Standpoint

I'm going back to the whole PGD-for-hair-color thing.  Because lots of people raised some very good points and some very good questions and I want to keep talking about it.  If you're bored, feel free to move along (as if you didn't already feel perfectly free to do just that).

Jody pointed out that my position seems pretty freighted with my experience as someone on the margins of mainstream parenting for a number of reasons (like being a lesbian transracial adopter, for instance) and the frustration that brings in terms of people's expectations about what makes for a family and what makes for beauty etc.  Yes indeed.

Sara raised some scenarios of ethical conundrum in which aesthetics overlap with disease (sort of) or in which values conflict--like the value of being a different kind of person versus the value of being free of what mainstream society might consider a defect (Sara used little people versus typically statured people.  Me, I always think of deaf people when this kind of question is raised.)

Anyway, I got to thinking that I should share my personal stakes in this discussion.  So here are the ones that immediately come to mind:

1.  I'm a member of a group that could well be severely reduced in numbers were we to find a gene for it.  I know that you, gentle reader, would never select against a gay embryo, but that doesn't mean most people wouldn't.  Most people probably would, given the choice, right now, today.  (Mind you I'm not so sure I think there's a gay gene out there, but let's just say they were to find one.  God forbid they ever do, and this is why.)

2.  I am someone with very little personal feeling about being pregnant and passing my genes into the future.  I realize either or both of those things are very important to some people.  My interest in it doesn't go much further than idle curiosity.  I am awed by human reproduction, but I don't have a burning desire to participate in it directly.  Which is just to say I do know that the desire to be pregnant and/or pass on ones' (or one's partner's) genes is almost indescribably strong for some people, and I am sympathetic, but I am not empathetic in the sense that I just don't get how that feels.

3.  My two best friends are directly impacted by ART.  One went through IVF twice and she and I even had an egg donor talk once (didn't ever go through with it and she ended up with a surprise bio-baby in the happy end).  My other best friend and her female partner are starting down the path to donor sperm selection, beginning with a friend.  So it is not that I am untouched or unfamiliar with the details of various ART options, beyond just reading infertility blogs (which I've done a lot of too).

4.  My family is composed of entirely un-biologically-related members.  We don't look a thing alike either--no two of us.  And that is a deep, special blessing with gifts that I think most people never consider.  It is most often assumed to be a handicap.  And it is a social oddity, to be sure, but I am not one to assume social oddities are necessarily handicaps.

So that's where I'm coming from.  Now, Jody raised the problem of how you go about actually regulating these things.  I don't know, and that's not my area of expertise.  But here's what I think.  I think people like me and like Jody can certainly sit in meetings with people whose expertise is actual regulation--and actual enforcement of regulation--and air our concerns and help to hammer it all out.  Sara, on the other hand, seems worried in both her comments that the special needs of special cases and the special knowledge of the parents in question would somehow be overridden by regulations.  But "regulation" doesn't mean parents have no voice in decisions.  In fact, it can mean whatever we hammer out in a meeting with the regulation experts.  It doesn't have to be all one way or another.  And as for ethics boards consisting of all tall people (making decisions, in Sara's scenario for little people), why would that necessarily be the case?  Hospitals already have ethics boards for trouble-shooting things that come up (which they do on a regular basis).  I don't know how they get put together.  But I strongly believe that any board overseeing these kinds of decisions should have representation from someone with strong disability rights credentials.  Because the case of the little people forced to have tall children or a deaf parent forced to have a hearing child are good examples of how subjective these kinds of issues can be.

Calling for regulation or ethics boards or whatever is not saying "people should not be allowed to blah blah blah."  It's saying "this needs to be mulled over much more thoughtfully than just to say 'is there a market for it?'"  All the cautionary concerns raised by you all and others should be part of the mulling.  It's all valid fodder.  But I still maintain laissez-faire is not the way to go when it comes to medical ethics, especially medical ethics concerning entirely helpless, dependent beings, from embryos to babies.  And although PGD may be quite rare today, it may be considerably less rare a generation from now, (as is the case with all kinds of ART that was in the wee developmental stages a generation ago and is all but routine today).  That being the case, it is a good idea for us to establish--at the very least--a set of values upon which to base future uses of such technology.  And even if there's loads of gray area (and there is likely to always be), I think the values that technologies like PGD be used for 1) legitimate medical reasons only and 2) without violating the rights of the child in question is a great place to start.  After that, we can sit around tables and argue for and against various cases being legitimate/rights violations or not.  But I think those values would put hair and eye color selection quite obviously beyond the pale.  And I'm good with that.

You?

Comments

[Sara]

I do understand what you're saying. I think that one of the reasons that we keep disagreeing is that you are talking about how things should be in a much better world, whereas I'm basing my discussion in a world where gay people can't legally marry in most states, and can't adopt or foster in some, and where regulators in at least two states are trying to pass laws basically outlawing IVF (or the procedures that allow it to work, anyway). I have absolutely no faith in the ability of real-world "regulators," who are just people, to make sets of rules about reproductive technology that actually make sense in specific cases, even if they sound good in general terms.

My stake in this discussion is based largely on the hate that is spewed forth at infertile people whenever there is an article in the popular media about ART, surrogacy, or basically any solution to infertility that doesn't involve adoption. By far the loudest public voices relating to infertility scream "just adopt! If you do anything else you are EVIL!" As if adoption were easy. Or unambiguously good for all parties involved. Or appropriate for everyone. If you haven't already checked out the "letters to the editor" after a few popular press infertility articles, then you really should. It might help you to understand why many infertile people have a hair trigger on the topic of regulation of IVF. If the majority had their way, the use of ART might be severely curtailed.

It's hard enough for infertile people to get access to health care. I just don't want it to get even harder. In a perfect world then yes, people shouldn't be able to select for hair or eye color (they also shouldn't want to). However, in the imperfect world in which we live, I think that there is a lot of potential for harm in formal legal regulation of assisted reproduction. I'm pretty sure that we're going to find out in the near future.

Interesting topic.

[PPR_Scribe]

We can certainly look to other countries to see how to go about regulating ART. Also, reforms to our health care system more generally should include reproductive medicine. And finally, feminist movements *must* IMO expand the notion of "reproductive rights" to include issues around having children instead of an almost exclusive focus on *not* having children. This would include issues around access to ART for low income men and women.

It would also be nice if we could begin developing international policies around this so as to not repeat the global mistakes from the adoption arena. For example, how comfortable would we be if--in order to bypass US regulations--many folks just flew to India or other "fertility tourism" spots to hire surrogates?

[Shannon]

Heck yeah, PPR, the article I just read about surrogacy in India basically recommended banning international surrogacy to prevent an international race to the bottom and the establishment of a breeding class.

Sara,
I agree we live in a screwy world and I do see the vitriol unleashed at people using ART. But the fact that some pro-lifers are trying to ban IVF somewhere is not a good reason to back out of regulation. It's an argument for sensible proponents of reproductive rights to get involved.

And we need better public education on all of these issues. Because people who say "just adopt" pretty much to a person have never adopted. If they had they'd realize there is no "just" about it.

But to turn it into right-wing regulation versus no regulation is a terrible idea, in part because the idea of no regulation will quite possibly fire up fence-sitters to lean toward the right-wing options, give a vacuum of better ones.

Because "best interest of the child" is wielded by the right-wing to keep queers from adopting doesn't mean we should abandon trying to accommodate children's best interests in adoption. I mentioned that somewhere in this discussion--I think it was in response to a commenter at Strollerderby--that while home studies are imperfect and adoptive parents complain about them as invasive or whatever, we, as a society recognize that you have to have something in place to screen potential adopters. It isn't "fair" as compared to people who reproduce biologically with ease, but life isn't fair.

As an adoptive parent, I accept the hoops I have to jump through and work to make them more effective, useful, just hoops. I think ART ethics and regulations and basic social standards are a good generation behind adoption ones (since ART is relatively new compared to adoption) and could usefully take some cues from adoption best practices.

My friend who is entering the donor sperm adventure right now is required by her clinic to meet with a social worker and go over issues in donor gametes and collaborative reproduction. Their potential donor will have a similar meeting. She is not at all put off by this, although as a social worker herself, she probably knows more about it than the usual client (and maybe more than the social worker she'll meet with, since that person usually deals with straight, married clients). She recognizes the process as a generally good idea, not unlike an adoption home study. And she plans to give the clinic a lot of feedback about ways to improve their process given her own expertise and her position as a lesbian client. Cole and I did the same in our "race-training" for transracial adoption (which was pretty awful). Rather than advocating for throwing out the bad training, we offered ways to improve and I have been working ever since on plans to create better types of training for transracial adoption.

Basically I think we informed folks need to stay in the conversation in a more involved way than just to oppose any regulation on the grounds that regulation might be bad. We have to get involved in the process of making it better. Otherwise "regulation" will simply amount to people who can afford to, doing anything they want at the expense (whether monetary, or otherwise--as PPR points out) of people with fewer resources.

[Sara]

You have just given several examples of effective non-regulatory approaches. Do you think that every donor sperm recipient should be legally required to get counseling first? Counseling may be a good idea in many cases, but forcing it on people (as opposed to making it easily available) strikes me as paternalistic and condescending, especially considering the ready availability of free sperm (and it even comes along with free drinks in many cases) in most bars around the country. Why should someone accessing sperm of someone who will not be in a paternal role to create a child require legal intervention if it happens in a clinic, but not in the back seat of a Chevy? Should we also require that single mothers who don't wish to name the father on a birth certificate get counseling? The issues addressing the children are likely to be the same in any of these cases. The only difference is the context of the children's conception. Where do you draw the line? The adoption/homestudy metaphor is not apt here, because we are not talking about placing children that already exist. We are talking about curtailing the freedom of a specific subset of adults that DO exist, in the interest of children that do not yet exist. (I'm not arguing that counseling isn't a great idea. I just think that legally requiring it, and especially doing so of some potential parents but not others, is problematic.)

Also, can you state clearly who will actually benefit from the regulation that you are proposing? I think that would be a really helpful starting point. Are you arguing that it will hurt children to have been selected as embryos based on their eye color? Unless we place no value on life at all, I think you'd have to acknowledge that the selected embryos (i.e., the only ones that will ever become children), gain a positive benefit (i.e., life) from having been selected.Where is the overwhelming state or public interest that justifies passing laws here? I understand that the idea of selecting embryos based on their features is repellent to you personally, but does it actually harm you? And does the practice (as opposed to the ideas that underlie the practice) really harm your children or my child? The arguments that you make about resources don't really hold water here, in my opinion, since the resources being used here would not otherwise be directed to help anyone. I guess I think that to restrict what is essentially private behavior, there needs to be some compelling public interest, and not making you (and me too, I admit) feel squicky inside isn't a compelling public interest.

The case of sex selection is informative here. Some countries have tried to prevent people from determining the sex of their fetuses because culturally-determined preferences for children of a specific sex (usually boys) were leading to selective abortion of female fetuses. Here the societal harm was a severely biased secondary sex ratio, which meant a shortage of women, which can cause all kinds of social problems for society as a whole. But would tiny fraction of a percentage of extra blue-eyed or read-headed babies really pose any kind of threat to society?

Presumably, if it is easy to diagnose eye color using PGD, it'd be even easier and cheaper to choose your children's eye color using amniocentesis and selective abortion, but I'm not lying awake nights worrying about that happening. This really is a fringe situation that you're talking about, so the idea that it would have any kind of impact on society really seems far-fetched to me.

Just to reveal my own point of entry here, this argument is charged for me personally as well. I am not only as the mother of an IVF-conceived child, but also as the carrier of a genetic condition with primarily cosmetic consequences. It's dominant, so I have the trait, and while it doesn't have much of an impact on my quality of life (it's visible to people who are looking for it, but not at all obvious--many of my close friends don't know about it). Would I have done PGD to prevent passing it on? Well, the technology isn't there, but if it was, and I could afford it, and was doing IVF anyway? You betcha! Even though that kind of thinking would have kept me from being born in the first place? Yup. (Don't get me wrong, I love being alive, and am very glad that I was born, but all things being equal, I really would prefer not to pass this particular gene on.) Do I feel devalued by the fact that others probably feel the same way? No. So, I guess I have a bit of a stake in giving the scientists a bit of free reign, in the hopes that they will develop technologies that will actually help people.

(sorry in advance if this was a double post--my computer just did something weird.)

[Shannon]

My bottom line in ART regulation is the rights of the child (not the rights of an embryo, but of the actual post-birth human being). It's disingenuous to say that is unimportant in ART, because no child exists. The whole purpose is to create a child and that future child's rights should be considered.

The backseat of the car will always be there. But that doesn't mean all other reproductive behavior should take that as their model. I know a backseat-of-the-car baby and he would dearly like to have known who his father was. Just who. Not to have a relationship, necessarily. While his situation is not something that can be regulated, creating a situation like his intentionally, through medical assistance is wrong. It violates first do no harm.

This is different from requiring women to name "fathers" when they give birth, because such births can be due to rape or other bad circumstances and the woman's judgment should be considered important. (In fact, my friend mentioned above thinks his father might have had dangerous criminal connections and that his mother was protecting him and the rest of the family by keeping the information from them.)

But I don't think there's a serious harm involved in making people who take advantage of third-party gametes receive some kind of counseling. There is nothing unreasonable about an adoption comparison here, as the child created will face many of the same issues that adopted children face, regarding her biological origins.

As for blue eyes, I have nothing against them and I don't think a negligible increase in them will harm society. But I think for-profit clinics offering those kinds of fringe options do harm society--by driving up the cost of actually useful procedures for people who actually need them and by skewing the values by which we decide how new technologies will be used. it's not the blue eyes that bother me, it's the frivolous uses of complicated and expensive technology offered to the highest bidder.

It's really capitalism that bothers me most of all about this. The fact that we can have boutique health clinics for some and no access whatsoever for others (my children's mothers had zero prenatal care; my children were released prematurely from the hospital at birth because they were medicaid babies; meanwhile some rich white woman is paying 15K for green eyes because she used donor sperm and wants to match her husband?) really, really bothers me. And I sincerely believe that putting perimeters on that sort of thing forces research into the helpful areas you want to see bolstered.

None of my concerns could be addressed tomorrow. But if this country is truly going to reinvent health care and make it universal we have to think about the whys, not just the whats when we determine how to approach access.

[PPR_Scribe]

"But would tiny fraction of a percentage of extra blue-eyed or read-headed babies really pose any kind of threat to society?"

Yes--especially if those "cosmetic" choices are linked to racially and ethnically meaningful attributes. Would more people want brown or black-eyed children? Black or brown hair? Wider noses?

Also, arguments around lack of regulation in coital conception often come off sounding as if there were some "deserving" parents and other "non-deserving" parents. (I am not saying that is what you were saying.) I hear these kinds of statements in the adoption field as well.

We have largely re-envisioned our ideas of "rights" to include the right to be a parent when that process does not occur through sexual means.

This is fine, as it can separate "procreation" from "sex" enabling parenthood for groups (e.g., single parents, gay and lesbian couples, etc). But to what extent should such a right be guaranteed, and who should have access to such a right? How much of our limited health care dollars should be set aside for the guarantee of such rights? And--as in adoption--how should the rights of various members of the ART process (including children born as a result) be balanced?

My fear is that "best interests of the child" will largely be a fiction in ART. (As it often is in the adoption realm.) Patchwork state statutes, letting client preferences rule the process, secrecy in the guise of "confidentiality," institutionalizing disparities based on wealth and power--I see no evidence that these moves will result in any better outcomes in ART than they have in adoption.

[Shannon]

PPR have you looked at Mary Lyndon Shanley's shift from "best interest" of the child to rights of the child? She points out how "best interest" usually ends up meaning the more privileged the parent, the better for the child, which overlooks a child's rights to relationships of importance to the child that are not based on the privilege of the parties to the relationship. EG, if a child has a strong connection to someone that connection should be protected, regardless of the legal status between the parties (a non-biological lesbian second mother who cannot adopt, for instance, or a non-custodial parent who has been deemed unfit to parent but is still very psychologically important to the child). In the realm of ART, I think the right not to have been brought into existence on the basis of cosmetic preferences is an interesting idea to contemplate. There is no way to enforce this and I don't even believe we should try. But grounding our reproductive ethics in the right of the child would lead us to look suspiciously at such a process.

A shift of society's ethos from "if you have the money, you have the right" to "take care of the basics for ALL first, then move onto these extras" is what I'd like to see.

[dcfullest]

Totally off subject, but I just read this and thought you would find it interesting. (Maybe it could be a Strollerderby article?):
http://shakespearessister.blogspot.com/2009/03/breaking-silence-on-living-pro-lifers.html

[Jody]

I start with the fact that ART is probably the most un-regulated health sector in the USA right now. So the basic concept you propose, Shannon -- that ART needs to be more closely regulated, that the rules need to be rules and not just guidelines, and that those rules should be framed by bioethicists, MDs, and patients -- is basic common sense. Of course. Especially if the trade-off for greater regulation is federally-mandated insurance coverage.

Once you get to the point where there is insurance coverage and regulation, then you get into the discussion of what the state has a legitimate interest in banning, or restricting. And here I have to say: I don't think you're going to find widespread social support in favor of banning tests that tell parents any knowable trait about their embryos. That doesn't mean that we shouldn't still ban screening of certain traits. I do think it means that you're going to need to articulate a very compelling state interest in acting against the majority's will.

Here I think that parents of children with down's syndrome might have a lot to contribute to the discussion. We don't have to theorize a world in which people would screen for a gay gene and then abort the gay fetuses. We know that people are screening for down's syndrome and that 85% of parents carrying fetuses with downs markers are aborting. And we know that parents of kids with down's syndrome find this deeply, profoundly upsetting, and that they believe (with good reason) that the habitual abortion of fetuses with downs markers is hurting the qualify of life for kids with downs who are born. There are fewer resources devoted to therapy. There is less social acceptance. There are concrete costs.

And yet--imagine the outcry if anyone tried to ban people from screening for down's syndrome during pregnancy. There is absolutely zero interest in such a move.

I don't have any coherent connection between that situation and the question at hand: which traits should be legally screen-able under a regime of ART regulation/PGD oversight? What I do have is a tentative sense that in the US, we tend to privilege reproductive choice over all other considerations. Even people who are crazy anti-abortion don't (in general) want the state telling them what they can and cannot discover via pre-natal testing.

Let's face it -- there is probably some set of people in the US who are screening for sex in amnio right now, and aborting their babies if the sex isn't right. We as a society don't outlaw this, however: we rely on a diverse society with diverse values to limit the effects that sex-based abortion has on society as a whole.

Why would we want to act differently when it comes to blue eyes or blond hair? (Especially in a nation where 50% of babies born now are born to Latina mothers for whom the genetic question is mostly moot.) What is the compelling state interest here?

****************

Two more points:

(1) You say that ART procedures are on the rise, so we shouldn't assume that PGD screening won't become more widespread in the future. Fair enough, but I stand by my opinion that people are unlikely to pursue IVF unless infertility drives them to it. Maybe I'm being naive, but I think most people would gladly abandon their ability to select hair or eye color in return for conceiving a baby with fewer interventions. I suspect that even lesbian couples trying to conceive a baby prefer insemination to IVF, when they choose pregnancy as a route to parenthood.

(2) I don't agree that ART using one own's gametes has much in common with adoption. In fact, it's the lack of commonality that makes ART so attractive to most infertile couples. We are presumed to have control over our own ovum and sperm; isn't this at the foundation of reproductive choice? I'd be at least as wary of state action that undermines my ownership of my own eggs as of an explosion of blue-eyed/blond-haired model-babies.

I can't sell my organs, because the state believes there's a compelling interest in preventing this. So it's not as if my ownership of my own body parts is absolute. But when it comes to reproductive freedom, I'm far more worried about too much state regulation than too little.

[Jody]

Also, you write:

"In the realm of ART, I think the right not to have been brought into existence on the basis of cosmetic preferences is an interesting idea to contemplate. There is no way to enforce this and I don't even believe we should try. But grounding our reproductive ethics in the right of the child would lead us to look suspiciously at such a process."

I confess I'm a little surprised that you would frame the question this way. It seems pretty dangerous, from an abortion-rights POV, to start pushing the rights of children back into the pre-natal realm.

[Jody]

The "even lesbians" phrase is bothering me -- it sounds icky. I didn't mean it to sound that way. I meant to include a group of parents who are by definition excluded from "old-fashioned" reproduction, yet who might still prefer the least interventionist methods possible. I hope that was clear.

[Jody]

Shannon,

OK, I found your compelling social interest in the comment above:

"...I think for-profit clinics offering those kinds of fringe options do harm society--by driving up the cost of actually useful procedures for people who actually need them and by skewing the values by which we decide how new technologies will be used.

It's really capitalism that bothers me most of all about this. The fact that we can have boutique health clinics for some and no access whatsoever for others (my children's mothers had zero prenatal care; my children were released prematurely from the hospital at birth because they were medicaid babies; meanwhile some rich white woman is paying 15K for green eyes because she used donor sperm and wants to match her husband?) really, really bothers me. And I sincerely believe that putting parameters on that sort of thing forces research into the helpful areas you want to see bolstered."

OK, I'm taking a deep breath.

I don't think the problem you're angry about is eye-color selection in PGD. I'm starting to think you're angry about ART. After all, it IS unjust that poor women aren't getting prenatal care while middle-class women are spending tens of thousands of dollars trying to have biological children. And if you banned PGD tomorrow, the IVF clinics in New York and LA and DC would still be packed with well-heeled women ready to spend $100,000 to get pregnant, if that's what it takes. Medical residents would still be lining up for the RE fellowships. The money machine would still be at work.

What part of PGD, in itself, is driving up medical costs for other people? I can't think of any.

But I know that ART is driving up medical costs, because women who conceive after ART have more complicated pregnancies, and they are more likely to have multiples who have medical complications, and we know that hospitals have been building NICUs to make money off preemies (whose numbers have exploded thanks to ART twins-and-more) instead of building prenatal clinics for women without insurance.

I don't see how the social costs you describe come from PGD. Unless you're talking about taxing the wealthy so much that they can't afford PGD, there's no way that a ban on that procedure would alter the distribution of our medical resources. IVF is already the least federally-funded realm of medicine. You couldn't do embryology research at all in the last 8 years because of Bush's ban. (It wasn't just stem-cell research he hobbled.)

But I can see why ART seems unjust in light of your daughters' mothers' prenatal care.

Am I way off-base here? Because PGD doesn't fit the story you're telling, not really. But ART certainly does.

[Sara]

Regarding the argument that elective PGD drives prices up for other people (i.e., those not using PGD), how can that be so? Fertility docs generally aren't going around treating cancer patients, or offering low-cost care to poor people, in their free time. They mostly don't get out of bed for less than $10,000, so how does finding another way for a very few of them to make even more money affect other patients? I really don't follow your argument here, unless you are seriously advocating a total socialist overthrow of the system, in which case, well, good luck with that. I suspect that if that's what you're going for, then you have way bigger fish to fry than PGD, though. (I just reread Jody's comment above, and realize that she made this point better than I did.)

As for the effects on non-rich people, how does putting another obstacle between people and health care help them? That's where my hackles keep going up. Mandatory counseling prior to the use of donor gametes or ART or what-have-you will raise costs for sure. Who will be paying the counselor and the ethics board? When you put that on top of the already high cost of fertility treatment, it might just be the straw that breaks the camel's back and keeps care away from patients. Also, for working people, it is hard enough to manage the zillions of doctor's appointments associated with ART. So now they should be REQUIRED to attend a bunch of extra meetings? It isn't actually true that all couples using IVF are rich. Many are, but some people are lucky enough to have insurance that covers IVF (a tiny minority) and others go way into debt, or try crazy solutions like taking a job in Korea in part for the access to cheap IVF (that'd be me, but in my defense, it was a pretty interesting, albeit non-lucrative, career opportunity too). Adding any further obstacles or expense would almost certainly keep some people from getting care. A few hundred extra dollars to pay the counselor might not seem like a lot to you, but it does to me (I'm thinking of the sperm donation case--this is clearly not an issue for hair color selection!)If you could somehow make the state (i.e., everyone) pay for all of this, AND get infertile people paid time off work with no repercussions to attend these counseling sessions, then I guess I'd be neutral about this issue, but otherwise, I'm afraid that particular cart is going to roll back and crush at least some of the horses.

I don't think I agree with this statement: "It's disingenuous to say that is unimportant in ART, because no child exists. The whole purpose is to create a child and that future child's rights should be considered." This might in part be our fundamental place of disagreement from which our differing philosophies about ART arise. I don't think that 5-day embryos have any rights at all. None. Yes, I did weep when my first batch of embryos died, but it was their potential that I mourned, not their personhood. The second you try to confer rights on a five-day embryo, you are opening Pandora's box in a huge way. I'm not just talking about abortion-related politics. Given that women don't ever even know if they're pregnant when their embryo is at the five-day stage if they're not doing IVF (or if they are), should all women be forced to take folic acid all of the time? Not to drink? To eat a balanced diet? All of these things would absolutely be in the best interests of the future child, but can you really argue that you should override the woman's right to make decisions about her own body just because if she makes poor choices, it may negatively impact the future child? Does the equation somehow change fundamentally just because the embryo is outside of the mother's body? In your original post, you spoke of "legitimate" uses of ART and PGD, but really, who gets to decide what is legitimate? Also, what "right" is being violated here for the embryo that has been chosen (i.e., the only one that has a chance of actually becoming a child)? The right to not have blue (or brown, or green) eyes? The right not to have superficial parents?

PPR said "arguments around lack of regulation in coital conception often come off sounding as if there were some "deserving" parents and other "non-deserving" parents. (I am not saying that is what you were saying.) I hear these kinds of statements in the adoption field as well." I brought up hate toward infertiles earlier, because the argument that I'm hearing in many discussions of regulation of ART has an undercurrent of assumption that infertile people are undeserving, and should have to prove their worth to an ethics committee before being allowed to attempt to reproduce in the only way that they can, while fertile people are allowed to go about their business without any such obligation (maybe I'm not hearing you correctly, but that's what I'm hearing). Like the fact that we want to have children even though we can't do it via sex is an indicator of poor judgement and weak ethics. (In fact, people often say pretty much exactly that.) I think that the rights and responsibilities of bio parents or perspective bio parents should be the same whether those parents need help conceiving or not (and whether they are rich or poor, young or old, financially well-off or not, etc.) I think that the right to attempt to treat, or work around, an illness that affects reproductive functioning, is equivalent to the right to attempt to treat, or work around, any other physical inability to perform a normal function of life (I'm thinking of donor gametes here, not selection for hair color). Adoption is a totally different issue, because adoptive parents are not attempting to reproduce. They are attempting to gain parental rights with regard to someone else's child.

"Yes--especially if those "cosmetic" choices are linked to racially and ethnically meaningful attributes. Would more people want brown or black-eyed children? Black or brown hair? Wider noses? "

But really, how is this harm actualized. I agree that it is at least potentially harmful that people HAVE those preferences, but given that e.g., the choice of trying for a blue-eyed child is only available to people who are least carriers of the genes that confer blue eyes (and therefore have at least some white heritage, and in most cases will be white), what does selecting among the genes that the parents already possess have to do with race? Are you concerned that biracial people will be using PGD to select features in their children associated with the more privelaged of their races? Really? And even if they do, and their choice is motivated by pure racism (or self-hate), why isn't it the racism (or self-hate) that's the problem, rather than the PGD? I still fail to understand how such a procedure could have any real impact on anyone outside of the immediate family.

[Shannon]

Jody, I don't know enough about how each procedure is developed to say, really, that it's PGD. But to my mind it isn't ART, per se. It's quite okay with me to use it and quite okay with me, (as I said in an earlier post or comment or somewhere) to fund it with my tax dollars. Within limits. And those limits would be financial, in order to be able to afford the basics for everyone, some of the higher-end things might not be fundable.

But I'm not convinced (I'm not saying I know for a fact, I'm just super suspicious) that any medical procedure actually costs what we pay for them in the U.S. I think there is much more profit involved than needs to be. In fact, why not have zero profit involved? I am absolutely not angry about ART. About women spending $100,000 to get pregnant? Or $15,000 to choose hair color? Not so much angry as horrified, I suppose, at what appear to be their values. But who am I to go around pointing fingers at individual people I don't know anything about? I would, however, be willing to say something like, "under the new public health system, everybody gets X IVF tries and all necessary accompanying procedures (like PGD) and all required drugs, but you can't put more than two embryos back at a time and after those X attempts fail, you're on your own (with boards set up to evaluate possible needs for exceptions). And everybody, everywhere gets basic reproductive health care including real access to abortion and post-natal care for mothers and children including home nurse visits to help women on the margins not slip off entirely and reduce the need for foster care and economic-based adoption decisions."

I am not opposed to ART (I'm going to say that again because it seems like the knee-jerk assumption about anyone who says it should have limits). But I am totally willing to limit ART to expand other areas of health care. Yep. Totally willing.

(By the way, somewhere in your comments you implied I was opposed to PGD itself. I am not. My daughter might need to use it someday, in fact, to prevent having a baby with sickle cell disease, as she is a carrier.)

[Shannon]

Well Sara, I guess I am trying to overthrow the system for a socialist approach when it comes to health care. And I do indeed have bigger fish to fry than PGD for hair color.

I think the reason that got me going was because it is such an egregious example of how the values in our society are skewed toward spending loads of money on stupid things while begrudging poor people anything at all out of our pocket.

And I can only ask you why it is that Korea has cheaper IVF? And I have no idea what the answer here is, but do you think that Koreans, who have access to cheap IVF also have access in the same way to frivolous trait selection opportunities? (I know Koreans don't have a blonde option, but theoretically speaking--in a system where health care costs are kept down for maximum access, frivolous things are not covered, by and large.)

As for the infertile-hate and assumptions that bio-parents seeking intervention have worse ethics or whatever, no that isn't coming from me. I have no God's will is shown via ability to reproduce or whatever it is that those people are thinking. I mean duh. I can't reproduce biologically with my partner either, so obviously I don't think that.

But I'll say again that my belief in limits on ART does not mean I am opposed to ART.

In a world where everyone gets true access to needed basic health care for free (well, based on taxes), we are going to have to pick and choose to a certain extent and everybody will not be able to simply get whatever they want.

I am also not arguing for embryo rights. I am arguing for reproduction decisions being made based on whatever real, actual children will need or deserve once they arrive. Like access to information about their genes, mainly.

[Jody]

Shannon,

I agree -- we should have a single-payer universal health care system like that of the UK or Canada. It should include exactly the kind of coverage you suggest.

I know from the stories of infertile people in those countries that the private clinics will still exist, and that people with money will still pay more for things that horrify individual groups of us.

As long as everyone has access to safe, affordable health care, I'm OK with that. To me, the cost of outlawing the stuff I find horrible (for example, people getting the chance to outlaw stuff THEY think is horrible) is greater than the horrors.

[Sara]

I totally agree about safe affordable health care for everyone. It's a basic human right, and it's a travesty that in a country as wealthy as the USA, it isn't a given.

IVF costs about $3000/shot in Korea, and for some childless Koreans is government-subsidized (50% off). (I don't think there are subsidies past the first child.) The subsidy is because of a birth rate so low that they're in for a demographic disaster and they know it. The cheapness, I think, relates to a few factors: first, the medical system here is much less boutique-y. When I went to the fertility doc for e.g., egg retrieval, I sat in a group of six gowned women all waiting together, and we were ushered in one by one for our date with the Big Needle. Then we lay side by side on cots in one big room during recovery. There was none of that nice general anaesthesia that IVF patients in the US seem to get (and can I say OUCH?!), and wait times to see the doctor were often an hour or three. This was all fine with me. The quality of care itself was excellent (other than the whole anaestheseia issue, did I say OUCH!?) but the doctors could see about 10x as many patients per hour than an American doctor. The drugs were also cheaper, and they did much less monitoring (I didn't have a blood test until my pregnancy test, for example). The live birth rates are equivalent. The other factor is that doctors are paid less. They're still relatively wealthy, but not multi-gazillionaires like most American fertility docs.

Now the seamy side--they transfer huge numbers of embryos. I know a woman who got 8 embryos transferred at 32. They transferred four on my first IVF (at 37) before giving me the chance to object (I would have agreed to three, but not four, and would have preferred two). I haven't seen any higher-order-multiples walking around, so I'm assuming that they rely on selective reduction in cases where too many embryos implant. (Which mainly bothers me because they don't warn the potential parents that this might happen, and allow the potential parents to make an informed choice while there is still time to prevent a higher-order-multiple pregnancy.)

Patients in Korea also often get hit with pretty substantial copays. I think I spent about $2000 on prenatal care above what the national health plan provided (that was thanks in part to being an old fart too, though). I think that some provision is made for the very poor, though.

All in all, it's a good system. I bring it up whenever people tells me that national health systems are no good. It's not perfect, but it's way better than anything available in the US. (And I know that you know this, but Korea is a rich country, so their standards of care are high.) I think that American politicians would do well to consider Korea in their thinking about health care reform.

As for frivolity, I have never met a more frivolous people when it comes to personal appearance (which my Korean friends freely acknowledge). Korea has the highest plastic surgery rate in the world (the most popular surgery is eyelid surgery to add an epicanthial fold). Anyone with any money at all is expected to flaunt it in the form of expensive clothes, cars, jewels, etc. Toddlers of wealthy parents almost universally wear designer clothing. Every elevator is covered with mirrors, and people immediately turn to face the mirror and start primping the second they enter. The women's university near my home has a "powder room" in the cafeteria--just a big space with hair driers, curling irons, flat irons, and mirrors everywhere for the young women to primp. No socialist paradise, this.

The national health plan doesn't pay for the plastic surgeries, obviously.

Here is where I feel the hostility (even if you don't at all intend it): "About women spending $100,000 to get pregnant? Or $15,000 to choose hair color? Not so much angry as horrified, I suppose, at what appear to be their values." Would you spend $100,000 to save your child's life? Even though the same amount of money could save the lives of countless children in poorer countries? If so, then who are you to judge? I didn't spend anything like $100,000 on ART, so I don't feel personally attacked. I've never had $100,000 or anything like that to spend. But here's the thing, the "values" underlying the decision to prioritize having a child are almost a human universal. Poor people, people of color, people with no access to health care, also often place a very high priority on having children. In my husband's country, being infertile is considered an absolute catastrophe. We actually kept our own situation from my in-laws, who live in a wood hut without electricity or plumbing (there is no grid in the area), for fear that they would be devastated (and I admit, also on my part for fear that they would put pressure on my husband to divorce me, since the woman is always to blame in their culture; I wasn't afraid that he would divorce me, but that kind of behavior would have caused a rift in the family for sure). We know a childless couple there--they're rich, but everybody, even the poorest family in the village, living in their 3-meter-square hut with about 10 kids, pities them. In fact, the same poorest family in the village was formed when the husband left his first wife because they didn't have children (that woman's fate haunts me).

So, when you criticize people for spending $100,000 on ART, do try to keep in mind that the only thing that sets those people apart from most poor infertile people that don't spend $100,000 is that they have the means to do so.

It's not always about being in love with your own genes. My genes are pretty crappy, as I've acknowledged in previous comments. I just wanted a child. Just like you. As you know, there's nothing sacred or noble about adoption vs. birth. They're just two different ways of forming a family.

Is it my responsibility to take every extra penny that I have and give it to someone less fortunate, rather than spending it on ART? I think you should look around your own household and bank account if you believe that. Surely there is more that you can give also. I send approximately 30% of our family's income to my in-laws, even though my family of three is living in a one-room apartment, and has for the last three years. I have spent, and continue to spend, much more on my young siblings-in-law's schooling than I did on ART. My conscience is pretty OK about my choices. And if I had $100,000 in the first place? I might very well have spent a hefty chunk of it on ART, if it came to that. I won't apologize for that, because I'm not sorry. I just wish that we lived in a world where everyone had $100,000 to spend however they see fit.

[Sara]

This is on another topic, but it has more or less the same basic point, and is better-written than anything that I can say:

http://alannashaikh.blogspot.com/2008/09/suffering-does-not-make-you-special.html

[Shannon]

Sara, the $100,000 figure came from Jody's comment asking if I was angry that some womenare spending that while others have no access to care. And I tried to make it very clear that I am not in a position to judge any individual's deciison, but sure, teh disparity of that sucks and I would wonder about the values involved in that decision. ART does not save the life of an existing child, so that's not a reasonable comparison.

I am well aware that women in many cultures--including our own to a certain extent--are reviled for their failure to have a baby. I am also not interested in what you spend your money on (you, personally, Sara). What I'm interested in is how our society allocates resources when it comes to health care. It seemed like you were very down on a "socialist overthrow" of the health system, while praising a national health system in another country. I would advocate for a system similar to what you describe--in which frivolous choices (like plastic surgery you mention) are not covered. I also feel quite strongly that the profit should be more or less entirely removed from the system. If, for example, doctors were more or less required to inform patients of any knowable facts about their embryos, but were not allowed to profit from the testing and telling, that would be a better system to me than one in which an extra 15K gets you extra information.

Me, I wish we lived in a world not where everyone had $100K to blow, but in which money mattered less, because people's quality of life was universally pretty good without it.

[Sara]

I just reread my previous comment, and I fear that I was rude in asking you to examine your own lifestyle. My point was that it's very easy to go through someone else's budget and find frivolous waste, but when it is one's own family in question, every dollar seems well-spent, but I said it very badly and in a potentially hurtful way, and I'm sorry. I regret my rudeness, which was unintentional.

You misunderstood my comment about a socialist overthrow. I am 100% in favor of a national health system, have always been, and am more than willing to pay for other people's care to the extent that I can afford it. My point was that we cannot simply appropriate the money that you consider to be excessive from other people's budgets (for things that they may not regard as excessive) based on whether their choices are "legitimate" or not without a radical change in our economic and political structure that goes way beyond health care reform. Whether that would be good or bad is purely academic, because it isn't going to happen in our lifetimes. However, restriction of ART might very well happen, for reasons that have nothing to do with allocation of resources and everything to do with the self-righteousness of other people (I don't mean you, really) of people who have never had to contend with infertility and are scornful of those that have. They are vocal and in many cases active, and I fear the harm that they may do to people like me, who are just trying to get through the day and do our best to be decent people while not sacrificing every iota of our own happiness.

Bottom line for me: I would love to live in a just world, and am willing to fight and make sacrifices to try to address some of the injustices in the world, but I just don't think restricting ART is the way to get from here to there.

About the saving a child's life for $100,000 metaphor, my point was that each of us cares somewhat more about our own family (however defined) than we do about strangers. It's natural and normal. I have learned the hard way that it is pretty close to impossible to be happy when you feel like there is someone missing from your family. I guess I shouldn't really expect you to understand exactly what I'm talking about. I probably didn't understand it myself before I walked too many miles in my own shoes.

Anyway, it's clear that I need a time out. Thanks for listening, and again, I'm sorry if I was impolite.