Prenatal Testing and Disability Rights

Reviewed by Ruth

Eric Parens and Adrienne Asch, eds., Prenatal Testing and Disability Rights (Washington, D.C.: Georgetown University Press, 2000).

As I sit down to review this important and wide-ranging collection of essays about prenatal testing of embryos and fetuses in the interest of predicting future disabilities, I am struck by the parallel between its theme and the fact that I look out on a city, barely covered with snow, that has come to a standstill because the weather service forecast a blizzard. Schools have been cancelled, air services suspended, friends and relatives are calling from far away, all because of multicolored television maps of what may befall us. And, all the while I remember our life before the weather service's current sophistication, when we lived with the weather and not in anticipation of it.

It jibes well with the question running through this book, what our increasingly urgent quest to predict future disabilities of our, as yet, unborn or, indeed, unconceived children has to tell us about our attitudes to disabilities and to the people who manifest them. It also raises the question whether we, as individuals or as a society, are better off being able to make those kinds of sophisticated, yet necessarily uncertain, prognostications than we were when we lived with the realities as we encountered them.

"Disability" is such an odd concept because it casts such a wide net. Realistically speaking, all of us are disabled in one way or another, if not visibly at birth, then perhaps subtly from birth on, or later in life through acute illness, accident, or some slower chronic process. And yet, perhaps precisely because we know this at some level, for most people in this culture, the idea of disability inspires dread. And, we project this dread, in one form or another, onto the people whose evident difference from what we accept as the norm requires us to confront it. And yet, is that really all that motivates prenatal testing? Are tests a reflection on people who live with disabilities or do they not reflect our hopes and dreams for ourselves?

Prenatal Testing and Disability Rights is the outcome of a two-year project by the Hastings Center, a distinguished bioethics think tank. The editors tell us in their Introduction that its intent was "to explore the disability rights critique of prenatal testing for genetic disability." The book does that and much more. Giving us voices from the disability rights community and their allies and critics, it cannot help but force readers to explore our own thoughts and positions on the current practices in prenatal diagnosis and on the arguments being offered pro and con. It is important to note, as the editors do at the outset, that all the thinking in this book is grounded in an "ardently pro-choice" perspective, so that this disability rights critique is concerned specifically with the way prenatal testing, and abortion as its possible outcome, reflect an interest in the implications for people with disabilities, and not for embryos or fetuses as such.

The collection comes in four parts. The first discusses prenatal diagnosis and the disability rights critique. The second offers various perspectives on the implications of prenatal testing and selective abortion for the anticipation and experience of parenthood. Here, as well as in the third section, we meet important personal accounts, exploring the implications and realities, for family life, of having a child with a disability.  These chapters also explore in depth the question to what extent it is fair to argue that testing in itself expresses negative views about people who live with the traits for which embryos or fetuses are being tested. The five essays in part four address practical questions for policy makers, courts, and the professionals directly involved with testing, and reflect on how the disability rights critique could, and should, affect the delivery of services to prospective or actual parents and their children.

Though prenatal testing is nominally intended to enhance "reproductive choice," it goes hand in hand with the aim of reducing the incidence of the conditions being tested for. Indeed, the history of eugenics has been one of geneticists taking it for granted that the information they provide will reduce the birth of disabled children. And, as the editors point out, even though "prospective parents will use positive prenatal test results primarily as the basis of a decision to abort," prenatal testing is nonetheless looked on simply as part of "good prenatal care." Diane Paul and Hamish Spencer, in an article on the history of eugenics, have recently pointed out that the geneticists who supported U.S. eugenic sterilization laws understood full well that sterilizing the relatively few people who actually manifest disabling inherited traits would not materially reduce the incidence of such disabilities in the population. But they favored the laws on the absolutist grounds that preventing the birth of even one disabled person was worth the implicit sacrifice of reproductive autonomy. And this attitude is with us still, especially as regards mental or intellectual "defects" and hence relative to Down syndrome, the condition that continues to be the one most diligently sought out and "prevented" by means of abortion. (Books like Michael Bérubé's Life as We Know It about his son Jamie, who has Down syndrome, are not appreciably changing the situation.)

One of the main problems, as I see it, is that all medical tests, but especially prenatal ones, reify real experiences, which usually have both good and bad sides. The long duration of a human pregnancy, when unimpeded by excessive medicalization, offers a woman and her family the opportunity to let their imaginations roam as they come to accept the fact that a new person is about to join their family for ever after. The less concrete the "information" they have about that future family member, the less their hopes and fears are channeled by "answers" that do not really tell them who that child will be and how its presence will affect their lives.

That said, I cannot agree with the argument of some disability rights activists, that the decision to test reflects a prejudice against people who manifest that condition. The reason is that I do not think the decision to have or not have a child, as also the current "choice" of what kind of child not to have, is about that child at all; rather, it is about how one imagines one's own life from that moment onward. And, just as the decision to abort any pregnancy does not reflect one's attitude toward people or family life in general, but only toward one's own prospects at that moment, so it is with the decision not to continue a pregnancy, predicted to end in the birth of a child with a disability one is not ready to countenance at that point. That does not mean that one thinks the disability is altogether too awful, much less that people who have it are not worthwhile people. What I find destructive and wrong about prenatal testing is not the implication of prejudice "because I don't think that implication inheres in the decision to test, though, of course, it may exist" but the fact that the specific test result reifies that future child as nothing but that characteristic. It is no longer a child whose existence our imagination can endow with all kinds of dreams and fears and hopes. From here on, the child is that trait tout court.

Bruce Jennings, in his essay, explores the constricting role of tests on parents' imagination, and Bonnie Steinbock also frames the issue in terms of parents' wishes for themselves, rather than of a reflection of their prejudices against people with disabilities. But, I want to raise a further point that suggests that the expanded use of procreative technologies, such as fertility drugs and in vitro fertilization, grows out of an excessive trust in the ability of technology to solve our problems, rather than the desire to avoid disabilities in one's future children.  Both techniques are greatly increasing the incidence of multiple births, with their attendant consequences of prematurity and low birth weight, both of which increase the likelihood of disabilities.   It is, therefore, not true that future parents are doing what they can to avoid disabilities. Rather, they are flocking to whatever new technologies are offered as long as they can afford to pay. That can mean disability prevention on one side and its promotion on the other. It is a mistake to look at only one part of this story. My guess is that both parts have more to do with professional domination and with the profitability of all forms of medical technology than with the promises (or threats) of the technologies themselves for the people who get drawn into them.

A brief review cannot do justice to the richness of this collection. The best I can hope to do is to intrigue you and pique your interest enough to make you get the book and read it in its entirety.

Ruth Hubbard
Harvard University