Last Halloween a sting operation by Operation Rescue reported that a New Mexico clinic would perform an abortion on a 30-week old fetus, and, because the fetus had Down syndrome, state Medicaid would pay $16,000 for the procedure. In the wake of this atrocious news, the national Down syndrome organizations were criticized for failing to be overtly pro-life. While understandable, the reality is that being pro-life simply is not enough to stop the abortion of children with Down syndrome.

In December, Monica Rafie and Tracy Winsor, the founding partners of Be Not Afraid Ministry, wrote a compelling column asking, “How can we stop more Down syndrome babies from being aborted?” Their column was motivated by the introduction of new prenatal testing based solely on a sample of the mother’s blood. It is expected that more women will accept the testing, and, given the current practice, most will then terminate following a positive result.

Rafie and Winsor identified the availability of abortion as the problem that should be addressed head-on by the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). Furthermore, they criticized the NDSS and the NDSC for assuring the medical community during a consensus meeting that they were not pro-life organizations. Advocating that a fetus has as much of a right to life as any of us, and that Roe v. Wade should be overturned, however, isn’t enough. While pro-life advocates and organizations are doing the important work of challenging the legal right to abortion, Down syndrome support organizations’ focus should be on serving the concerns expressed by expectant mothers.

Even if abortion were banned, that would not stop the abortion of fetuses that test positive for Down syndrome. In Ireland and Uruguay, where abortion is outlawed, half of all pregnancies diagnosed as positive for Down syndrome are still terminated. Though abortion is banned, transportation is not, and so Dublin mothers simply cross the Irish Sea to England; those in Uruguay can travel to neighboring countries where they can abort.

Similarly, in America, even if the pro-life agenda succeeded, the challenge would remain one of transportation. Should the Supreme Court overturn Roe v. Wade, then abortion would be regulated by the individual states. There already exist “springing” statutes in several states that would automatically allow abortion to continue. In some, such as Maryland, abortion would be unrestricted for the duration of the pregnancy in cases of “genetic conditions” such as Down syndrome. So, like in Ireland, mothers in pro-life states simply would need to travel to Illinois, or California, or New York, or any of the many other states where they could selectively abort their pregnancy because their child was prenatally diagnosed with Down syndrome.

Rafie and Winsor call on NDSS and NDSC to advocate for the unborn. Many pro-life advocates are doing just that, but this call overlooks the troubling reported experience of mothers who have aborted their children because of a prenatal diagnosis for Down syndrome. While these sorts of studies are few and far between, their results reveal a disturbing cognitive dissonance.

Mothers who have terminated following a prenatal diagnosis overwhelmingly (97 percent) report that these are wanted pregnancies. Furthermore, they say that they consider themselves to be, in fact, mothers, and that their fetus is not simply a fetus, but their child. Yet they still go through with aborting their child.

The challenge is not convincing mothers that their child prenatally diagnosed with Down syndrome is in fact a child, having moral status, and therefore having the same right to life as any other human being. Consider why these mothers say they aborted: the burden on their other children; the burden on the child itself; fear that they could not care for the child; and fear that society would not support their child. One study found that “the lack of access to care was often given priority over strongly held ethical positions, such as those on abortion.”

I have written previously on the research that offsets these fears: that siblings report considering themselves better people because of their brother or sister with Down syndrome, and that 99 percent of individuals with Down syndrome report that they are happy with their lives. In order for this much-needed balancing information to be shared, however, NDSS and NDSC must assure the medical community that they are not pro-life organizations. They must do so because, otherwise, such information is viewed skeptically as being a pretext for a pro-life agenda. This skepticism can further result in practitioners not referring their patients to responsible, caring parent support organizations where mothers report finding the most accurate information about Down syndrome, because their physician is concerned that instead, their patients will be browbeaten with a pro-life message during a very emotional and difficult time.

Therefore, while pro-life organizations advocate for social change in recognizing that fetuses also have a right to life, a different social change is needed to address expectant mothers’ concerns who are considering aborting their unborn children with Down syndrome. As the national advocacy organizations, NDSS and NDSC should be at the forefront in challenging public policy to effect this change. Instead of investing $16,000 of scarce public healthcare dollars to pay for aborting children with Down syndrome, why not invest those funds in early intervention therapies to enable them to be more self-sufficient? Instead of California investing millions since the 1980s in prenatal testing for Down syndrome, why was that money not used to provide better support resources for individuals with Down syndrome? And, instead of the federal government investing over $15 million in the development of new prenatal tests for Down syndrome and now requiring prenatal testing at no cost through the recent HHS regulations on preventive care services, why is there not a corresponding investment to fully fund the Prenatally and Postnatally Diagnosed Conditions Awareness Act to provide accurate information and support services to expectant parents?

Rafie and Winsor acknowledge that NDSS and NDSC have called for social supports and inclusion of individuals with Down syndrome. But they overstate the efforts of the two national organizations to ensure that expectant mothers receiving a prenatal diagnosis get accurate information and the support they need. Neither NDSS nor NDSC has a single staff member whose sole responsibility is to address the existential threat to their organizations posed by the current administration of prenatal testing. A plan still is needed to address the challenges posed by the advances of prenatal testing.

Rafie and Winsor are quite right to call on NDSS and NDSC to take a public stand condemning selective abortion for Down syndrome. Doing so, however, is an anti-discrimination position, not an exclusively pro-life position. Rafie and Winsor’s larger argument, however, criticizing NDSS and NDSC for not being overtly pro-life or advocating the cause of the unborn ignores the actual difficult experience of expectant mothers. Rather than force these mothers simply to travel to abort their children, social change is needed so that these mothers can be confident that they will deliver their children into a society that welcomes them with the support that they need. Leadership is needed to effect change in the medical community to provide balancing information, and in society to support these families. Concerned parents and advocates look to the national advocacy organizations to effect this change in society’s view and support of those with Down syndrome.

Mark W. Leach is an attorney from Louisville, Kentucky, and a master of arts in bioethics candidate.

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