You have got to be kidding me.

The rate of false positives for any disorder outweighs the true positives by a vast amount. Unless, of course, you are talking only about the definitive tests (i.e. amnio) and not the screenings. It is, of course, the screenings that most women are subjected to, and I know several mothers of my own acquaintance who were screened positively for conditions their children do not have.

And why aren't we aware of them? Could it be because, say, there aren't as many scientists interested in unlocking the secrets of something they see as "normal" vs. something they see as "abnormal"?

Height, too, is determined by several interacting genes as well as environmental factors. But these subtle nuances did not keep my little girl out of the medical merry-go-round. The fact is--whether you want to hear it or not--that her size was considered a "problem" that should affect my future reproductive choices. The fact that she was healthy, bright, happy, loveable and loving was all secondary to her height; whereas someone with children who are vicious, violent and mean (but a normal size) would not be sent off for specialized medical testing or subjected to well-meaning speeches about "what can be done" for "next time" if you "decide you want to try again," and "what your options are."

It has been made crystal-clear to me that should I decide to be pregnant again, I will be followed closely to monitor the baby's size. Why? To what end? They can't treat it or prevent it, there are no associated health problems, and gods know Frances is a wonderful child who any parent would be lucky to have. The only possible outcome of such "testing" and following would be to offer me the choice of an abortion should another fetus be similarly "affected." And solely on the basis of size.

Right. So when Frances's first doctor told me that she should see genetics because her "eyes were too big" (and you know, she took a genetics course in medical school!) and she was too small so there had to be something "wrong," though her health was perfect, and when the second doctor (who at least wasn't pushing formula on us to "fix" her size) said he would only take her on as a patient if we took her in to genetics, and when there were no other pediatricians who would take on new patients without a referral (that I couldn't get) or unless they were newborns--what would you call it?

I suppose I had the option to not have any doctor for her at all.

Noooo.... Because if they call you up on the phone and speak in a pained, hushed voice about "the doctor wanting to make an appointment this week," it won't make a pregnant woman panic. Or if they sit you down at your regular prenatal appointment and say something about echogenic bowels or elevated estrogen levels, you can just plug your ears and pretend you didn't hear them.

Nope. Only "encouraged." Only to have it offered--sometimes multiple times.

First of all, you are assuming that genetic counselors themselves are somehow free of the biases that permeate the rest of society, and won't allow those biases to influence the options they present to their clients, the testing they recommend, their tone in imparting diagnoses, and so on--in short, you are assuming that genetics counselors (and other medical professionals) are not human. Of course, they are, and any mother of a very small child can tell you that which doctor your child sees will have a tremendous impact on whether or not their size is viewed as a "problem" and what, if anything, you should do about it. They could also tell you that women of their acquaintance with very large children are normally not reffered to genetics because doctors tend not to see it as pathological, despite the existence of Marfan syndrome (which, yes, I am aware of).

Secondly, you are ignoring the entire system of genetics counseling. The point is not that individual genetics counselors are intent on wiping out certain traits. The point is that the whole system is based on what human traits are normal or desirable, and which are not, and that this is seldom based on what is medically treatable.

How, besides eugenics, do you explain the substantial literature measuring the success of T21 prenatal screening by the number of such pregnancies terminated? These are not scientists intent on learning the diagnosis so that they can treat the babies before they die--they are scientists intent on eliminating T21 as a human characteristic. Their papers are full of cost-benefit analyses based on the savings of not having to treat T21 because of the terminated pregnancies. That's not eugenics to you?

How do you explain why my baby girl was referred to genetics in the first place? There wasn't a single doctor, not one, who ever believed she was or would ever be sick. There was not a single doctor, not one, who ever believed she did or would ever need treatment of any kind, or indeed that there was any treatment in existence that could benefit her. The entire experience had no impact on her medical care whatsoever. The only reason we were referred was because one doctor thought her eyes looked funny, and another doctor thought she was awfully small; the only result we have from the entire thing is a resounding agreement that she is tiny, but healthy (something everybody already knew), and that our chances for recurrence in a future pregnancy range up to 25% (though no one precisely knows becuase no one knows why she is small). In short, the only possible result of this is to make Erik and I feel that our genes are somehow substandard and we are being awfully cavalier if we decide to inflict shortness on another child.

I think you need to be prepared that the people who see you may have a very different view of your services than you do.

How do you explain the women with prenatally diagnosed T21 fetuses who were repeatedly offered abortions? "Do you want to terminate? Are you sure? Are you really sure? Is it because someone else won't let you? Do you know how hard this is going to be? The baby could be sick! The baby could be dependant on you for life! Read this brochure. Are you sure you don't want to terminate?" Over and over for the whole pregnancy. Is that neutrally presenting information and respecting a mother's choice?

NO.

Believe it or not, after two years of experience with genetics counseling and testing, I am aware of the stated purpose of the project. It certainly does not reflect my experience, or the experience of most of the women I know.

I frankly don't care whether you "buy" that it's eugenics or not. But if you are so unreceptive to the stories of the populations you are purportedly interested in treating, I shudder to think of the experiences of your eventual patients. I have seen four geneticists, three pediatricians, a skeletal dysplasias expert and a craniofacial team; Frances has had chromosomal testing, genetics blood tests and bone scans; I have several women of my acquaintance who have been through prenatal genetics screenings of various kinds; and I know several women whose children are affected with different kinds of syndromes; and I know one other woman whose small baby girl was referred to genetics also solely on the basis of her small size in the absence of any signs of illness or trouble. You might want to sit up and pay attention to their stories, including the stories of their experiences with genetic testing pre- and post-natally, because if this is what you want to do with your life this is the population you are going to serve. And if they are experiencing this as a eugenicist project, then that might tell you something valuable and important that you can use in your practice.

That is, if you aren't too busy being defensive to hear it.