairs that could be easily and painlessly achieved through surgical intervention, then it seems to me that those parents would be obliged to initiate such a procedure. I know that if I had a child who was born deaf, but a simple procedure would result in audition, I would opt for the procedure.

With this in mind, I again ask: Does our intuitive response about postnatal intervention tell us something important about how we should view the pre-fetal cases?


(9) How does technology play into all this?

Technology was touched on in (8), but let’s briefly elaborate. One important question is: Is there a significant difference between genetic engineering/modification, and choosing a mate (consciously or unconsciously) based on apparent, known, or discoverable genetic facts about a person?

Perhaps laboratory intervention is, at least in some ways, more controlled and thus easier to regulate. I don’t view this difference to be very morally significant. There are, however, some rights-based concerns worth noting. For example: The cutting edge of such technology wouldn’t be available to everyone, and would thus result in ever-widening gaps between the extra-advantaged and the disadvantaged.

We don’t have space to get into this here, but I will point out that, in the end, this result is not significantly different from what already happens ‘naturally.’ People of high social status (e.g., the rich, highly intelligent, and beautiful) are able to be pickier in choosing their mates. Furthermore, cutting-edge life-enhancing technology has never been available to all, nor do we expect it to be. For example, I have healthcare (which I consider to be a right), but this doesn’t grant me access to the most advanced medical technology in existence. But that technology should exist, and should be utilized and further developed. It will be tomorrow’s affordable norm.

Other questions to consider are: What would be the effects of everyone using such technology (i.e., leveling the playing field of intelligence and talent)? When should genetic intervention be germline (i.e., become part of the genes that will be passed to the next generation) or somatic (i.e., restricted to the individual instance)? And so on. But that’s getting deeper into the biotechnological debate than we need to go. For a little more on this sort of discussion, see my article, The Genetically Modified Guitarist: Genetic Enhancement, Musical Experience, and the Good Art Gene.


(10) And finally, what do we do with this information?

Suppose that, though we may fail to agree upon the moral status of this case, we decide that there should be some sort of regulation in place to evaluate its permissibility, as well as that of similar cases, in practice. Would this case be permissible?

Whatever answer we come up with, it should, at least ideally, apply to non-donor situations as well. Put it this way: It would be absurd for a donor-seeker to be able to circumvent rules of prohibition by simply having sex with a prohibited donor.

This leads us to ask: How on Earth could such a thing be regulated and enforced without oppressively deep invasion into our private lives? I don’t think it could be. Certainly the current picture of reproduction rights, in which we have the right to mate with whom we wish, would be out the window.

Strictures on consensual sex between adults are, of course, not absent from our history. The U.S. currently has incest laws and, in bleaker days, there have been racially motivated anti-miscegination laws. Such laws are difficult to maintain and enforce (for reasons I don’t have space to explore here), though neither involve the extraordinary level of complexity that we would face in attempting to regulate mate-selection according to ethical concerns about genetic compatibility.

Case in point. Some countries have laws that put a very low cap on the number of children that can be sired from an individual donor’s sperm, apparently for the sake of reducing the chances of unwitting inbreeding (I wonder if Ismail Ibn Sharif, who reportedly sired 867 children, ever had this worry). But, of course, these laws don’t extend to siring children via intercourse, even though the same danger exists with greater probability among the non-donor population.

Obviously, nobody in their right mind would clamor for such regulations in practice. But I emphasize these points in order to bring attention to the fact that, as long as the integrity of an act’s conceptual architecture can’t survive real-world practices, we will live according to absurdly administered and unfair laws. Perhaps we should just accept this, given the seemingly impenetrable inscrutability of the conceptual. Or, we can face that inscrutability head on and, even if we can’t dissolve the absurdity, maybe we can learn to better adjust for it. I think you know which option I’d vote for.

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Conclusion:

I don’t know what to say about the moral status of this case, though my goal here was less about assigning a moral judgment, and more about endeavoring to glimpse the complexity that would come with attempting to do so, while also considering how our responses might inform debates surrounding reproduction rights and genetic intervention in general.

That said, my gut, which can’t help itself, sways in favor of the parents at the very least having been within their rights to mate with the consenting adult of their choosing. In doing so, right or wrong, they have not acted significantly differently than most other couples.

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Dan Jacob Wallace

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