A study recently published in the Journal of Disability and Health shows that despite decades of positive societal progress for people with Down syndrome, the majority of doctors have a negative bias when informing parents of this prenatal diagnosis.
The study surveyed parents of children with Down syndrome about their experience of prenatal testing. Most said that the diagnosis was presented in a negative light, with an “I’m sorry,” and little information given about the condition. The study found that often medical providers have “an implicit bias when [making assumptions about] life with a disability like Down syndrome.” This could be a contributing factor to the high rate of abortion chosen by parents who receiving a diagnosis of Down syndrome during prenatal testing.
Amy Julia Becker, a well known Christian author, wrote about this study and her own experience of having a child with Down Syndrome in an article for Time Magazine. Becker and her husband found out their daughter Penny had Down syndrome when she was born, not as a result of prenatal testing.
She recounts how the doctor told her husband: “I’m sorry,” the doctor said. “Your baby has the features of Down syndrome.” They were sent home with little information on what this meant and Penny’s prognosis.
Other parents have reported similar experiences, such as Mark Cronin, father of John Cronin. They were also given the “bad news” of a Down syndrome diagnosis when he was born — and no other information.
Becker’s daughter Penny is now 18 and thriving, but unfortunately little has changed since her birth in the way of how doctors approach a Down syndrome diagnosis. This is similar to the experiences of parents who receive this diagnosis prenatally as well. Often the focus is simply on all the medical conditions and negative outcomes that can potentially come with Down syndrome. However, most families who have a child with Down syndrome will say what a blessing it has been. Besides this, medical advances have increased the life expectancy for people with Down syndrome, and most lead normal lives.
There are efforts being made to change this negative attitude towards disability and teach doctors how to present an unbiased diagnosis. Becker’s family participated in a program where they had medical students over for dinner so they could see what life was actually like for a child with Down syndrome. They realized it was not a death sentence.
Becker also references Lettercase, a project to produce information about different genetic conditions. The pamphlet for Down syndrome includes positive statements like: “While people with Down syndrome do face challenges, recent advances in healthcare, education, and public attitudes have greatly improved their lives.”
Becker has written many times against abortion and her concern that so many parents who receive a prenatal diagnosis choose to abort. In this recent article she points out that: “the study found that while the majority of doctors offered the options, far fewer provided… vulnerable women important information in the face of what is often an intense and relatively urgent decision.”
When Down syndrome is presented as a terrible condition which will only lead to lifelong suffering, it is not surprising that many choose abortion in a rushed decision.
