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Why Bother to Write About Prenatal Testing?

A continuation of my conversation with George Estreich:

George Estreich: In both your book and on your blog, I've been struck by your wish to take on difficult subjects relating to Down syndrome, prenatal diagnosis and abortion among them. A few questions:

–Can you talk about your motivation for discussing these subjects—why they matter to you, and what you hope to achieve?

Amy Julia: I sometimes wonder whether I should give up writing about prenatal testing and abortion in particular. I find that my most popular posts, whether on my personal blog or elsewhere, are ones that simply tell a story about our family life. I'm not writing for popularity's sake, but to the degree that page-views demonstrate influence, my "softer" posts have more influence than my argumentative ones. To that end, I think my most important calling as a blogger right now is to help people imagine the possibilities of full life for a family that includes a child with a disability, and opinion pieces about prenatal testing probably don't really serve this goal.

With that said, I am deeply troubled by the prevailing assumption within our culture that having a child with Down syndrome is a problem to be avoided. Having Penny in my life has introduced me to a richer, more vibrant, vulnerable, and beautiful world. I feel compelled to challenge the assumptions within the media and medical community because they are so often inaccurate and perpetuate a culture that idolizes intelligence and economic independence which leads to a sort of social impoverishment.

GE: Can you discuss some of the complications of linking public questions to a personal story? What are the potential rewards? And are there times when you deliberately separate your own story as a parent from the issues that story provokes?

AJ: Two complications come to mind. First, our story will never represent all stories of families with children with Down syndrome. Penny is her own person, and her abilities and challenges and appearance and behavior are particular to her. Second, there's the risk of hurting my children by telling too much of their story. I am wary of exploiting them, but I am also willing to take this risk because it makes such a positive difference in other people's lives. I do try to be careful about what stories I tell. I ask myself if I would tell that story in front of Penny, and if I wouldn't, it won't make it onto the blog.

I do think one of the major barriers for women in deciding to continue a pregnancy after a prenatal diagnosis of Down syndrome is that they can't imagine life with a child with Down syndrome. Seeing our family shouldn't suggest that other families will be the same, but it might suggest similar possibilities, at least when it comes to the potential for love and joy and friendship.

GE: Is there a particular audience you most want to reach?

AJ: I most want to reach women who are much like I was during my first pregnancy—ignorant of the ethical, spiritual, and emotional decisions that prenatal testing might provoke. So pregnant women (and their partners) were foremost in my mind when I wrote What Every Woman Needs to Know About Prenatal Testing.

GE: Both of us have written about new technologies, particularly the early, non-invasive pregnancy tests for trisomy. Are these tests neutral, as some contend—a less intrusive way for women to discover the presence of a chromosome, or even to prepare for a child with disabilities—or do they send an implicit message about disability and health?

AJ: I've recently received three different emails from PR reps from various companies producing these tests. In each case, they are hoping I will review their product as a positive aid to pregnancy because the tests will reduce the need for amniocentesis and thus reduce the risk of miscarriage. I'm bewildered by the fact that they are appealing to me as an advocate since I have written critically about the tests in the past, but a part of me wants to call them out and suggest that they provide my book or other positive resources about family life with a child with a disability as a part of their promotional efforts.

All this is to say that while I cannot categorically condemn these tests because I do think they could be used for positive ends, from a historical perspective they emerged for the specific purpose of allowing women to terminate pregnancies with a prenatal diagnosis. Physicians and pregnant women prefer these diagnoses to come as early as possible because abortion is a less invasive and risky procedure the earlier it is performed. Although women use these tests for other means, if physicians didn't want to offer the option of abortion, they would not exist.

You've done a fabulous job demonstrating some of the problems in the marketing and publicity associated with these tests. I just hope that all of us who write about these things are able to raise public awareness of the concerns associated with them and not just the perceived social benefits.

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