Prenatal Testing and Disability Rights centers on the tension between members of the disability-rights movement, who hold that prenatal testing for genetic disability sends a message that devalues people with disabilities, and those who view prenatal diagnosis simply as a way to avoid the distress of having a child with a serious disorder that need not increase discrimination against the disabled. The book is the product of a two-year project undertaken by the Hastings Center to explore the critique of prenatal testing for genetic disability put forth by members of the disability-rights movement. Over a two-year period, a group that included both members of the movement and nonmembers had a series of two-day research meetings, lively group discussions by e-mail, and a dialogue with other interested and knowledgeable people. The group included two ethicists, two genetic counselors, two pediatricians, one social scientist, one obstetrician, one epidemiologist, three educators, one writer, five philosophers, one lawyer, and two distinguished representatives of the disability-rights movement.
The book has four parts. Part one introduces the practice of prenatal diagnosis and the arguments that form the disability-rights critique. Part two presents several perspectives on the implications of prenatal testing and selective abortion for parents. Part three examines, from both angles, the contention that prenatal testing for disabling traits encourages negative views about people with such traits. Part four addresses practical questions about how policymakers, courts, and professionals should determine appropriate prenatal-testing practices.
The disability-rights critique claims that prenatal tests used to select against disabling traits express a hurtful attitude about, and send a hurtful message to, people who live with those traits. Members of the disability-rights movement say that such tests increase discrimination against the disabled by reinforcing the medical model that disability itself, rather than social discrimination, is the problem. Selective abortion may be based on the assumption that any child with a disability would necessarily be a burden to the family and society and would therefore be better off not being born. Parents who select against a fetus because of a predicted disability are making what is often a misinformed decision that a disabled child will not be what they seek -- a new being that will enrich their lives. The imagined reality of the future child with a disability is being distorted. In fact, recent research shows that aggregate patterns of adjustment and well-being are similar across groups of families with and without children with disabilities. Disabled people can participate in and contribute to society. Women or couples must be counseled and given access to good information about what disability is really like for children with disabilities and their families if they are to make truly informed decisions about prenatal diagnosis.
Critics of the critique argue that selective abortion should not, and does not necessarily, carry a message of devaluation. However, they point out that a disabling condition is not a neutral trait or variation. Disabilities impose real limitations, not all of which can be overcome through changing social institutions and attitudes. They are not something to be hoped for but, rather, are to be avoided if possible. Prenatal diagnosis enables prospective parents to prevent an outcome they reasonably want to avoid: the birth of a child who will be sick or will have a serious disability. Society can attempt both to prevent disability and to provide for the needs of those who are disabled.
The group could not reach a consensus on the question of whether there is a rational way to distinguish between tests that providers should routinely offer and those they should not. Dorothy Wertz submits that, in the case of pathologic traits, the arbiter of how serious the trait must be to justify abortion should be the mother. (I agree. The most appropriate criterion of severity is whether the mother is willing to undergo the distress entailed in aborting a wanted child.) Not everyone in the group was persuaded that it is no more demanding to raise a child with a disability than a child without one. There was irreconcilable disagreement on what having a disability is "really" like. Are so-called disabling traits neither disabling nor "disvaluable," but neutral? How much of the problem is socially constructed? A majority of the group seemed to think, albeit with some uneasiness, that disabling traits are "disvaluable" insofar as they constrain or limit opportunities. There was strong agreement that ignorance about the nature of disability is one of the primary sources of the discrimination suffered by people with disabilities; our society must be able to value people and lives of many different sorts.
The group wholeheartedly endorsed the central recommendation of the disability-rights community: to reform how prenatal genetic information is communicated to prospective parents. The argument for improved counseling for women undergoing genetic tests would be more persuasive if it had been emphasized that most counseling is done before amniocentesis for women of advanced maternal age, who have a relatively low risk of giving birth to infants with genetic disabilities. A minority of women receiving genetic counseling are those who are at relatively high risk because of their family history or because their fetus is predicted to have a serious disorder. It is this minority who need the intensive counseling recommended. Providing such counseling for the former group is not logistically feasible and might well do more harm than good by causing unjustified anxiety.
The writing in this book is clear, for the most part, as one would expect from such a group. Admirably, there is only a small amount of the "Chicken Little" type of speculation about what would happen if all genetically disabled children were "prevented," or if one could order "designer children" with specified "normal" traits enhanced. There are touching personal accounts. One is by a blind writer, who regards her blindness as a neutral characteristic but finds that her loved ones do not. Another is by a mother who has an adult daughter with severe cerebral palsy. She tells of both her grief and rage over her daughter's condition and her joy in being able to care for and love this beautiful, affectionate woman. In ironic contrast, a philosopher tells how, when contemplating sterilization after having three children, he worried about whether the three children would feel devalued.
The debate sways back and forth in succeeding chapters, and powerful arguments for and against prenatal diagnosis are presented eloquently. The book serves its purpose well -- to promote understanding of, and reduce discrimination against, those with disabilities, particularly as these issues relate to the prenatal diagnosis of genetic disabilities.
F. Clarke Fraser, M.D., Ph.D.
Copyright © 2001 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.
