Wednesday, August 23, 2006

Pre-Implantation Screening And The Valuation Of Disabled Individuals

In the comments from my previous post Ampersand raised an interesting question that I think merits further examination:
If we don't believe that nondisabled people are, in some sense, more valuable people, then why is it worthwhile to use medical technology to make it less likely that disabled people will be born?
It's a worthwhile question to pursue, but I'd like to narrow the scope a bit. Rather than focus on "medical technology" in general I'd like to focus specifically on pre-implantation screening, as this technology avoids the complication of having to abort a pregnancy already in progress. To paraphrase Ampersand, the question then becomes:
If we don't believe that nondisabled people are, in some sense, more valuable people, then why is it worthwhile to use [pre-implantation screening] to make it less likely that disabled people will be born?
My first observation about the question is that it asserts, as an implicit assumption, that the act of choosing not to implant an egg with genetic abnormalities is necessarily a commentary on the value of disabled people. I will acknowledge that it most certainly can be, but are there other considerations apart from the relative valuation of able/disabled which might lead a potential parent to choose not to implant an egg? One consideration which arises immediately to mind are the desires of the person that the egg will one day become. A parent, confronted with the choice to implant or not to implant, is acting as a decision-making proxy for this individual. Would that person, presented with the same choice, choose to be born disabled? Note that the answer to the question depends on context: the nature of the disability, the greater society in which the disability occurs, ability/disability status of the parents, etc., allowing for the appropriate level of nuance required in answering such difficult questions. Now, in that context, does a decision not to implant (i.e. a decision not to be born disabled) de-value the lives of existing persons with disabilities, or is it a morally neutral expression of personal choice? I'm trying to come up with an appropriate framework in which to analyze that question at this time; I will think on it more and write later. Another possible consideration are the resources required to raise a disabled child. If a parent doesn't have access to the appropriate/sufficient resources and decides not to implant the egg, does this decision devalue existing persons with disabilities? In this case I'd argue the opposite; the recognition by a parent that they lack the resources to provide a disabled child with the dignity and opportunities which it deserves would seem to be an explicit recognition of the value of disabled individuals. Conversely, raising a disabled child with insufficient resources seems to devalue the child and, by extension and example, disabled persons in general. The above two examples cast doubt on the assertion that choosing not to implant an egg necessarily reflects a valuation of abled persons over disabled persons. But, while we are on the subject, I'd like to more explicitly explore the issue of the valuation of disabled individuals. It seems to me that the elephant in the room is the fact that there are relative advantages to having all of your limbs, senses, etc. We can (and should) make accommodations for those who don't, but that doesn't negate the fact that its really convenient to have both of your legs. The $65k question, then, is whether acknowledging this fact devalues disabled persons? It would seem to me that you can acknowledge that someone's body is sub-optimal and still treat them as a human being with all the rights and responsibilities thereof. This goes back to my previous (admittedly flippant) comment about getting rid of the polio vaccine. The intention of the polio vaccine (and many other aspects of medicine) is to prevent people from becoming crippled. However, if we accept that such treatments are appropriate then aren't we also showing a preference for ability over disability? Being more direct still, what about medical procedures to correct congenital abnormalities? Do we tell the young girl with scoliosis that she doesn't need surgery because she's fine just the way she is? All the time? In every case? Even when she wants to be able to play soccer with her friends? Is it apparent what I'm trying to get at here? The notion that there is an equivalence between ability and disability isn't born out by our actions in the real world. Nor is it necessarily the case that acknowledging our preference for ability requires us to look down upon or deny the full personhood of disabled individuals. In which case the question "to implant, or not to implant" is most likely morally neutral. Questions, comments, flames?

10 Comments:

Blogger ballastexistenz said...

The trouble I see in a lot of these arguments is that they talk about "that person" (when speaking of two or more embryos, fetuses, whatever) as if one is interchangeable with another. A non-disabled person probably wouldn't choose to be born disabled, but plenty of disabled-from-birth people wouldn't have chosen to be born non-disabled. Disability is not the inherent and total negative experience that most non-disabled people make it out to be. Moreover, even if that were true, you're not really choosing "lack of disability" over "disability" in the same person, you're choosing to birth "a non-disabled person" over "a disabled person," so you're throwing the entire person (or potential person if you prefer) out because they have one characteristic you deem to be less desirable, and choosing another entire person (or, again, potential person if you prefer) out because they don't have that one characteristic.

8:51 AM  
Blogger ballastexistenz said...

Which, by the way, is why neither your scoliosis analogy nor your polio vaccine analogy work.

The closest analogy with polio, for instance, is not the vaccine. It's to the idea of seeing which children get polio, disposing of them (in this hypothetical example, in a hypothetical world, if you don't believe the disposing of embryos or fetuses to be killing then you can imagine some way of with a time machine retroactively making sure the children with polio never existed), and replacing them with entirely different children who do not have polio, because regardless of any other difference between the two people, it's better never to have existed to begin with than to have gotten polio.

8:57 AM  
Anonymous Ampersand said...

The trouble I see in a lot of these arguments is that they talk about "that person" (when speaking of two or more embryos, fetuses, whatever) as if one is interchangeable with another.

Ballastexistenz said what I was thinking - but, typically, she (he?) said it much better than I would have.

Another possible consideration are the resources required to raise a disabled child. If a parent doesn't have access to the appropriate/sufficient resources and decides not to implant the egg, does this decision devalue existing persons with disabilities?

But they don't really know, do they? What I've read from many parents of disabled children is that the experience of parenting a disabled child, totally undid their preconception that they wouldn't be capable of raising a disabled child.

(There are resources available to help - although they're a long way from being sufficient.)

I also think you're focusing your analysis at a different place than I would. Limiting our analysis to examining the choices made by individuals and asking "does this decision devalue existing persons with disabilities?" is missing the forest for the trees.

We need to ask not only about the individual decisions made, but about the global impact of:

* A medical system that implicitly (and often explicitly) encourages women to not give birth to disabled babies whenever it's avoidable;

* Belief in the myth that raising a disabled child is a huge tragedy that only extraordinarily heroic parents will be able to (scarequote) overcome (/scarequote);

* Belief in the myth that a disabled life is one of suffering - as ballastexistenz says, a "total negative experience" - compared to a nondisabled life.

* A conception of "informed consent" that doesn't give potential parents an opportunity to discuss the issues with actual disabled people and their parents - or at least to read essays and pamphlets presenting those perspectives. But without that kind of contact, I don't think it's reasonable to call the decisions potential parents make "informed."

* The lack of sufficient resources to help disabled kids and their parents, especially if the parents are already low-income.

The impact of all these factors is to leave many parents feeling that giving birth to disabled children is an unreasonable, impossible choice, when usually it's not. And, of course, the global result is a less diverse society.

I struggle with this myself. My reflex is to make pretty much the arguments that you (GG) have made in this post. The disabled rights view on these issues runs directly counter to our society's conventional wisdom about disability and medicine. But even though your arguments feel like "common sense" to this ablebodied person, I'm beginning to think that they're nonetheless wrong.

11:05 AM  
Blogger GG said...

Ballastexistenz & Ampersand -

I think I remain fundamentally unconvinced that one pre-implanted egg (and the future person associated therewith) is not interchangeable with another. The position which you are holding would seem to conflict with a commitment to abortion rights, since it implies that by aborting a fetus you are denying the future person the same opportunities which you seek to provide to the egg with genetic abnormalities. How do you reconcile the two situations? Is the key factor here the rationale behind the decision i.e. its OK in principle to decide not to implant, but its not OK to decide not to implant an egg due to genetic abnormalities?

12:50 PM  
Blogger ballastexistenz said...

One person put it thus: The difference between the right to choose whether and the right to choose who.

It's a totally different kind of decision, made for totally different purposes, with totally different impacts. Turning this into a pro-life versus pro-choice debate merely clouds the issue.

One fetus and another are not interchangeable. When you are killing a fetus, you are killing a unique life form, and any future life form you create will not be the same as that fetus would have been. This is basic, basic genetics, even identical twins are not precisely the same genetically or personality-wise.

Now, whether or not killing a fetus is okay in some circumstances is a totally different argument than whether one fetus can be interchanged with another. Basing the idea that killing fetuses is okay with the idea that all fetuses are interchangeable, is basing your argument on flimsy ground. If you're committed to being pro-choice, I'd say find a better foundation for your argument than that.

But too often arguments about the right to choose who get dragged into being arguments about the right to choose whether. I notice that in arguments about the ethics of choosing male over female fetuses, people are quite clear that a male fetus is not a replacement female fetus or equivalent to a female fetus. People are also quite clear that this reflects an overall devaluation of the lives of women in that society, who have fewer opportunities, harsher lives, and in some societies mothers can be punished for having too many female babies.

But nobody is saying, "Female fetuses are equivalent to male fetuses," because that's nonsense. Smaller genetic differences are the same way, two fetuses or embryos are genetically individual. Choosing one over the other for a specific reason related to characteristics of one over the other (which in itself affirms the idea that fetuses/embryos are individual -- otherwise, why bother selecting at all??) does say something about whether people with those characteristics (which are of course not the only characteristics of the person, or any guarantee of a bad or good, or even worse or better, life) are valued and given equal opportunities in society.

1:48 PM  
Blogger ballastexistenz said...

Or... would you say that aborting female fetuses in order to bring a male fetus to term, specifically because of the gender of the fetus, is the same as giving one of those female fetuses (interchangeable with the male ones after all) the chance to have the opportunities in life that a boy would have, to start life with the advantage of being male?

Seems to me more like you're denying a couple of female fetuses the opportunity to exist at all, entirely because they're female, and then choosing instead a male fetus who will have all those opportunities once he is born.

And I don't know a lot of pro-choice feminists who'd argue much with that. Somehow when it's a matter of "male" and "female", the lack of interchangeability becomes really damn obvious.

1:52 PM  
Blogger GG said...

Ballastexistenz -

The question of whether and who are inextricably intertwined; every time you excercise a whether you are automatically making a decision about who. So I don't think its inappropriate to consider the ramifications for choice in this instance.

You express concern about choosing females vs. males in that it is "denying a couple of female fetuses the opportunity to exist at all, entirely because they're female". What about the opposite, choosing females over males? Is that equally bad, because it denies the male fetuses the opportunity to exist at all, entirely because they are male?

I'm trying to pin you down regarding your predicate for allowing or denying terminations of any type. If "denying the opportunity to exist at all" is your criteria then it would require the universal rejection of all viable eggs, fetuses, etc. As you seem to accept that some terminations are OK it follows that you have a narrower criteria.

Would you agree with the statement "terminations are acceptable when they don't rely on any intrinsic qualities of the egg/fetus"? Too narrow? Too broad?

2:10 PM  
Blogger ballastexistenz said...

You are denying one fetus the opportunity to exist at all no matter why you are doing it, and whether or not you believe it is right to do so sometimes.

I am saying that doing that specifically in order to allow what is assumed to be a more "desirable" kind of life to take place, is not only ethically wrong, but not ethically equivalent with, say, turning one fetus into another fetus. They are individuals whether you are pro-choice or pro-life.

I am not making statements about in what circumstances it is right. I am making statements about one circumstance in which it is wrong, and why.

The fact that a fetus is distinct from another is not automatically an argument for or against abortion, it's a fact, they are distinct individuals in more ways than one. If you're pro-choice, and you want to construct an argument in favor of pro-choice, you have to take that into account or you've got a weak argument.

Figure out what reasons are and are not okay for killing a fetus, but don't pretend that you're killing something indistinguishable from every other fetus.

I mean, if we're talking eggs and sperm, those are unique too, but women shed eggs once a month and men shed sperm all the time, and most people are agreed that these things are okay. But most people are also probably agreed that one is not the same as the other and, if it became an individual person, would not be the same person as if another egg had been fertilized or if another sperm had made it to the egg.

Where it would be a problem is if people started hand-picking which eggs and sperm got to meet based on what kind of person (male, female, disabled, non-disabled, whatever) would turn out if they combined them.

Do you get the distinction when it's made in a realm where there's not generally a giant debate about whether, say, menstruation is murder?

And do you understand why the debate on that kind of genetic engineering is distinct from the debate on whether it's wrong to masturbate or menstruate?

To me, this particular aspect of the debate is the same whether you're talking about selecting the very sperm and eggs that combine, selecting embryos, selective abortion, selective infanticide, or selective homicide in general. Which is why I won't be drawn into pro-choice vs. pro-life debates, I'm talking about the idea that certain people shouldn't exist and others should take their place, no matter at what point people decide to engineer this. (And I think engineering it further and further back is merely a way for people to feel more detached and comfortable about the whole process, because it's way easier to convince yourself that two embryos are alike than two adults.)

2:40 PM  
Blogger ballastexistenz said...

Oh, and mass sterilization of real or suspected "carriers" is another way that this has been done, which does not involve killing but people mostly agree is wrong.

2:42 PM  
Blogger ballastexistenz said...

Another question (although this rests upon ideas about the world that you seem to hold and I really don't):

You seem to have something against lacking certain abilities.

Would you like to be able to not only filter your perception through abstraction (and therefore totally miss perceiving important aspects of the world), but also have the capability of turning that off and going to purer versions of perception when that's advantageous?

Do you miss not being able to do that?

Do you feel that your quality of life is diminished by not being able to do that?

If you could do that, would you miss it if you suddenly couldn't?

Because that ability appears from the latest science to be what broadly differentiates people like me from people like you, cognitively. And that ability may well be behind my "cognitive disability".

Now, I don't think I'm better than you, or more worthy of life than you, or happier than you, because I have an ability that you don't. I think it's just different. Different people have different levels of ability at different things (ranging from none at all to a lot), that seems normal and right to me, and not a cause that some should be unhappy and others should be happy, or that some should be denied opportunities and some should not. But have you thought about any of this?

3:03 PM  

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