October is National Down Syndrome Awareness Month. Fittingly, the American Journal of Medical Genetics recently published groundbreaking research that challenges conventional wisdom about raising a child with Down syndrome (DS). Responding to these studies, noted bioethicist Art Caplan predicted that, nevertheless, they will not “make a bit of difference to parents deciding to end pregnancies once [DS] is discovered in the fetus.” Actual experience contradicts Caplan’s pessimism.
The new research reports the findings of three surveys in which thousands of parents and hundreds of siblings and individuals with DS themselves, were questioned about what it is like to be affected in one way or another by DS. Ninety-nine percent of parents said they loved their child with DS and 97 percent were proud of them; only 4 percent regretted having their child. While 4 percent of siblings would “trade their sibling” with DS, 96 percent indicated that they had affection toward their sibling with DS, with 94 percent of older siblings expressing feelings of pride. Finally, although 4 percent of individuals with DS expressed sadness about their lives, 99 percent said they were happy with their lives and 97 percent liked who they are.
Caplan believes that most mothers will still abort, even after this research has been released, simply because it is a fact that, currently, most mothers do abort following a prenatal diagnosis. This fact, however, does not support Caplan’s callous conclusion that “Down syndrome is almost universally seen as something to be avoided.”
The most recent studies find that there are more babies than ever being born with DS in the United States. Moreover, there are hundreds of families on waiting lists to adopt a child with DS. As for the high percentage of mothers who terminate, that does not support the conclusion that they are seeking to avoid DS.
Certainly some are, but study after study has found that up to half of all women accepting prenatal testing did so without making an informed decision, and that half did not expect they would have to decide whether to abort following a prenatal diagnosis. To his credit, Caplan recognizes that prenatal testing can result in uninformed and unexpected decisions to terminate, due to medical professionals and general society often having “nothing good at all to say” about DS. Indeed, one study has found that almost a quarter of physicians actively urge abortion, or emphasize the negatives about DS in order to encourage it. Even for those committed to non-directive counseling, a majority of physicians and genetic counselors have said that they would abort following a prenatal diagnosis for DS, which no doubt affects how a diagnosis is presented. Other recent studies also have found that a significant percentage of adults, youths, and physicians still hold outdated views about DS and would prefer that children with DS were segregated from, rather than included in, the community and typical classrooms. Therefore, those who choose to abort often are seeking to avoid an inaccurate, uninformed, and overly negative view of a life with DS, which is not supported by the current research.
Caplan laments that this “climate for having kids with Down syndrome, happy though they may be, is not good.” But Caplan’s own words contribute to maintaining this lamentable climate.
Caplan writes as though aborting a fetus somehow avoids Down syndrome. An abortion will prevent a child from being born, but it will not prevent that child from having DS; DS occurs at conception. Caplan ends his column by stating that “an abortion for medical reasons is a highly personal decision.” Yet, there is not a medical reason for aborting because of a prenatal diagnosis for DS. DS does not pose a risk to the health of the mother or the child. (Caplan refers to heart and stomach defects that some children with DS have, but these can now almost always be treated surgically.)
Nevertheless, the climate of ignorance about, and prejudice against, DS does exist, which is why this new research needs to be shared with the medical community and with expectant parents. While Caplan calls for this, he is simply wrong to assume that sharing this information will not make a difference. The most influential information an expectant mother receives is from her physician and from written resources. Physicians should be well-informed about DS and provide accurate written materials to their patients. Ignorance and prejudice persist, however: over 80 percent of medical students are not trained in working with individuals with intellectual disabilities, and almost 60 percent of medical school deans do not believe they should be. Further, while most physicians now offer prenatal testing to all expectant mothers, less than a third provide them with educational materials.
This pervasive, self-imposed ignorance in the administration of prenatal testing for DS is contrary to ethical medical practice because it denies expectant parents the information they need to make informed decisions. The same studies that identified the pervasiveness of outdated views about DS also found that those who knew someone with DS were more accepting of DS, and that was true as well of physicians who knew someone with DS, as compared to those physicians who had not known any. Despite their rising birth rate, those with DS remain an incredibly small minority population. This is precisely why providing information about these new studies is so important, for most expectant parents and their physicians will not otherwise have or understand the positive experience of getting to know a person with DS.
The further significance of the new research is that it addresses the concerns of mothers who have aborted following a prenatal diagnosis. These mothers were concerned that the condition would be an excessive burden on them and their other children, and that DS may be too much of a burden for the child him- or herself. The three new studies directly counter these concerns and more, as they reveal a truth not often considered: a child with DS will almost always be a positive force in the lives of his or her parents and siblings. The studies found that 79 percent of parents felt that their outlook on life was more positive because of their child with DS. For siblings, the response was even greater, with 88 percent feeling that they were better people because of their siblings with DS.
The most recent practice guidelines call for sharing positive stories about DS, and the new research provides physicians with those positive stories. These stories do indeed matter. Kathryn Lynard Soper is the author of Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, which is an approved resource by the National Society of Genetic Counselors’ practice guidelines. The introduction to the book’s sequel, Gifts 2, presents compelling evidence of how sharing positive stories can and will make a difference. Soper writes of co-hosting a new parents’ workshop at the National Down Syndrome Congress convention. A woman holding a baby started the Q&A time with the following comment: “This is Grace. I just wanted you to know that if I hadn’t read your book, my daughter wouldn’t have been born.”
Contrary to Caplan’s opinion, DS is not something almost universally sought to be avoided. Moreover, sharing accurate information about DS, the newest of which is overwhelmingly positive, can and will change expectant parents’ views following a prenatal diagnosis. This is in the best interest not only of those who are conceived with Down syndrome, but also of those who are blessed to know them.
Mark W. Leach, Esq., is an attorney in Louisville, Kentucky, where he is pursuing a Master of Arts in Bioethics. He is the founder and chair of the Informed Decision Making Task Force for Down Syndrome Affiliates in Action and was a contributor to Gifts 2. The views expressed are entirely his own.