CBS reports that Iceland is a country where "Down Syndrome is disappearing."
Since prenatal screening tests were introduced in the early 2000s, close to 100 percent of couples who received a positive test for Down syndrome decided to abort. Those who support prenatal testing and abortion rights will argue that this is simply a matter of giving couples the information they need to make informed parenting choices.
But does the testing process and the response of medical professionals to poor prenatal diagnosis play a role in the overwhelming majority of parents deciding to abort their children with Down syndrome in Iceland and other western nations?
Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University in Iceland says, "We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you towards a certain direction."
At Iceland's University Hospital, Helga Sol Olafsdottir counsels women who have a pregnancy with a chromosomal abnormality. Olafsdottir's advice to those parents wrestling with the abortion decision and feelings of guilt: "This is your life — you have the right to choose how your life will look like."
A parent was asked if there was pressure to abort in the screening process: "It was not pressure, but they told me that most women did it," she said. "It did affect me maybe a little bit."
Couples are vulnerable in the aftermath of receiving a poor prenatal diagnosis. Counselors don't even have to pressure these couples to abort when the whole process moves parents inexorably in the direction of termination.
Couples usually only receive non-directive counseling after poor prenatal diagnosis, such as that offered by Olafsdottir. While it is thought to be an objective process that totally respects the parent's choice, it is actually quite influential in the decision to abort. For example, Olafsdottir counsels anxious couples to focus primarily on "their lives and choices," not their babies' lives.
Typically, this nondirective counseling focuses exclusively on the various challenges of the condition without offering a more positive perspective on raising children with a disability. Counselors can fail to connect parents with other families who are successfully parenting their disabled child and organizations that advocate for and support families with Down syndrome children.
Even with more severe prenatal diagnosis, the type of counseling parents receive is a key factor in their decision to parent or abort.
In one study of a more serious fetal disability that often results in death shortly after birth, 80 percent of parents who received "non directive" counseling chose to abort.
About 80 percent of parents facing the same diagnosis, who were provided with the option of perinatal hospice care for the child and family, chose to carry their disabled child to term.
Those who advocate for routine screening to detect fetal disabilities also fail to advise parents of the potential for serious post-abortion reactions. The fallout from this loss can place a tremendous strain on couples as they struggle with the shock and pain that can follow the abortion.
Some abortion advocates may concede that some women suffer symptoms of depression and grief immediately after termination of disabled babies, but they see this as a short-term condition.
Research, however, confirms that women often suffer symptoms of emotional trauma and complicated grief years after such procedures. Research revealed:
Women 2-7 years after were expected to show a significantly lower degree of traumatic experience and grief than women 14 days after termination…Contrary to hypothesis, however, the results showed no significant inter-group differences. (Journal of Psychosocial Obstetrics & Gynacology.V26: #1 9-14)
Some parents in Iceland are asking important questions about how routine screening and abortion of children with disabilities will impact their society. When the womb is the most dangerous place for a disabled child, will Iceland be a welcoming society in the future for children who are allowed to be born with disabilities like Down syndrome? Will their very presence trigger negative emotional reactions for the majority of parents who chose to abort their child with Down?
Thordis Ingadottir took the screening test after conceiving her fourth child at age 40. The results suggested a very small chance of the child having the disorder. As she learned when her daughter Agusta was born with Down syndrome, the screening test is only 85 percent accurate.
As is often the case, once these parents were provided the opportunity to get to know and love their disabled daughter, they grew to cherish Agusta and the unique gift of her life.
Agusta's mom is now an activist for the rights of people with Down syndrome."
"I will hope that [our daughter] will be fully integrated on her own terms in this society," she said. "That's my dream … Isn't that the basic needs of life? What kind of society do you want to live in?"
Kevin Burke is a pastoral associate with Priests for Life, a licensed social worker, and co-founder of Rachel's Vineyard Ministries.
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