Prenatal diagnosis and perceptions of bias

Data here on the unintended consequences of prenatal diagnosis, this from the journal Intellectual and Developmental Disabilities. Mothers of children with Down syndrome in Germany report a much greater feeling of being involuntarily segregated in society today, compared with data collected before the widespread acceptance and availability of prenatal chromosome analysis. The authors note this finding comes even as the prognosis for newborns with Down syndrome is better than ever before in terms of life expectancy, health care and psychosocial support.

“Accordingly, parents of children with Down syndrome may experience a somewhat paradoxical contrast in society between prenatal rejection and postnatal acceptance of their child.”

More quotes:

“…. In a recent survey in Germany of parents with children who have Down syndrome, 26% reported that they had been confronted with accusations that the birth of their child could have been ‘‘avoided’’. This rate was as high as 40.5% among those parents who had received the diagnosis of their child’s disability prenatally. This observation supports the widely discussed assumption that the availability of prenatal diagnosis puts affected families under social pressure by undermining the acceptance of their child with disabilities. “

The authors conclude that mothers experience feelings of greater personal stability and self-confidence than they did 30 years ago, presumably aided by parents’ self support groups, but that they also increasingly feel that their children are being discriminated against.

“... mothers of children with Down syndrome, which the general public widely recognizes as the most prominent example of a prenatally diagnosed genetic disorder, tend to experience the availability of prenatal diagnosis as an emotional burden. Nonetheless, mothers wishing that their child would not live anymore remain rare exceptions. The improved medical care and psychosocial support for children with Down syndrome and their families seems at least to outweigh the emotional stress caused by the option of prenatal diagnosis.”

The report appears in Volume 45, number 2: 98-102. The journal is published by the American Association on Intellectual and Developmental Disabilities. Lead authors: Wolfgang Lenhard, PhD, Erwin Breitenbach, PhD, and Harald Ebert, PhD, institute of Special Education, Wuerzburg University, Wuerzburg, Germany.