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Pro-Choice Means Pro Which Choices?

Debbie says:

Kay Olson at The Gimp Parade links, without much comment, to this fascinating article from this summer’s issue of Dissent.

In this article, author Rebecca Tuhus-Dubrow takes on the issue that she calls “designer babies”: basically, the point that parents choosing IVF can right now make a lot of choices about what genetic characteristics they do (or more often don’t) want their children to have, and the menu of choices is likely to grow significantly in the near future.

Initially, preimplantation genetic diagnosis (PGD) targeted severe childhood diseases, such as Tay-Sachs and sickle cell anemia. Now, more parents use it to screen out genes for late-onset, treatable diseases, such as colon cancer; sex selection is also popular. According to a 2006 survey conducted by the Genetics and Public Policy Center at Johns Hopkins University, 42 percent of 137 IVF-PGD clinics allowed parents to select for gender. Scientists predict that parents will be able to choose such characteristics as blue eyes or curly hair. Less certain, but plausible, is that scientists will be able to identify genes for more complex traits, such as intelligence and homosexuality. Genetic engineering, which will enable not merely the selection but the insertion of desired genes, is on the horizon. In the United States, this rapidly advancing technology is unchecked by any regulatory mechanism.

Tuhus-Dubrow’s main point is not that this is happening, but that the advocates of gene-selected (or “reprogenetic”) babies are using the rhetoric of the pro-choice movement (“‘It’s about Reproductive Rights, Stupid,’ reads the title of an article on the Web site betterhumans.com, which promotes the use of biotechnologies to improve the human species.”) Perhaps more to the point, she says, even without the rhetoric, the issues are inherently intertwined.

Historically, pro-choice arguments have focused on the right to privacy and freedom from government interference. Legally, those are the terms that define reproductive rights. The landmark Supreme Court cases Connecticut v. Griswold (1965) and Roe v. Wade (1973) recognized the right of individuals to control their reproductive destinies. Legal scholars predict that when the question of selecting the traits of offspring inevitably arrives in court, it will be considered in this framework..

This is going to make a lot of pro-choice activists, including me, squirm. The article goes on to report on recent developments in feminism, and criticism of the word (and the concept) of “choice” as a rallying cry. Nonetheless, many of us have been defending “choice” for a long time, in reproductive rights and other arenas. And truly, it’s a fascinating question: what is the difference between choosing whether and when to give birth to and raise a baby, and choosing details of that baby’s biology?

Here are two intelligent potential answers, from late in Tuhus-Dubrow’s article:

The first and least controversial task for pro-choice activists, then, is to make it very clear that the rights for which they have fought are fundamentally different from the right to determine the genetic makeup of offspring. Whether the latter right is legitimate or not, it is not the same as or an extension of the former. Pro-choice activists have struggled for women’s freedom to control their own lives and bodies, not to control the lives and bodies of their children.

As an alternative to “choice,” women of color have created the concept of “reproductive justice.” Loretta Ross [a reproductive justice activist] defines the term, coined in 1994, as “(1) the right to have a child; (2) the right not to have a child; (3) the right to parent the children we have . . . . We also fight for the necessary enabling conditions to realize these rights.” This more comprehensive notion of reproductive justice can be useful in confronting the issue of designer babies.

Another possibility is that the current pro-choice movement will divide over this issue. A lot of us may have immediate reactions against the concept of reprogenetics, and at the same time, I can’t say that I think it’s an entirely bad idea. The prospect of millions of thin, white, blonde, heterosexual, blue-eyed babies makes me sick to my stomach, but I would not be unhappy to see Tay-Sachs Disease, or sickle-cell, or cystic fibrosis eliminated in some painless fashion. And not everyone will agree with me about going that far.

Kay at The Gimp Parade points out that the article does not contend very directly with issues of disability and disability activism, but you know this is an area in which the disability activists will have a lot of thoughts, a lot of feelings, and a lot of energy to fight for what they believe in. Do we really want genetic disability eliminated from our society? And how would we define “disability”?

Also, of course, IVF is extremely expensive, which adds the inevitable class dimension to the conversation: we could, not too long from now, become a nation–or a world–in which rich kids are protected from a range of diseases, conditions, and traits which poor kids get as the luck of the draw. And until we fix the U.S. health care system, “poor” is rapidly expanding to cover most of what has traditionally been the middle class, especially in the context of of expensive health interventions.

None of the really scary aspects of this story are going to happen tomorrow. The things that can be genetically screened out are limited, and more important, the number of IVF births is low, although not as low as I would have guessed (3 million births in 28 years). But Tuhus-Dubrow is right: reproductive rights activists need to be thinking now about where we stand on these issues, and why.

At the same time, while we’re fighting against the growing belief that cosmetic plastic surgery, vaginal reconstruction, liposuction, cosmetic Botox, and dozens of other “feel-good” options are self-empowering and therefore “feminist,” we probably going to meet a lot of resistance when we try to convince proud parents that “perfect is the enemy of good.”

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27 Responses to “Pro-Choice Means Pro Which Choices?”

  1. jadelennox says:

    but I would not be unhappy to see Tay-Sachs Disease, or sickle-cell, or cystic fibrosis eliminated in some painless fashion. And not everyone will agree with me about going that far.

    Anyone who doesn’t think Tay-Sachs should be eliminated can come spend a week with my family. And if they still don’t think it, they’ve just revealed something despicable about their value systems.

  2. betsyl says:

    you know this is an area in which the disability activists will have […] a lot of energy to fight for what they believe in.

    ha. maybe after my nap. ;)

    this is something that i’ve been struggling with, actually. being as i am planning on adopting. which means that you can, in fact, select really a lot of things about your future kid. i want a relatively healthy infant, but what does that mean? does it mean tall, white, heterosexual, intelligent? noooo. i think that in my case, i’ve decided that it means “doesn’t require more specialists than i do”. different specialists is fine, though.

  3. AnonymousAndCo says:

    I wonder what the odds are of any of these people who talk about PGD ever having to actually choose whether or not to use it. They never talk about having multiple miscarriages, or giving birth to deformed babies. Maybe they read the stories, talk to the parents agonizing over whether or not they should try to have another child, one that might be genetically normal. Maybe they should talk to people who desperately want a genetic connection to their child. Maybe they should read the stories of women having to collect and bring in the bloody clots they’ve just passed to see if it’s the fetus they’d hoped to bring into the world a few months hence.

    And by the bye, unless you’re adopting out of foster care, IVF is a good $5K-$10K cheaper that domestic adoption, even more than International adoption. Frozen Embryo Transfers run $3K-$5K per cycle, while a single surrogacy cycle can be up to $40K. PGD isn’t cheap, either.

    IVF is hardly a frickin’ gaurantee of pregnancy, and even if you do get pregnant, your chances of carrying to term generally run between 15% – 40%, depending on age and aggressiveness of treatment (which of course also depends on male and female factors).

    No one does IVF for fun. We do it because we want a child.

  4. betsyl says:

    um. not sure if you brought this up in response to me or not, but to clarify, i am not adopting because i think it’d be cheaper than getting pregnant even if getting pregnant involved ivf. i have a whole list of reasons why i’m adopting, but “because i thought it’d be cheaper” was never one of them.

  5. Lynn Kendall says:

    This is very complicated. I’ve seen the stress, individual and familial, of certain genetic conditions first-hand. Several of my friends have had autistic children — not just Asperger’s, but full-fledged, low-functioning autism, beautiful boys who would never be able to speak. I saw one friend’s life devoured by her son’s disability. It didn’t help her other offspring, and her husband abdicated completely. Our communities and our health-care systems are not set up to deal with people who have huge burdens, or even normal needs and not a lot of money.

    At the same time, I also know people who have heartbreaking genetic disabilities or congenital conditions but whose lives are rich, loving, and worthwhile. I would never say that my blind friends don’t deserve to live. I used to know someone whose mother took Thalidomide during the pregnancy. Would my friend have been better off aborted? Zie certainly didn’t think so.

    Another issue is that we have no idea of what constitutes genetic perfection. The genes for even minor disabilities buck teeth or clumsiness or homosexuality may end up being valuable defenses against evolving diseases. My mother’s notoriously inbred family runs high toward fertility, fatness, intelligence and longevity, but it also results in horrific allergies. Is the overactive immune response linked in some way to the other traits? Could be.

    Even genes that carry much more serious, even lethal genetic conditions can be useful because of heterozygote advantage. One copy of the recessive gene protects the carrier against an endemic disease, whereas no copies expose the person to the risk of early death from disease, and two copies mean a genetic disease quite as lethal as the endemic disease.

    Sickle-cell and thalassemia genes survive because having one copy of those genes protects a person from malaria–still endemic in the African countries where sickle-cell is common. Hematochromatosis is similar: one copy of the gene protects against plague but two will overwhelm the system with retained iron. And the gene for cystic fibrosis, horrible as it is, seems to protect carriers from fluid loss related to diarrhea. In a world of cholera, salmonella, and assorted stomach bugs, that protection can be crucial to survival.

    Making the genetic pool less diverse and more uniform sets us up for situations like the Potato Blight in ireland, where many and then nearly all of the potato plants all succumbed to a disease that left them rotting in the fields. Millions starved. (Oh joy — the late potato blight is back, and this time it’s tougher.) The coming banana disaster is a similar problem.

    There are also the political and social issues that follow from gender-based selection of which fetuses to bring to term. Most often, gender selection results in aborting or killing daughters, because sons offer an economic advantage. Female infanticide in late nineteenth century China contributed to the Boxer Rebellion, which was stirred up by legions of young men who could never marry, because the women of their generation had been quietly killed at birth. Similar things are happening now in India.

    I don’t have any answers, beyond what I always offer: education, community, and a change in attitudes toward women.

  6. Nolly says:

    I’m reminded of this story on Strange Horizons.

  7. Stef says:

    Pro-choice activists have struggled for women’s freedom to control their own lives and bodies, not to control the lives and bodies of their children.

    Many people have long considered abortion a legitimate option in the case of serious genetic conditions that can be detected during pregnancy, such as Down Syndrome. Which isn’t “controlling children” so much as limiting the possibility of a single disability.

    But yes, it could be a slippery slope. Darn whoever came up with the term “pro-choice” anyway—if we’d had the ovaries to call it “abortion rights” from the get-go, maybe we wouldn’t feel implicated in spawning all sorts of other sickening marketing trends that ride on the coat-tails of “choice.”

    we could, not too long from now, become a nation–or a world–in which rich kids are protected from a range of diseases, conditions, and traits which poor kids get as the luck of the draw.

    Remove “as the luck of the draw,” and that’s the way the nation is already.

  8. Lizzy L says:

    Debbie’s post, and the comments above, clarify the difficulties in the issue quite neatly. I am reasonably certain that most of us here would not wish to force a woman to bear a child whom she knows is going to have Tay-Sachs, for example. But applying consumer morality (or its absence) to the choice of having children terrifies me. Is it moral to end a pregnancy because the child is female, and you want a male? How about if the child has diabetes? How about if the child has a gene for heart disease? Or green eyes, and you want blue? I have to say know. Is there a difference between the two sets of choices? I don’t have a comfortable answer.

  9. Lizzy L says:

    Sorry, that should have read, “I have to say No.” But the slip is telling. It is tempting to think that if we could only know more, we would find a comfortable choice. But in this case I think more knowledge will not change the nature of the moral question: granted legal choice (which I absolutely support) — is it moral to abort a pregnancy because you want a boy, not a girl, or blue eyes instead of green eyes? And if it isn’t — why not?

  10. AnonymousAndCo says:

    Betsy, no, I wasn’t responding to you!!! Obviously I get really het up about reproductive issues because there are just so many assumptions about the people who choose to follow non-tradtional ways of making family.

    And last night I was kinda just flurbled on without regard to any other commenter. Giving it some more thought, I still stand by what I say, but with the added caveat that yes, I do honestly understand the concerns people have about PGD. Some still have the same perceptions about IVF, and unfortunately many only see the Master Race without actually taking into account how difficult the process actually. If you really want to control the process, then you absolutely must have standards that doctors *must* abide by – you’d be pretty horrified at what already goes on (hello, unmonitored IUI cycles, hello, doctors who flat out lie to their patients). If I ran the world, PGD would be available only to infertile patients, those with a history of genetic diseases such as Tay-Sachs, and those for whom subsequent pregnancies end in disaster (see blog: Awful But Functioning, the Science Lesson post) and no one else.

    I don’t want designer babies either, but to say no to PGD is to ignore all those for whom it is absolutely necessary.

  11. …what is the difference between choosing whether and when to give birth to and raise a baby, and choosing details of that baby’s biology?

    Surely there is an obvious difference: The first is making a decision about your own destiny; the latter is making a decision about someone else’s.

  12. mshell67 says:

    I don’t think a woman should be prevented from having an abortion for any reason, it’s her body, it’s her choice.

  13. Debbie says:

    I’m loving this comment thread. Lots of information, lots of opinions, and no name-calling. Maybe we have something (else) to teach the Internet?

    At any rate: Betsy, I love “doesn’t require more specialists than I do.”

    Anonymous & Co., I in no way intended to denigrate IVF. It’s the choices that stem from IVF that I’m interested in, and I haven’t come to conclusions on those either.

    Lynn, especially useful points about the evolutionary value of sickle-cell and cystic fibrosis, something I’m embarrassed to say I not only didn’t know but had never really thought about.

    Stef, yes. And it can get a lot worse than it is now, bad as it seems.

    Lizzy, I think the “consumer morality” point is very well taken. Thinking about these issues as the line between ethical choices and consumer choices is helpful to me.

    Anonymous & Co., thanks for coming back in and clarifying. I agree with everything you say. If you run for dictator, I’ll vote for you.

    Dan’l, that “obvious difference” is something you and I agree on, and an awful lot of people disagree about, which makes me wonder if it’s actually “obvious.”

    mshell, yes.

  14. Lizzy L says:

    mshell67, I don’t think anyone in the comments is arguing that women should be prevented from having an abortion. The issue, it seems to me, is, are all abortions justified? Again, I am not, really not, talking about the state stomping in and preventing a woman from having an abortion. Rather, I believe we are looking at the nature of the issues which women may consider in making such a choice. Believe me, I am not taking this lightly — I know what a difficult and painful choice this can be. Is there any situation in which a woman might say to herself, it is not ethical for me to abort this pregnancy? If so, might those ethical issues also exist for the community at large? Is it okay to abort a pregnancy only because a fetus is female, and you want a male child? How about, if your husband wants a male child? Or your father-in-law?

  15. Orodemniades says:

    Okay, I’m going to take the plunge and start posting under my ‘real’ nick rather than AnonymousAndCo, because these issues are really important to me and I don’t want anyone to think I’m too chicken (although I totally am) to respond to replies without returning here. And, honestly, it’s also important to me to be available and to have available resources (blogrolls, etc) so that anyone (male or female) who has or is concerned about these issues has a place to start. Wow, that was a lot to write.

    As to the abortion issue…this comes up quite frequently on Infertility Island because of the very nature of being infertile. I feel fairly confident in saying that the majority of infertiles believe that abortion/termination, while horrible and unpleasant at best, can absolutely be the right choice. Now, having said that, there are people who believe that it is absolutely the wrong choice no matter what – even if the mother’s life is in danger (I’d post the urls to some excellent posts on the subject, except I can’t remember the name of the blog it happened on, but I’m thinking of Cecily and her twins and the nightmare she went through with them).

    Now, for the personal bit. After trying to get pregnant for 8 years, after being rejected by several clinics because of BMI, after having to move countries, after finally having my first IVF, Mr Oro and I are pregnant. At the beginning, we were pretty gungho on all the testing apart from Amniocentesis. But, y’know, that was when I was 31. I’m 39 now, this is my first pregnancy, this might be the only child I ever have and I’m not willing to take any chances of a miscarriage – no matter what. Does this mean I’m not terrified I’ll have a baby with trisomy 13, 18, or 21 (Downs)? Well, I am. Sorta. Not all that much with Downs, to be honest, because you never know how that child is going to turn out. You could have a child who can live on their own or one who’s going to be institutionalized, you just don’t know. I figure for anything else that might happen we’ll just see how we deal with it.

    We all know that females are missing around the world. One has to wonder, is it better to abort in utero due to gender selection – as is increasingly common in some countries or to go 9 months and then lay the unwanted baby on a rubbish heap? Personally speaking, neither is okay to me, and yet I have to wonder, for the mother’s sake, wouldn’t the former be “better” or “more acceptible”?

    Having said that, there are those people who try and try and try to have ‘just one’ girl or ‘just one’ boy, to the point where they’re having 15, 16 kids. Do I think that’s irresponsible? Yeah, I have to say I do. Would I want them to use gender selection, well…that’s a pretty slippery slope too, because of course there’s no guarantee they would be happy with the result. And who’s to say that later on in life that child might not decide that Hey, I was totally born in the wrong body?

    Anyway, I think I’ve burnt out all my thinking on the topic, which has certainly been interesting. Thanks for bringing it up!

  16. Megalodon says:

    Out of the ambivalence, many are sounding moral objections against persons who may decide to use these actual and hypothetical technologies for bigoted, selfish, perfectionist, consumerist, and/or eugenic ends. Is this one of those “I find it odious, but they should still have the right…” situations? Or is this a serious argument for prohibition?

    Is anybody here arguing that these hypothetical uses should be restricted or prohibited by law to frustrate such ends? Should commercial geneticists be barred from modifying certain embryonic genetic features? Should physicians be prohibited from disclosing certain conditions to parents if disclosure of those conditions might incline them to abort? (China already prohibits obstetricians from disclosing the fetal sex to the parents discourage sex-specific abortion).

  17. Lizzy L says:

    Megalodon, I don’t believe anybody here is making the arguments you postulate in your last paragraph. In fact, I don’t think anybody here is even arguing. We are exploring issues. We are, in fact, thinking aloud, and I, for one, am not thinking about legal prohibitions or government regulations. I am thinking about the choices people make and why they make them.

  18. this scares the living hell out of me. what i think is ironic though is that people don’t mind choice when it comes to ELIMINATING disability but when disabled people want to have disabled children and use genetic science to do so, people freak out…

  19. Orodemniades says:

    MissCripChick, I have to admit I’m squicked out by disabled people wanting to have disabled children. Now, I’ve only heard of one case of this, a pair of deaf parents who wanted a deaf child (I have a vague recollection of them suing their doctor??), and yeah, I don’t think that’s fair to the child, because they’re choosing to limit their child’s interaction with the world.

    I am by no means saying that disabled people shouldn’t have children, or shouldn’t want their children to be able to relate on a one on one basis.. I am questioning what the purpose of deliberately making them disabled might be, to whose benefit?

    Of course, being a fan of science fiction, I can totally see a future where what we consider a disability today might be the best option in the future. Lois McMaster Bujold, in her Miles Vorkosigan series, has some interesting thoughts on this, particularly concerning the Quaddies…amongst others. However, even her characters speakj of discrimination and hatred and of feeling, sometimes, less than perfect.

    Gah, it’s all so complicated!

  20. Lynn Kendall says:

    Orodemniades, I think you nailed the whole issue when you said, “you never know how that child is going to turn out.” That’s *always* true. Having a baby is inviting a stranger into your marriage. A totally helpless, dependent stranger who doesn’t speak the language. It’s an awesome responsibility even before you get to any handicaps.

    And I think every decision needs to be made privately, based on the parents’ and families’ emotional, financial, and physical resources. Nobody from outside can decide what’s right.

  21. Debbie says:

    misscripchick and Orodemniades: the Best Book Ever on wanting disabled children is the brilliant Geek Love by Katherine Dunn. Some folks can’t read it at all, and I understand why; I, on the other hand, swallowed every word gasping for the next.

    If you’re struggling with this issue from either side, I recommend it highly.

  22. Orodemniades says:

    Oh yeah, I’ve heard of that book, maybe reviewed in Locus, but haven’t come across it yet. Judging from the Amazon it sounds like the type of book I like to read. Thanks for the rec!

  23. janet says:

    I’m coming in late here, but I have a few things to say because this is a subject that is very important to me. I had an abortion a few years ago because of a genetic condition in the fetus. The year or so following the abortion was the darkest time of my life so far, but I would make the same decision again in the same situation.

    At the time, my dad said to me “I think you did the right thing,” and I remember being shocked by the statement, because one of the few things I was sure of was that there was no “right” decision. I know there are people, including people I love and respect, who will never believe that what we did was morally acceptable, and I have no desire to try to change their minds about that. What I do insist is that people understand that the decision wasn’t easy, callous, or painless; what fills me with rage is when people talk about this as equivalent to “rejecting a child because it isn’t perfect” (news flash: no child is perfect) or aborting based on something as trivial as eye color. I cried bitterly every day, sometimes several times a day, for more than a year. I had fantasies of throwing myself in front of a BART train. I suffered. And yet, as I said above, in that situation I would make the same decision again.

    So, a response to a comment above:

    …what is the difference between choosing whether and when to give birth to and raise a baby, and choosing details of that baby’s biology?

    Surely there is an obvious difference: The first is making a decision about your own destiny; the latter is making a decision about someone else’s.

    When you’re pregnant, it’s virtually impossible to separate the two.
    Your destiny and the fetus’s are inextricably intertwined.

  24. Lynn Kendall says:

    Janet, I have no wisdom to share or words of comfort, really. I just want to acknowledge your pain and tell you I respect your choice.

    I share your rage at the assumption that deciding to have an abortion is trivial or easy. Even in a clear-cut case of serious genetic abnormality, it’s heartbreaking. In other cases, it’s just as difficult — or at least it has been for all the women I know who have made that choice.

  25. Lynn Kendall says:

    Hit send too fast.

    But painful as the choice is, we still need to have it available.

  26. Orodemniades says:

    Janet, thank you for sharing your story. I know a woman who had to terminate twins in order to save her own life. While she made the right decision (imo, as well as her doctors, family, and husband), not a few people felt the need to comment on the viability of her children – at 24w.

    Ultimately, besides her own life, she looked at the life they would have had, had they even survived, and decided that it wouldn’t be fair to them. Absolutely heartbreaking for all concerned, even those of us on the sidelines.

    As I said, abortion is heartbreaking at best, but sometimes the best option.

  27. Hi,

    Please consider visiting http://www.neoteny.org/?cat=7 and maybe http://www.neoteny.org/?p=132 for a unique unorthodox theory of the cause of autism and its relationship to female infanticide based on an evolutionary interpretation of social structure transformation from patrifocal to matrifocal societies.

    Thank you,

    Andrew

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