Reviews | Our prenatal testing system is down

The American College of Obstetricians and Gynecologists also recommends that physicians provide respectful and neutral advice when discussing options for continuing or terminating a pregnancy to every woman with a prenatal diagnosis of a genetic disorder or abnormality. major structure. According to the National Disability Councily, 86 percent of medical providers mentioned termination of pregnancy after prenatal diagnosis, while only 37% mentioned continuing the pregnancy. In addition, genetic counselors and physicians who offer information overwhelmingly discuss biomedical concerns without describing the social supports available to families, or the self-reported happiness of most people with Down syndrome.

In 2008, Congress unanimously passed the Prenatal and Postnatal Diagnosed Conditions Awareness Act, intended to ensure that women receive accurate and up-to-date information about Down syndrome. But Congress never appropriated the funds necessary to put this law into action. Such funding could be used to provide balanced information about children with chromosomal diseases to health care providers, train health workers to deliver prenatal diagnoses, and establish a telephone helpline and other methods of support for children. women who receive prenatal diagnosis.

The medical establishment assumes that women want the option of abortion in the face of a positive test result. In fact, 56% of Americans interviewed by Gallup in 2018 support women’s right to choose abortion in the first trimester when the child would be born with a mental disability, compared to 29% who said abortion should be legal in all circumstances. And while population-based studies have not been conducted to provide reliable data on the effect of these new prenatal tests on pregnancy termination rates, a full review studies published from 1995 to 2011 suggest that 67% of American women who were diagnosed with Down syndrome during prenatal testing had an abortion.

I understand the fear that many women feel about a prenatal diagnosis. I wish more of them would know that countless families with children with Down syndrome have lives marked by love and joy, lives that have been changed for the better. While I view every abortion as a tragic loss of life, I am especially saddened for families who have chosen abortion because they feel scared or alone about raising a disabled child.

These decisions seem to be individual, yet every decision whether or not to bring a disabled child into our world is made in a social context. Women who choose to continue or terminate a pregnancy after receiving prenatal diagnosis are not just making personal decisions. They make decisions that reflect their community and social reality. These decisions both create and advance a less diverse world, a world less attached to the limits and vulnerabilities that invite us into relationships of mutual care and concern for one another.

If having a disabled child is viewed solely as an individual choice rather than a way of being socially supported and valued, we can imagine a future in which government support may be denied to women and families who “choose” to bring of children with Down syndrome or other genetic conditions around the world.

Penny’s relatively ordinary life is largely due to our own social circumstances. We live in a city with adequate funding for special education. Penny received several therapies each week in her early years. She was also expected and able to contribute to the life of her community. These contributions are as ordinary as his mornings: a word of encouragement. An inability to hold grudges. A love for nachos and Olivia Rodrigo and the color orange.

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