The Scary Side of Noninvasive Prenatal Testing

Will insurance companies someday help bring about a “Gattaca-like two-tiered society, in which parents with good access to health care produce flawless, carefully selected offspring and the rest of us spawn naturals”? Will our government one day require expectant mothers to undergo genetic testing on their fetuses? Will debates over prenatal genetic testing ultimately affect women’s ability to get a legal abortion?

Mara Hvistendahl (the author of Unnatural Selection—a book about the consequences of a worldwide preference for male children) raises those questions in a Slate article that keeps popping up on friends’ Facebook feeds. Such questions may sound overblown, a bit dramatic, to readers who aren’t familiar with innovations in reproductive technology and their ethical implications. But they are great questions, and highly relevant. If anything, Hvistendahl’s article understates, rather than overstates, the potential dangers of evolving technologies, because she is writing exclusively about non-invasive prenatal diagnosis (NIPD) and not about other screening tools, such as preimplantation genetic diagnosis (PGD) and invasive tests, such as amniocentesis.

I worry about all of those scenarios that Hvistendahl raises, and more. I worry that cultural pressures combined with financial pressures from insurance companies will combine to make it nearly impossible for parents of children with special needs to get the community, educational, and medical support they need for their kids. Will we one day live in a culture where such parents are told, “Too bad. You could have used all of these tools available to expectant parents to ensure that you didn’t give birth to a disabled child. You chose not to use them. Therefore, your child’s needs are your problem, and only yours.”?

And I also worry that prenatal testing and reproductive technology is becoming another fruitless front in the battle between pro-life and pro-choice citizens. Hvistendahl raises this concern in her Slate article as well:

Anti-abortion activists are prepared for the new technology. Think Rick Santorum’s recent tirade about amniocentesis allowing us to “cull the ranks of the disabled” was overblown? It was just the beginning. A recent LifeNews.com article calls NIPD a “seek-and-destroy mission against any life in the womb.”

For instance, pro-life activists might seek to ban Medicaid coverage of NIPD along the lines of the Hyde Amendment prohibition on the use of Medicaid funds for abortion—a change that would disproportionately affect poor women.

As a writer who has focused on reproductive technology for a number of years, I’m not advocating that we accept and use all of this technology. Rather, I’m advocating that we talk about it. That we ponder such things as appropriate guidelines for the use of this technology, better patient and doctor education, and the rich lives that many people with genetic disorders lead. I want us to talk about this stuff. Nicely. Respectfully. But because I’m a Christian, and I’m not opposing the technology outright, some Christian pro-life folk have labeled me an enemy. This is a sorry, sad state of affairs, when being on the “right” side becomes more important than a willingness to enter into conversation with people with whom we might not always agree.

What is most needed in this vital cultural conversation is the very thing we Americans—at least as we are portrayed and quoted in the news media—are not very good at: Balanced and informed (rather than one-sided and inflamed) conversation.

I believe it’s possible to protect a woman’s right to terminate an unwanted pregnancy and also impose limits on what parents, doctors, and insurance companies can do with and in response to rapidly evolving reproductive technology. I believe it’s possible to honor and support the choices of parents who use technology to ensure the birth of healthy babies while also honoring (and supporting) families whose babies are born with genetic anomalies, ranging from mild to severe. I believe it’s possible for concerned citizens to talk and listen to each other with respect as we work to figure out what is good about this evolving technology and what is dangerous.

Where do we start? I think we start with conversation. I’ve been (yes, somewhat obnoxiously) posting comments on friends’ FB walls when they post a link to the Slate article, saying, “Read my book!” Yes, that’s self-serving of course. But one thing about Hvistendahl’s excellent Slate article was dead wrong. The subtitle of her article (and, having written for the web myself, I know that most likely Hvistendahl had absolutely no say in the titling of her piece) reads:

Noninvasive, early fetal tests for sex, paternity, and chromosomal conditions will change pregnancy dramatically—and raise tricky ethical questions.

That’s not right. Prenatal testing, along with other reproductive technology such as IVF, sperm and egg donation, and PGD, already have changed pregnancy dramatically, and will continue to do so. And the tricky ethical questions are not new; they’re just becoming more fraught, and more important, as the technology develops and becomes more available. I started writing my book on these very questions eight years ago. There were already plenty of tricky ethical questions to ponder in 2004. Now, in 2012, there may be new technologies, but the questions aren’t all that different. What duty do parents have to their prospective children, and to the wider culture, when it comes to those children’s health and genetic make-up? What makes a human life valuable? What pressures do parents face to produce “perfect,” healthy, successful children, and from where do those pressures come? What can physicians and other medical professionals do to help their patients make sense of the increasing number of childbearing choices available to them? Should we impose limits on the use of reproductive technologies? If so, what limits? Who decides?

If you are concerned, as I am, about those questions and what kind of society they might one day create, then read my book and/or some of the other excellent writing out there on the topic. (I will post a recommended reading list later this week.) And then start talking. Talk about it with your friends and doctors and in your church adult ed forums and your book groups and your moms’ groups. We can’t leave these issues to the insurance companies and medical ethicists and doctors to figure out. Even for those whose childbearing days are past, these issues have everything to do with us, our friends, our communities, our schools, our medical care, and the kind of society we want our children and grandchildren to live in.

 

 

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.

  • Tim

    Great questions, Ellen. It seems to me that societies repeatedly delve into reproductive engineering. Lately it’s been with the eugenics movement (e.g., involuntary sterilizations) and government enforced one-child policies (forced abortions and imprisonment). Insurance regulators allowing insurers to dump imperfect kids from coverage is not at all far-fetched.

    Tim

    P.S. Think Christian just posted my first article for them (Karen Swalloow Prior recommended me to them)! Hope you get a chance to check it out. It’s about the effect the sex trade has on an American family and on a village in India: http://thinkchristian.net/when-sex-sells-and-provides

  • Christine

    Ellen, I know for me the answer to the question: “What can physicians and other medical professionals do to help their patients make sense of the increasing number of childbearing choices available to them?” Came in the form of a doctor who did not press me when I told him I did not want any such testing even though I was considered to be of “advanced maternal age” when pregnant with my last child.

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

      Yes…I could not agree more. I’ll probably write more about this soon, but I’ve been thinking a lot about the docs on the other side of prenatal testing. I think they can get a bad rap, often unfairly. There are many excellent physicians, nurses, and others who perform their role beautifully, which includes not pressing parents to consider certain decisions.


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