Prenatal Diagnosis and Selective Abortioncolon; A Challenge to Practice and Policy

摘要

Although modern tests of prenatal status are widely accepted by clinicians, public health professionals, bioethicists, and the general public, there is enduring concern that not all women welcome the prospect of making decisions based on the test findings. There also is some feeling that the technology itself is based on mistaken assumptions about the adverse influence of disability on quality of life. Terms such as ldquo;health,rdquo; ldquo;normality,rdquo; and ldquo;disabilityrdquo; remain indistinctly defined. It is not necessarily the case that chronic illness or disability permanently disrupts life or that disabled persons always experience isolation and powerlessness and are subject to poverty, unemployment, or low social status. These are vital issues in view of the fact than an estimated 54 million persons in the United States have disabilities.The medical care establishment justifies prenatal diagnosis and selective abortion because of the costs of childhood disability to the child, the family, and society. Endorsing prenatal diagnosis on societal grounds is dangerous, however, because only a small fraction of disabilities are detectable prenatally at present and it is not likely that most disability ever will be detected and prevented. A more positive perspective is that life for disabled persons is worthwhile and that society is obliged to nurture the lives of all, whatever their natural endowment. This certainly applies to children whose disability does not entail early degeneration, intractable pain, and early death. The prospective parents must want the child enough and be sufficiently optimistic about its outlook to opt against abortion. At the same time, there is little question that families raising disabled children experience undue amounts of stress and disruption.Professionals must know much more about life with disability and be able to provide adequate information if they are to offer ethical and responsible clinical care. Educative efforts are needed for obstetricians, midwives, nurses, and genetics professionals if they are to counsel prospective parents of disabled children. Professionals and policy makers must convey that it is just as acceptable to live with a disability as to live without one.Am J Public Health 1999;89colon;1649ndash;1657