- Planning a trip to Italy, arriving in Holland:The delusion of choice in planning a family
The problematic of choice
The title of this paper deserves an explanation—or rather two explanations, one for the portion preceding the colon, the other for that following as the subtitle. The first part is derived from a short essay by Emily Perl Kingsley, written in 1987 in response to questions she had received about what it is like to raise a child with Down Syndrome.1 Kingsley suggests that planning for a child is like planning a trip to some wonderful destination—in her example, Italy. She asks us to imagine the anticipation: searching out guidebooks, learning important sites to visit, the excitement at being able to see things one has heard about an entire lifetime—seeing Michelangelo's David, for instance. But, when the plane lands, the stewardess announces, "Welcome to Holland." Surprise and disappointment—after all, this was about a trip to sunny Italy, not northern Europe. The baby has Down Syndrome. It is not the child you anticipated and dreamt of throughout your life. Once the shock and disappointment are overcome, writes Kingsley, you discover that Holland has tulips, windmills, and even Rembrandts. In fact, Holland turns out to be a lovely place to be, even though all your friends have gone to Italy and came back raving. But if you focus [End Page 9] not on how Holland is not Italy, but its own charming country, a trip to Holland becomes an unexpected but wonderful adventure. The story also illustrates the second part of the title—the many ways in which we delude ourselves, or just find ourselves mistaken, when we see ourselves making choices in planning the family we presume we desire.
Family choice offers feminist bioethics at once a cause for celebration and a cause for concern. Feminists have advocated choice in the decision to have a child by championing reproductive choice, including both the choice to have and not to have children. Demands for the rights of women to have access to contraception and abortion, as well as for freedom from coercive sterilization, have been steady items on the feminist agenda. Feminists have also fought for women's ability to control how many children to have, when to have them, and with whom. Bioethics has grappled with the proliferation of reproductive options, some of which have not only made it possible for women who are infertile to have children biologically related to themselves or their spouse, but also has provided options that have allowed lesbian and gay couples to have and raise children who are biologically related to them. Due to reproductive technologies such as in vitro fertilization, gestational surrogacy, egg and sperm donation, and a social climate more open to variations in family forms, we are witnessing families of choice that are liberatory for many. At the same time, bioethics has had to confront the more troubling issues raised by some of these and other innovations, such as the screening of fetuses for chromosomal anomalies and other "defects" for which the only "cure" is abortion.
Prenatal screening, as well as the screening for genetic traits of pre-implantation embryos, opens up serious questions about the desirability of selecting for or against certain traits. Many in the disability community have argued fiercely against the proliferation of practices that they contend are discriminatory against people with disabilities.2 The possibility of screening for diseases that manifest themselves in a person's later years might well reduce the incidence of some forms of morbidity, but at what cost to our acceptance of people with these diseases? And as we head down this road of selection against undesired traits, do we inevitably break down the resistance to eugenic measures, measures by which we also try to promote what some may take to be the desirable traits? The options, both as they become available and before they do so, clearly require careful evaluation one by one. That is not the task of the current paper. Here I want instead to throw the spotlight on choice itself.
The fact of choice itself is somewhat intoxicating and offers...