The latest research on life with Down syndrome paints a very positive picture. In a major feature in the American Journal of Medical Genetics, Dr Brian Skotko, of Children’s Hospital Boston, and colleagues report that “The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride”.
Of the 2,044 parents who were interviewed 79% felt their outlook on life was more positive because of them; only 5% felt embarrassed by them; and only 4% regretted having them. Similarly, nearly all siblings regarded their relationship with a brother or sister with Down syndrome as positive and enhancing. Of older siblings, 88% felt that the experience had made them better people.
Unfortunately, laments leading bioethicist Art Caplan, of the University of Pennsylvania, the message is not reaching doctors or parents. In an article in msnbc.com, he says, “This is clearly information that ought to get more play among doctors, genetic counselors, relatives and neighbors — all of whom often weigh in with nothing good at all to say about Down kids to prospective parents.”
Dr Skotko says that doctors need to be better educated about life with Down syndrome so that they can inform their patients. With a non-invasive test which will detect Down’s early in a pregnancy, it is likely that many women will choose to abort them. Already, studies show that about 90% of women do abort their child after a positive test result. He calls for a “gold-standard” packet of information for all expectant parents, guidelines on how best to deliver a prenatal diagnosis, a public awareness campaign, and quality training on how to deliver a diagnosis. American Journal of Medical Genetics, October