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Disability in America: Toward a National Agenda for Prevention
about the content of the report with the sponsors. Regardless of how much was actually blind copied to the sponsors, one must ask why there was any blind copying at all during the course of this study. Is there any place for secrecy, for concealing communications between staff and sponsors, in a genuinely scientific deliberative process?
The topic of abortion is controversial, and was especially so during the period of this study, but it is nevertheless highly relevant to the report and to a prevention agenda. Genetic testing, prenatal diagnosis, and abortion of affected fetuses are already being widely used to prevent the birth of children with severe disabilities. Given the rapid pace of development of genetic technology, and the gap between our ability to detect serious diseases and to cure them, this trend will continue. As welcome as these techniques are to many parents and public health advocates, they are very objectionable to some in the disability rights community, as well as to people who oppose abortion on any grounds. Prenatal genetic testing, mass screening for genetic defects, and abortion of affected fetuses have been major topics of debate in both the scientific and popular press, and they will continue to be important topics in the 1990s.
These controversies should be acknowledged and discussed, not ignored, in an agenda for disability prevention. A genuinely deliberative and scientific research effort would have sought more information and discussion rather than suppressing the whole topic. In my draft, I documented extensively the connection between access to prenatal care, prenatal testing, and abortion on the one hand and reduction of disabilities on the other. But instead of building on this draft, the committee and the Institute of Medicine suppressed it. There are a few brief mentions of the topic, almost hidden in the report, in such phrases as "genetic screening and counseling and associated services," or "pregnancy termination." Yet there is not so much as a single full paragraph devoted to this topic, although recommendation 17 expresses the committee's "belief" that "prenatal diagnosis and associated services, including pregnancy termination" should be available to all women. Unfortunately, this recommendation, like so many others, is not supported by any analysis in the body of the report.
It is hard to say exactly why the topic of abortion was virtually omitted from the report. Many committee members were acutely uncomfortable with the extensive discussion of abortion. Some of them, as well as one of the sponsors (the National Council on Disability), were strongly opposed to the idea that prenatal testing and abortion might be used to prevent the birth of people with disabilities. Others were opposed to discussing abortion in this report because the topic is so controversial that it might deflect attention away from the rest of the report. One committee member strongly opposed use of the word "abortion" in the report and wanted the term "pregnancy termination" substituted instead. And of course the other sponsor, the CDC,