Things to Ponder Before Undergoing Prenatal Testing

My friend, colleague, and fellow Patheos blogger Amy Julia Becker has a new e-book titled What Every Woman Needs to Know about Prenatal Testing: Insights from a Mom Who Has Been There. My official endorsement of the book, which I include below, was heartfelt and genuine. Amy Julia’s book is in a similar vein to my book No Easy Choice; both are partly memoirs and reflections from us as mothers who have dealt with complex reproductive decisions and having a child with a genetic condition. In both cases, we go beyond our own experience to discuss the issues, questions, and decisions resulting from increasingly sophisticated technology for learning about our children’s genome and potential health long before they are born. And in both cases, we don’t tell people what to do or what decisions to make. Amy Julia and I are both passionate about helping potential and expectant parents to consider the full spectrum of questions raised by reproductive technology, and then begin to formulate their own opinions and preferences based on their values, family history, and if applicable, religious faith.

As the proud mom of a daughter with Down syndrome, Amy Julia is honest about the problems she perceives in how prenatal testing information is often presented, and the gift that her daughter is. But this is not an attempt to tell people which choices they should make in their own pregnancies and for their own families.

My endorsement:

 “Today’s expectant parents can, through increasingly sophisticated and early prenatal tests, obtain much information about their babies-to-be. But paradoxically, they often lack information that would help them answer necessary questions around these tests, including whether to have them at all, how to interpret results, and what to do after receiving unexpected news. While clinicians can expertly explain the “how” and “what” of prenatal tests, parents often struggle alone with the “why” and “what next.” Into this confusing, emotional environment comes Amy Julia Becker’s excellent e-book on What Every Woman Needs to Know About Prenatal Testing. Becker’s core argument is that parents would do well to consider the complex questions raised by prenatal testing as early in pregnancy as possible (if not before). While she is up-front about her own leanings, informed by her experience as mother to a child with Down syndrome, Becker does not argue that particular decisions about testing are the “right” ones. Rather, she shares her own story, raises key questions, and encourages readers to seek additional counsel to answer those questions for themselves. Becker’s book is a reliable and accessible first stop for parents beginning the journey to parenthood in our technological age.”

– Ellen Painter Dollar, author of No Easy Choice: A Story of Parenthood, Disability, and Faith in an Age of Advanced Reproduction


What Every Woman Needs to Know About Prenatal Testing
 is available for $2.99 for Kindle download. Check it out. And pass this recommendation along to anyone you know who is pregnant or hopes to be so in the near future. Today’s technologies require more informed and thoughtful preparation on the part of expectant parents, and Amy Julia’s short, readable little book is a valuable resource for that preparation.

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://www.savingdowns.com Mike Sullivan

    “Today’s technologies require more informed and thoughtful preparation on the part of expectant parents”.

    Why? One could just accept one’s child as they are.

    If you want to really understand this issue and see through the PR and PC spins, then an analysis of the facts is helpful. Lets look at the facts of screening for Down syndrome in the UK.

    The following link is the formal birth and termination numbers for the UK in 2010 for pregnancies involving Down syndrome.

    Of the 1,099 pregnancies, there were 715 live births (38%), 1,099 terminations (59%) and 54 still births/miscarriages (3%).

    What is really interesting though, is the breakdown between prenatal and post natal diagnosis. For the live births, 91% were diagnosed after birth and 9% prenatal. Of those diagnosed prenatal a whopping 93% were terminated and only 5% went on to a live birth.

    This all indicates that the national screening programme in the UK is being used for the birth prevention of babies with Down syndrome, rather than birth preparation or life affirming care.

    Similiar figures are seen worldwide. It’s got nothing to do with the “informed and thoughtful preparation on the part of expectant parents”. It’s a means to stop a group of human beings being born because of the genetic differance, aka eugenics. That is how the technology is been used. The facts speak for themselves.

    http://www.wolfson.qmul.ac.uk/ndscr/reports/NDSCRreport10.pdf

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    “One could just accept one’s child as they are.” – Of course! However, one still has to make a proactive decision not to use the many screening options offered, or to use them for purposes other than termination (which many do….I did, and Amy Julia used some limited screening tests for her own reasons). What Amy Julia is arguing (and what I have argued) is that people need to consider the many practical, emotional, and ethical questions raised by modern reproductive technologies, including the ones that most concern you, preferably before they are sitting in a doctor’s office being asked if they want to have such and such a test. Because the decision you make to take that test or not, and the decisions around what to do with the info you will receive if you do, are not always easy. I’m guessing you would say they are easy, that it’s simple. Don’t have the tests. But it is not that simple for most people. It wasn’t that simple for Amy Julia (who grieves the stats on Down syndrome babies as much as you do), and she is generous and pragmatic enough to know that it’s not simple for most people. The technologies are here whether you like them or not, and require thoughtful evaluation by expectant parents to whom they are routinely offered. Even for people to do as you hope they would, and simply sit back and see what child they receive without any intervention or evaluation, requires a decision. The medical culture usually fails to provide adequate information and context to allow people to make that decision well. Amy Julia has stepped in to do to what they have failed to do.

  • truth speaker

    How is aborting, or to use the euphemism “terminating” any child consistent with the teachings of Jesus? The answer- it’s not; everything in the Bible and the teachings of Jesus speak against it. Humans don’t create life; they can partner with God in co-creating life, and they can choose – of their own free will, to do evil, go it alone and destroy that life.

    As Mother Theresa said, “Social Justice Begins with Protecting the Life in the Womb.”

    • Jeannie

      I didn’t see anything in the post above that would raise the question of whether terminating a child is consistent with the teachings of Jesus. I think the point of the post and of the books referred to is, as said, “helping potential and expectant parents to consider the full spectrum of questions raised by reproductive technology, and then begin to formulate their own opinions and preferences based on their values, family history, and if applicable, religious faith.” Sounds like in your case you would decide not to abort based on your Christian faith. That would also be my choice. But whatever decision one makes it’s always best to be informed. That’s really what I got out of the post.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Yup. You nailed it Jeannie. Thanks.

        And to go a step further, even if someone knows they would never choose to terminate a pregnancy, there are many other decisions they will be asked to make about whether to engage in prenatal testing of any kind, and to what extent. There are good and valid reasons to undergo such testing even if one won’t terminate, and good and valid reasons not to. Regardless, a decision must be made. And so often, expectant parents are presented with the diagnostic test without having had any opportunity to think about whether they want it, and why.

        I chose to do amnios with two of my pregnancy purely for emotional and practical preparation. I’m so glad I did. I’m also so glad that I had done a lot of hard work around the questions that Amy Julia and I both raise in our writing, so that I could make that choice with confidence.

      • http://www.savingdowns.com Mike Sullivan

        Yes, it was hidden in the word “choice” and the context that the writer is a Christian. So the question arises as to what the Christian response would be to the use of such technology.

        As a social justice organisation, Saving Downs advocates that screening for Down syndrome must only be used for providing life affirming care for the unborn child (and to be clear we are a non-religious organisation). Whereas the author is open to the choice of using genetic screening that would provide information leading to another choice that she is open to, an abortion based on a genetic difference such as Down syndrome. Whether that is an appropriate Christian response to Down syndrome and genetic screening, or indeed disability in general, is for Christians to resolve, but as advocates for people with Down syndrome we know discrimination when we see it and are clear on where we stand.

  • http://www.savingdowns.com Mike Sullivan

    I understand and respect that some women want to undergo screening. The context of my comment is Down syndrome, because that is the main condition targeted in screening tests. It is reasonable, though, for women to be advised that a diagnostic test for a Down syndrome statistically has a higher risk of causing a miscarriage than any therapeutic benefit that relies on a diagnosis.

    As I pointed out, screening for Down syndrome is used almost exclusively as a birth prevention measure. So I think as a society we need to understand the consequences of that and what this means as a society that does or does not value all human life.


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