A Conversation Worth Having

When I was in high school and college I was subject to a gazillion courses in bioethics.  At the time, IVF was newish, egg donation was mostly theoretical, right-to-die folks were just starting to get noisy, the human genome was only just beginning to be mapped, etc.  I spent countless hours in discussions with far more conservative peers, arguing mostly for a great deal of freedom for the uses of new medical technologies and research (including research using human embryos).

So imagine my surprise when my recent post at Strollerderby about a new for-profit offering at a fertility clinic, allowing parents to use PGD to determine a child's hair and eye color, was met with a big shrug.  Most commenters seemed to feel that hey, it's a free market.  And of course, IVF being a massive undertaking--only done by the medically in need, at great pain and suffering and expense--this procedure isn't going to be sought by many and thus will have very little impact on society.

Well of course.  This procedure.  At this moment.  But that doesn't mean we should just accept it and move on.  The fact that huge expense goes into developing something so--frankly--stupid as hair and eye color selection and it is offered in a free market to medical consumers is a travesty in my opinion.  No it won't impact the gene pool (which fact plenty of people don't seem to understand and is another problem with the lack of discussion) and no, banning it won't automatically cause money to spent elsewhere.

But unlike Barack Obama, I'm a socialist--at least about a great many things.  And it seems more than obvious to me that a free market approach to medicine has failed miserably in the United States.  It's time to pull in the reins on the race to the ethical bottom (octuplets, anyone?) and the excessive gap between rich and poor people's access to medicine.  Taking a good look at high-cost fertility treatment that forces people to mortgage their homes for a 5% shot at having a baby seems reasonable to me, when we re-evaluate how our society allocates spending.

And I am not talking about banning fertility treatment.  It seems like in some corners, if you say "regulate" and "fertility treatment" anywhere within 100 words of each other, people jump to assume they will no longer be allowed to do those high-end procedures.  I am hardly suggesting that.  In fact, I think that any public health coverage should include fertility treatment--including IVF, including PGD when medically called for--which is considerably more than most private insurance plans do for us now.  But if we are going to provide fertility coverage to everyone, we are going to need to make the expenses reasonable.  Why not include in any new health plan, caps on pricing for treatments and drugs like many countries have now?  Why not put a maximum on the profit a doctor can make with this stuff?  How could regulating that kind of thing not help infertile people who need the treatment?

Look, I'm not interested in ever getting pregnant myself.  But I'm happy to pony up some percentage of my tax money so that you folks who are interested and need help with it can get that help even if you aren't rich, without going into monumental debt.  But I'm not paying so some fool doctor in LA can line his pockets with cash from people who know no better than to think it's a good idea to custom order a baby by looks.  And I'd like to see the incentives to a doctor to offer that sort of thing drastically reduced--by, for example, making it illegal to charge anything extra for that kind of service.  That would also reduce the R&D incentives to go finding those genes in the first place.  The market is not a force of nature.  Plenty of people outside the United States know this.  It is time U.S. Americans realized it and started taking some responsibility for where the market goes next.

Let's focus on curing cancer, not filling the prep schools of tomorrow with customized kids.

Comments

[Debbie]

I definitely agree with you on this stuff.

But as a partnered lesbian who plans on getting knocked up via a sperm donor, I have to admit that I had some selfish thoughts when reading about the possibility of selecting a bit for a child's looks. My partner is really anxious about not looking like our kids, and if we could choose her eye and hair color for the babies, we would totally consider it. Obviously not at the expense of a cure for cancer. And clearly she'll get over it if I end up giving birth to a redhead. My point is only that there may be a few non-nefarious uses for the technology.

[Shannon]

It's not that I think it's terribly nefarious to choose hair color. It's that I think it's a hideous waste of money (and other resources) to pursue it. Of course everyone will have their reasons for wanting to do it (if they indeed do want to do it), and some will seem more reasonable than others. But as a transracially adoptive parent, I'm here to tell you your kid doesn't have to look like you to feel a parental bond.

[Sara]

I posted at Strollerderby and will post here too. I totally agree that it's a ridiculous waste of money, but I still can't get worked up about it. I just can't. People will waste money on ridiculous things as long as they have money to waste, and this one strikes me as not necessarily harmless, given that these people will be paying a fortune to get nothing of value, but harmless to uninterested 3rd parties, and therefore none of my business.

Now subsidized IVF and controls on the pricing of IVF (and other medical care, for that matter) are things that I can definitely get worked up about, so if that's all that you're saying then hear hear!

My concern about regulations on IVF is that it is just about impossible to set up regulations (as opposed to guidelines) that won't leave someone out in the cold. Being a person that frequently seems to fall between the cracks in poorly written regulations (try applying for a visa for someone without a "family name" if you want to have a little fun with bureaucracy), I find that alarming.

[Shannon]

I see no reason why "regulation" can't include some kind of advisory board process for evaluating people who may need to proceed outside the usual protocol. Obviously non-binding guidelines aren't working in this industry.

I also absolutely insist that the values that allow for frivilous wasteful spending--not just by individual patients--but by the whole of a field in its R&D and in clinic setup, etc. is antithetical to the values that would cover everyone.

The difference between a designer handbag and PGD for eye color is that the medical establishment is behind one and not the other. We will need the medical establishment to support sensible approaches if we want everyone taken care of. And we will have to pick and choose what basic values we want to use as guiding forces in medical decision making at every level including all the decisions that lead up to the availability of patient choices.

[PPR_Scribe]

What about parents who want to make their children look "less ethnic" so as to not suffer as much social stigma? What about parents who choose not to genetically "fix" conditions, and thus are looked at askance when they seek services for their children? What about a parent who loves cats and thus wants his child to look like his champion felines? Or another who wants a baby who will grow up to look like Angelina Jolie?

This is most certainly a bioethical issue, and am important one. The way that this kind of thing slips under the radar with very little discussion or consideration reveals a kind of incremental technological change that is difficult to monitor.

[B mama]

I absolutely agree with you Shannon. There should be NO reason why this should even be a possibility for people. Oh, I can understand why this would be a preference for some parents, I guess . . . but they should be counseled about why it's an unreasonable preference. One should not be allowed to design a baby. Period.

[Debbie]

Being the one who piped up that I wouldn't mind selecting for a baby that shared the non-biological mother's hair and eye color, I'm feeling the need to weigh in again.

First of all, I just want to make it clear that I agree that this is a VERY LOW medical priority. And I think putting some cap on the profits a doctor could make on it is a genius idea.

But the fact is that those of us who choose to give birth design our children when we select a mate (or sperm). We are also constantly re-designing ourselves once we're born: Think of all the hair-dying, dieting, colored contact lenses, high heels, and plastic surgery in the world! And so, even though I agree that it's a total waste of resources and money, and even though I do think it is kind of creepy, I do not think choosing hair and eye color before birth is too much worse than doing it afterward.

I am also fundamentally opposed to putting limits on science. That's why the idea of profit caps is such a neat one. I would much sooner say: "Sure, go ahead, work on selecting for green-eyed babies, but it's not going to make you any money." than I would say: "It is illegal to select for green-eyed babies."

[Shannon]

I agree that it's a bad idea to put too many limits on science itself. And probably pretty difficult in any case. But we do make all kinds of choices that push research in one direction or another.

I have to say though, that dyeing one's own hair is fundamentally different from selecting hair color for one's baby. I have to wonder how knowledge of that kind of selection might effect family relationships down the road. Esp. if one were to pick the redhead first, freeze the brunette and use it late. How would it feel to know you might not have ever been born based on having the "wrong" hair color--when your older sibling has the "right" one?

[Jody]

I agree, these are worthwhile bioethical debates. I'm sorry if I implied at StrollerDerby that there was no reason to consider the question. But I'm not convinced (a) that the practice is going to be so widespread that it deserves a seat at the main table of infertility-treatment debate; or (b) that there's anything much we can do about it without imposing costs greater than the benefits.

When we discuss the ethics here, I want to see a detailed list of the problems created by parents selecting for appearance clearly enumerated. Do we think it's going to solidify or increase certain kinds of racism in society as a whole? Is it part of a slippery slope down which we find selection for certain kinds of academic or social traits? Do we think we tackle the implied judgments about human value from the reproductive end first? And how do we balance those concerns with Pinker's point, about the essential mystery of our genes and how they're expressed?

Plus, what regulatory scheme should we consider? How would we enforce it? How difficult would the creation of those regulations be, and would they be justified or not, based on the numbers of people taking advantage of these technologies?

We already have some experience with this debate, because we know that people doing amnios and CVS are checking for sex-selection. Fifteen years ago, doctors doing selective reduction in high-order multiple pregnancies wouldn't consider sex selection when deciding which fetus to reduce. Now they do. I'm sure that women in certain communities in the USA are pressured to have abortions when they find out they're not carrying boys. We've tended to assume that that's a cost we're willing to pay for everyone else to enjoy reproductive freedom.

As far as I can tell, no one spent money on developing PGD for eye color, etc. They just combined one worthy technology (the human genome project) with another worthy technology (PGD) and came up with a new product that a subset of potential parents desires. So the argument about research costs strikes me as moot.

When I've read your posts on this, I've heard some direct, personal concerns for you: that people discount your family's emotional bonds because your daughters don't look like you; they discount your daughters' beauty because they don't fit the blonde/blue-eyed ideal. Whenever you do a post about how much better Chicago has been, I can almost feel the weight of all the social pressures you experienced before you moved, based on all the ways that your family didn't fit "the norm." I totally see why you care so passionately about this. I want to change the world and make it better about these things, too.

But, I think the market for appearance-based PGD testing is a reflection of those social problems -- it's a symptom, not a cause, which of course you know. And I'm not convinced that a regulatory scheme around PGD would change anything, not social attitudes and not what people who sufficient desire and money could obtain during their fertility treatments.

To get back to your policy points: Yes, there should be insurance coverage and the regulation that goes with that. Yes, that regulation could include coverage caps. But how would that change anything? Most of the people doing PGD right now have no insurance coverage. I suppose we could ban any PGD testing except in cases of medical necessity. Should we also ban sex selection? I would assume the answer is yes. Do you really think there's any support in the US for those kinds of limits? I'm not convinced that they're are, or even that there should be.

[Shannon]

Great thoughts to include in this discussion, Jody. Off the top of my head, I'd have to say that sure, rich people with a strong enough desire will pretty much always find a way to get what they want.

But that doesn't mean we shouldn't move away from endorsing choices we find problematic, actively or passively.

And this is definitely personal, from the perspective of being a A) non-reproducing couple B) an adoptive family C) a racially mixed family etc. etc.

And I 100% agree that the biases of a culture towards blonde hair don't begin at the reproductive end of things. Just like unethical practices in adoption don't begin at the moment of placement.

But that doesn't mean we shouldn't make reproduction (and adoptive placements) as "right" as we can. And regulating reproductive technology practices is a heck of a lot simpler than changing society's biases. It wouldn't hurt though, to make it clear that we are a society that doesn't accept those biases as okay by allowing for embryo selection on that basis.

[Rachel]

It's a generally recognized consensus that proper parenting includes allowing a child to figure out who he or she is for him or herself, with structured guidance from a parent as opposed to controlling the child's every move. We've all seen examples of both approaches in our time I'm sure, as well as some of the results.

I would argue that once a parent exerts the kind of control that deciding characteristics at conception creates, the parent is proclaiming an ownership over that human being's personhood that is very, very psychologically dangerous for everyone involved.

I have enormous amounts of sympathy for people who are worried about a kid not looking like them. I knew an African-American mom-to-be who was worried that her kid would look more like her Hispanic husband than her, and that therefore people wouldn't know she was the mom. But that fear was all about her and her insecurities, not about who the baby was. In the end, anyone who's worried about a kid not looking like them isn't thinking about the kid, they're thinking about themselves. Very human, but making decisions for a child based on those parameters is not good for the kid.

[Lula]

If I grew up knowing that my parents deliberately designed my appearance, I would be seriously creeped out and think less of them as people. Ditto for if I found that out as an adult.

Too early yet to take an opinion poll of the people created with such technology, but worth a thought. How would *you* feel about it, if you'd been so engineered?

[Sara]

Shannon-If medical ethics are somehow removable from our consumer society, shall we outlaw cosmetic surgery while we're at it? In many cases, plastic surgery, botox, etc. also reflect some seriously warped values that are hard to address. Personally, I think that this would make a much stronger statement than regulating reproductive technology.

Honestly, I think that there is a bit of misogyny in society's obsession with trying to control reproduction. Yes, it does involve innocent children, but parents that have their kids the old-fashioned way make all kinds of potentially destructive choices for their children (think circumcision, plastic surgeries on small children, ear-piercing, diets, etc.) that don't seem to raise the same kinds of hysteria as decisions involving reproduction itself, yet are the results of the same societal pressures, and raise the same kinds of ethical dilemmas.

Regarding the issue of resemblance between parent and child--that is definitely a knife that can (doesn't always, but CAN) cut both ways. My genetic child looks nothing at all like me--to the point that several strangers have asked me when or where I adopted her. I don't care--I think she's beautiful and perfect and thank God every day that she is exactly the way that she is. However, I do worry that comments from other people may bother her later on. "Resemblance talk" is a big part of many people's experience, and it can be as hard on the children as the parents.

I admit that I am very concerned about the idea of adding additional restrictions on the use of available technologies in assisted reproduction for deeply personal reasons. As a person who has been through the infertility/IVF wringer, I am painfully aware of how many barriers to infertility treatment already exist. Infertility and ART are incredibly misunderstood by people, including well-meaning people, who have no direct experience of them, and the right-to-life lobby is trying hard to use the Suleiman case to drive through regulations that will make it almost impossible to effectively treat many infertile couples, while not addressing the primary cause of higher-order multiples. Some of these regulations could pass, simply because people in general are so ignorant about the biological and medical issues involved. It's easy to get on an ethical high horse about things that you don't really understand (please don't misunderstand me--that statement certainly isn't pointed at any of the thoughtful participants in THIS discussion! I), and ART is just such an easy target.

However, back to the matter at hand. Let me give you an example of how I think this kind of regulation could open up an ethical quagmire. Imagine a couple that have had one child and five miscarriages. They know the reason for their miscarriages--it's a gene that they both carry that is dominant and that is lethal in the homozygous condition. So, they want to do PGD to select for embryos that don't carry that gene. Fair enough, right? OK, now imagine that the gene causes some other differences between carriers (i.e., people who carry one, but not two copies of the gene) and non-carriers. These differences don't cause illness, but are visible. By testing the embryos, the parents/doctors will inevitably learn which of the embryos carry the condition and which are not carriers. Should the parents be allowed to select non-carriers over carriers, given that they are all perfectly healthy? Alternatively, should they be allowed to select carriers? What if the child that they already have is a carrier? Should they be forced to accept a non-carrier even though it means that they will have to tell the child that they already have that he/she is less worthy/valuable than a non-carrier? (Remember that the condition isn't an illness.) Who gets to decide? I'm thinking of achondroplasia (also known as achondroplastic dwarfism--think "Little People, Big World"). Should small parents be forced to choose tall children, even though they may be much harder to parent, given the height discrepancy? Should they be forced to choose small children? Should they be forced not to choose? I honestly don't know. The idea of forcing them to choose one option or the other makes me feel decidedly uncomfortable, but the idea of refusing to let them choose, given that they have already resorted to PGD seems cruel also. (Of course, they could continue to just risk repeated miscarriage as well, but surely nobody thinks THAT is the ethical option if the parents want to and can afford to use PGD.) Do you really think that an ethics board, which will almost certainly consist of 100% tall people, can really understand the issues involved better than the parents themselves?

I know that is a far cry from hair color and eye color, but once you start to make rules about "cosmetic" issues, I do think that the slope gets pretty slippery in a hurry.