Tuesday, June 27, 2006

Playing Gods

Minette Marrin has an interesting commentary at the Times Online this week about the new embryo screening technique that's been recently approved in the UK. It applauds the use of the technique, pre-implantation genetic haplotyping, which will allow the detection of "nearly 6000 diseases and conditions."

The technology itself aside, there are some pretty serious problems with this particular article.

Marrin starts out by saying that "Nature is astonishingly cruel. Science, by contrast, has the power of mercy."

Embracing new technologies with very little critical examination is as bad as rejecting them out of hand. I worry that Marrin commits the former sin, and here's why: in arguing for an all-out embrace of this genetic screening, she says-


This is indeed playing God, as all the usual campaigners were quick to point out last week. But what on earth is wrong with humans playing God? I am all for it, especially as God doesn’t seem to be doing it. Besides, whatever we may think about playing God and defying nature, we are doing it already and even though we don’t necessarily recognise it, we approve of it.

For instance, there are many people who in the course of nature would die before they were old enough to have children. They might suffer from inherited heart defects or blood disorders that would kill them if they did not get transplants or dialysis. They might have disabilities that would kill them as newborn babies, without intervention. If properly treated these people may well live to be able to have children and some of those children will be at risk of inheriting the same problems and, in their turn, may pass them down the generations.

Eugenicists might think, and used to say publicly, that this is bad for the gene pool. Yet hardly anybody, I imagine, believes that such people should be denied treatment.



Of course no one would argue that such people should be denied treatment. But comparing routine medical treatment with potential eugenics arguments seems... bizarre to me, at best. This new screening technology certainly opens up a place for the eugenics discussion once again, but it hardly seems that bringing adults receiving now-routine medical treatment into the argument, even for the sake of analogy, is a good idea. She's implying that since we are keeping more people alive with what she considers disabilities, we are already in the playing-god business. So, the logic appears to go, shouldn't we play god with those people's children, as well, since they bring a potentially larger risk into the gene pool? I really don't think the author intended to bring eugenics into the discussion by making eugenics arguments.

But the author's arguments get even more ill-advised:


Simone Aspis of the British Council of Disabled People said last week that she was opposed in principle to such screening on the grounds that it sent the signal that being born disabled was a bad thing. The mind reels. Over the years I have got used to the disability lobby talking in this spirit, so it no longer seems as absurd as once it did, but surely it must be obvious that it would be far better for a person not to have a disability than to have one.

[...]

To say that a disability is undesirable in itself is not to say that a person with that disability is undesirable in herself, or her life worth less than someone else’s. The disability is not the person. It is to say that her life would be better without that disability.



This is where I start to take (further) issue. "It must be obvious that it would be far better for a person not to have a disability than to have one." Not only do I not find it obvious, but I immediately want to know what qualifies as a disability. I realize there are some very obvious illnesses in which a child has a short, painful life full of suffering. The 6000 conditions that this test screens for are surely not all of that type. Who decides that X is a disability and Y isn't? As Anita Silvers has pointed out, things considered disabilities can be advantages in some situations (if someone in a wheelchair decides to race me on the street tomorrow, I'm going to lose!) I think we should add to that the fact that evolution itself works via random mutation, and we have no idea what will be beneficial in the future. I happen to agree (contra this author) that it is wrong to send the signal that being born disabled is a bad thing. It assumes that every difference is an automatic downgrade. I'm reminded of the child born in China recently with a fully functional third arm - which was removed purely because it was abnormal, and not because it was painful, or harmful, or promised a life of suffering to the child. (In fact, I would argue a third arm would provide a pretty serious advantage, speaking especially as a violin player!)

The author says that the life of someone with a disability would be better without the disability, and that such a claim passes no judgment on the individual whatsoever. Without being accused of being PC (which is absolutely not what this is about) I heartily disagree - the author is absolutely claiming that the individual is worth less because of the disability. If the life is not as good as it could be, our lives, the lives of "normal individuals," are better - we are better off. We lead better lives by this argument. How can the author claim that this is not passing a judgment on the individual?

What's even more interesting to me are the comments that follow the article. Many of them raise worthwhile points, too lengthy to examine here. But Jabir, from Singapore asks: "Also, if a couple cannot produce an embryo that passes the screening test without any diseases, should they be deprived of having children?" Of all of the problems this technology creates, this comment is the best illustration of two: the problem of individual choice and the lack of public understanding surrounding new technologies. While both of these are blog entries unto themselves, these things are all bound up together inescapably. No one is (or should be) demanding that every couple use this technology. Perhaps that would be truly playing god, and that's one more god I could do without.

Cross posted to hyper-textual ontology

10 comments:

Tom FitzGerald said...

Robin!

This was well worth the wait.

A few (off-the-cuff) thoughts:
1) You ask who will decide that X is a disability and Y isn't. I know you were just grabbing algebraic letters here, but it reminded me of how in some cultures, people are already screening their children based on whether they have X or Y chromosomes from their fathers on the assumption that, more or less, X is a disability.
2)Other differencs that might be eliminated unless more care is taken are deafness, depression, and homosexuality.
3)What a travesty, taking that kid's extra arm away.
4)While I think the argument you cite here is indeed problematic, I've always thought a decent t-shirt slogan could be made of "If we don't play God, who will?"
5)How to adjudicate ethical conflicts between procreative benificence and the right to have children? I.e., is there ever a scenario (incest comes to mind) where the disabilities produced in offspring would be so severe that it would be unethical to have children? (Not illegal, just unethical).
6)Speaking of incest, if an incestuous couple can prove with genetic tests that the child they want to produce is free of any problems due to their consanguinity, should they be allowed to proceed with their plans?

All of these are inchoate responses, often recapitualiting stuff discussed elsewhere. Still, I did want to respond to a great post. More coherence soon, I hope.

Doctor Logic said...

Hi Robin,

I'm afraid I don't agree with the spirit of your post.

What are the actual risks with this technology? Well, from a human survival perspective, there's the risk that genetic similarity might make us more vulnerable to pandemic. Beyond this, it is hard to see much in terms of an existential risk. Even then, then if we ask folks how they feel about human existential risks, most people don't care. You don't see demonstrations in the streets calling for asteroid defense, or greater investment in the CDC. I do care, so I think this is something to watch, but I'm not concerned yet. There are much bigger existential fish to fry.

Then there's the issue of social conformity. It is true that a side effect of the elimination of what some consider "birth defects" may stigmatize those who are born with those "defects". However, you are calling for the end to a good (elimination of "birth defects", designer babies) on the grounds that you don't like a possible side-effect (stigmatization). However, the same argument can be applied to all sorts of things, like sex out of wedlock. We don't like unwanted pregnancy and STD's, so let's ban sex out of wedlock. This seems like an, um, shotgun approach to solving problems. I say, let's keep the good (the sex) and eliminate the bad (unwanted pregnancy, disease). There's no need to throw the designer baby out with the bath water. If we don't like stigmatization, fight stigmatization, not those things that might result in stigmatization.

I'm not certain that removing that Chinese boy's extra arm was a mistake. I'm not sure how such questions should be settled. Should it be settled by comparing best outcomes either way? And on what basis? By the boy's feelings in later life? It seems to me that things could go either way. He might have grown up to curse his parents for allowing him to grow up with an unusual morphology, or he might grow up to regret his parents' decision to remove the arm. I tend to think that the latter is far less likely. So, who is being helped by leaving the arm intact?

There were a couple of other things I wanted to speak to.

Do I think deafness is a disability? I sure do. Do I think my inability to see into microwave and UV is a disability? Yup. If I could exchange my body for, say, Pamela Anderson's, would I? Yup. I don't see a problem with people making decisions for their children that they would have wanted their parents to have made for them. I don't think that would result in a world populated exclusively by supersensory Pamela Anderson clones. I can look at relatively disabled people and thank my lucky stars that I'm not equally disabled. Yes, I'm passing a judgement on such people. No, that doesn't mean I don't have to treat those other people with respect.

Finally, might the law mandate designer babies? I don't see this happening any time soon. Procreation is regarded as a fundamental human right. That is, almost no one regards themselves as bound by a social contract that would prohibit their procreation. Today, citizens don't even require prospective parents to take a parenting class, let alone actually pass one.

Here's hoping that this will all be moot in the future when we can augment ourselves at will.

Robin Zebrowski said...

"However, you are calling for the end to a good (elimination of "birth defects", designer babies) on the grounds that you don't like a possible side-effect (stigmatization)."

I'm actually not calling for an end to it at all. I was intentionally silent on that point in the post because I wanted to argue against the author and her completely uncritical embrace of the elimination of difference. In my opinion there is an enormous difference between a good use of this technology (which I think it's hard to deny exists) and a really bad use (which I think her argument calls for).

Re: deafness as a disability - you might want to consider all the things that come out of the deaf community that would never have existed had there never been deafness. Sign language, cochlear implant technology, etc. Calling deafness a disability, to many (not all) deaf people is the equivalent of calling blackness a disability to a black person. I can't understand why people think that we should all have identical capacities when it is only the differences that make communities possible.

Dale Carrico said...

"Playing God" is an argumentative conceit that has always perplexed me. Even as a crusty atheistical type I can see how for some good people it appears to be morally helpful to emulate a notion of God, just as I can see how for some mystics/aesthetes it appears to be edifying to contemplate a notion of God. But it's hard for me to get a handle on what it means to "play God," exactly, except in the vacuous sense that presumably humans have been "playing God" at least since the invention of fire... that is to say, in the sense of unleashing novelty in the world without certainty about consequences.

In this sense, everything to do with culture is "playing God." And since human beings are ineradicably cultural beings, then any notion of stalling or disinventing or otherwise disentangling ourselves from culture would seem exactly equally a matter of "playing God," surely. So, if humans are "playing God" no matter what they do (no real surprise to my mind, since it seems to me humans pretty much make their gods in their own image anyway), I suspect it would be better to table that claim altogether as one that should influence our sense of the stakes at hand in making particular decisions about the usefulness and riskiness of new tools.

That out of the way, I agree pretty emphatically with most of your points in this post, Robin.

First off, I so strongly agree with you that it's socially harmful to describe a particular person's morphology as embodying "disability" that I think we should all strive not to use the phrase at all. All people are differently enabled, period.

Second, I think access to knowledge invigorates democratic societies and so I champion knowledge over authoritarian secrecy and censorship every time. If genetic screening gives women more knowledge to make informed decisions about processes taking place within their bodies then I am always for it, whatever the probable consequences. I agree that in patriarchal societies it is likely that parents will screen for the sex of their children in ways that reflect this sexism, just as homophobic societies will screen for queers like me. My job as someone fighting for the rights of women and queers and for their proper standing in the world is to fight sexist and heterosexist laws, stereotypes, notions as such, not to limit the rights of women to knowledge about their bodies that impair their ability to make the decisions they want to. To claim to fight sexism through the sexist limitation of a woman's right make decisions about her bodies as she sees fit on the basis of whatever available information seems to me wrongheaded.

Third, and this is a point related to the last one, I don't understand why a particular form of differently enabled morphology likely to get freighted with "stigma" always mobilizes first a project to adjust an otherwise functional body rather than a project to adjust the dysfunctional society itself. This is why your discussion of Anita Silvers' great arguments here was so good -- morphological diversity represents a diverse resource of capacities, knowledges, alternative lifeways which render a society more adaptable, more responsive to diverse circumstances, provide a richer terrain of possibility for the expression of freedom, and so on. Limiting its recourse to such diversity is clearly dysfunctional, and seems to me to symptomize unresolved insecurities, tensions, contradictions elsewhere that probably need to be identified and redressed urgently and directly on their own terms rather through distorted symbolic proxy battles uselessly and interminably worked out on the suffering bodies of vulnerable citizens.

Fifth, while it is true that imposing certain traits on a child should be regarded very properly as abusive and should be prohibited on that basis, I do think that truly valuing diversity requires a standard that is incredibly generous about acceptable differences and very wary of identifying differences as harms.

My own sense is that consent is the key to the dilemma at many different levels:

[1] We should always politically approve differences that arise out of a scene of informed nonduressed consent (so long as these accord with established law).

[2] We should strive to secure the scene of informed nonduressed consent, and hence a global culture of consent, wherever possible. The commitment to consent -- if it is to be subtantiated rather than vacuous or pro forma as happens in some libertarian and civil libertarian commitments to negative liberty -- imposes some real, and definitive, social and cultural costs. One my view, it demands the defense of consensus science, universal access of knowledge, and the implementation of regimes to ensure that acts of consent are adequately informed and as expressive rather than tacit as possible. And it also demands the provision of a basic guaranteed income and universal healthcare (poverty duresses consent in the real world) and a palpable celebration of diversity (to limit the force of humiliation and social stigma, which also duress consent in the real world).

[3] This commitment to the scene of informed, nonduressed consent also defines the standard by means of which we distinguish the politically acceptable (even if immoral) diversity of decisions parents and guardians might make with respect to their children's healthcare, education, upbringing, and so on from decisions that are abusive and hence demand intervention. Citizens who will participate in scenes of informed, nonduressed consent must be prepared for its demands upon adulthood.

There is nothing about screening for deafness or maleness before bringing children to term, having a functional third arm or intersex genitalia, living through an evangelical Christian or militant atheistical upbringing that renders the scene of informed, nonduressed consent inaccessible to the person exhibiting these traits. One can argue about relative impairments and preferences, but these will be moral rather than political arguments and different consequences do and should prevail when one shifts from politics to morals. Hence, the commitment to a culture of consent will usually be better served by defending the consensual childrearing scenes of parents and their responsible partners -- who in general have both firsthand knowledge and the best interests of children at heart and who would not harm them even when we disagree with them about what their choices about upbringing make better available or less available to children so raised -- that eventuate in these differences rather than disparaging or otherwise discouraging them.

Over the longer term, the commitment to the scene of informed nonduressed consent should inspire research and development to insure that as much morphological diversity as possible is susceptible to modification such that, say, offspring could make subsequent consensual recourse themselves to genetic, prosthetic, and cognitive modification to transform the circumstances with which they have been saddled by their upbringing. But here we arrive at what is, after all, a nearly universal condition. We are all of us coping in some measure with the consequences of just how badly our parents managed their parts when they decided to "play God" and bring us into the world in the first place.

Dale Carrico said...

Doc Logic says:

"Do I think deafness is a disability? I sure do. Do I think my inability to see into microwave and UV is a disability? Yup. If I could exchange my body for, say, Pamela Anderson's, would I? Yup. I don't see a problem with people making decisions for their children that they would have wanted their parents to have made for them. I don't think that would result in a world populated exclusively by supersensory Pamela Anderson clones. I can look at relatively disabled people and thank my lucky stars that I'm not equally disabled. Yes, I'm passing a judgement on such people. No, that doesn't mean I don't have to treat those other people with respect."

There are ways you could mean this that I would agree with, and ways you could mean this that I would disagree with.

When you say, "Do I think deafness is a disability? I sure do."

Do you mean, "I would rather be hearing than not"?

If you mean the latter then of course I agree with you that there is nothing objectionable in your preferences, neither is there anything necessarily damaging to democracy in voicing such preferences. There is a key difference between an evangelical Christian who thinks it's a shame that an atheist like me will probably go to hell and one who who thinks an atheist like me shouldn't be allowed to testify under oath in a Court of Law.

One of the key problems about "disability" discourse for me is that it speaks the scientific language of medicine. Warranted scientific beliefs satisfy criteria that make them good candidates for at any rate provisional consensus given the current state of knowlege. In this they differ deeply from moral beliefs which tend to be about membership in particular communities distinguished in their definitive differences from other communities.

I worry about what happens when moral beliefs that testify in fact to one's membership or not in moral communities, take up the superficial forms of scientific claims that solicit rational consensus. The solicitation of such consensus tends to provide a rationale for and thereby presage public intervention in the name of general welfare once we move into the political arena.

I'm not certain, but I suspect you agree with me on this?

Doctor Logic said...

Dale,

I think we basically agree. I'm not setting myself apart as morally superior to the hearing-impaired.

I have to admit to being uncomfortable with using "differently enabled" in place of "disabled." If you're not going to distinguish between differently enabled in a good way and differently enabled in a bad way, the replacement seems silly.

Instead, I would suggest applying the word disabled to a broader group of people. In fact, I suspect that that everyone could be considered disabled in one way or another. In terms of appearance and fashion sense, I am, at the very least, challenged. I'm also somewhat empathically disabled and work-ethic disabled. This way, people can see disabilities for what they are, and still empathize with the disabled.

Doctor Logic said...

Robin,

I'm actually not calling for an end to it at all.

Sorry. I may have made an unwarranted inference.

Re: deafness as a disability - you might want to consider all the things that come out of the deaf community that would never have existed had there never been deafness. Sign language, cochlear implant technology, etc.

We are always going to have challenges. Even normal humans are just souped-up monkeys. We can look back with pride at the challenges we have overcome, but that doesn't mean we shouldn't regard our former selves as being disabled.

Once space-faring capability has been built-in to my construction, I will regard my present self as profoundly disabled.

Calling deafness a disability, to many (not all) deaf people is the equivalent of calling blackness a disability to a black person.

All things being equal, a deaf person has less ability than a hearing person. All things being equal, a black person has equal ability to someone of a different race. The two are not the same.

Of course, for better and for worse, all things are not equal, but that's another story. :)

AnneC said...

All things being equal, a deaf person has less ability than a hearing person.

Are you referring to a situation in which two people have equal ability in every respect, aside from the fact that one of them can hear and the other cannot?

If so, I would potentially agree that the deaf person has "less ability" or perhaps more accurately, fewer abilities. The thing is, human beings are not that simple. We vary dramatically from one individual to the next. If you take any two humans, it is likely that both will have some abilities the other does not. Hearing is only one of many possible abilities a person might possess (or not possess). Plenty of deaf people go through life without feeling that they are suffering or missing out on anything. Some of them may wish to undergo treatments that allow them to hear, while others may not, and I would be very worried about a society that forced compulsory modifications to people for any reason other than that of saving their lives. Whether an outside agent considers deafness to be something they would not appreciate is immaterial; the fact of the matter is that abilities should not be compulsory.

When it comes to embryonic selection, the question gets trickier since obviously an embryo cannot express consent or make a decision. In the case of congenital deafness, I think the issues become much more complex. I do not think that governments ought to force potential parents to abort or destroy deaf embryos, but neither do I think that governments should force anyone to bring a child into the world, for any reason, period. Individual freedom is really the issue here, rather than whether someone may or may not suffer for their characteristics or whether they will be born with the best possible set of "initial conditions".

I would also argue that there are certainly some cases in which certain states of being confer advantages not accessible to other states of being. As a person on the autistic spectrum, I could very well go around feeling sorry for people who cannot appreciate visual details the way I do, or for people who can't seem to settle on a few strong interests but who instead bounce around from one thing to another, never getting much more than a superficial overview of anything. But I don't do that -- I think that people are perfectly capable of making their own decisions as to what is important to them and what abilities they deem necessary to have a satisfying existence. There are, perhaps, different but equally valid modes of being and I think that people need to be very careful in assuming that more = better in terms of abilities.

I don't think that having Asperger's means I have a net deficit of abilities and that every nonautistic person I meet is automatically starting with a better set of initial conditions than I am. Yet in thinking this, I am in no way suggesting that I don't ever want to improve or change. If I could choose not to be nearsighted all of a sudden, or not to have seasonal sinus allergies, I'd most certainly jump at the chance! But I have no interest in any sort of "treatment" that would make me susceptible to "charismatic" body language and tone of voice, nor would I want to be modified so as to become more extroverted or so that my senses were dulled.

I do agree that in the future we will look back on our past selves as limited in many ways, but in the present we certainly ought to have the freedom to evolve as we choose and please, rather than on the basis of whether someone else thinks we are "suffering" or whether some governing body or policy thinks that a person needs to have one particular ability set in order to have a valid existence. The key concepts here are personal choice and the ability to express informed consent.

Doctor Logic said...

nydra,

I agree with you when it comes to choice and informed consent.

What we are looking at here is a special situation. Here we have advocates for adults with disabilities who want to infringe on the rights of prospective parents to do what those parents see as best for their own children. And why do these advocates want to infringe on these rights? So the disabled won't suffer some supposed amplification of social stigma?

By all means, remedy the stigma, but don't harm parents who seek the best possible life for their children. Imagine, say, a fine arts painter being told by the state that he must conceive a blind child. That child might grow to be a happy, functioning adult, but one who may never know the beauty of the visual arts. The child may not recognize the loss. The parent will.

If I read your response correctly, you agree with me.

BTW, I use the term disability because, as a group, the disabled are defined by not having a certain ability. Differently-enabled doesn't really work for me because everyone is differently-enabled. Albert Einstein was differently-enabled.

AnneC said...

I agree that the government shouldn't infringe on parents' rights, however, I think we need to be very careful about potentially infringing in the opposite direction.

For instance, parents must be protected against pressure from doctors (or outright legislation) to abort certain types of babies or only select embryos that do not carry genes associated with deafness, autism, etc.

The idea of an authority dictating what characteristics a person must have (or not have) in order to be worthy of life is apalling to me.

You speak of "parents who seek the best possible life for their children", but how does one determine what the "best possible life" is?

What if a parent found it delightful to have lots of friends and attend many parties? They might be compelled to select for an extroverted child.

But a parent with lots of fascinating indoor hobbies and a love of reading might select for an introverted child on the basis that if the kid spent all their time gabbing and gossiping, they'd miss out on a lot of the richness of learning.

Both cases represent a constraint, and both cases represent an enhancement. And both cases represent a case in which the resultant person will experience depth and richness in some areas of life at the expense of others.

Yes, promote and protect reproductive freedom -- but at the same time, be cogent of the fact that what looks like a loss or deficit to you might actually be a strength in some situations.

Of course we don't want the state telling people what kinds of children they must have, but at the same time, I don't think the state should insist that parents refuse to give birth to children who aren't "perfect". We don't want to make it a "crime against humanity" to bring a nonstandard child into the world.