I thank Monica Rafie and Tracey Winsor for their response to my article “When Being Pro-Life Isn’t Enough.” They argue that national Down syndrome advocacy organizations should recognize unborn children with Down syndrome as members of their organizations and that these groups should “fight for” their unborn members. What measures should be fought for, however, is less discernible.
The few studies conducted of women who have terminated following a prenatal diagnosis reveal that these women consider themselves mothers and their fetuses with Down syndrome to be their children. Rafie and Winsor’s response does not explain how national groups’ fighting for these unborn children will overcome the reasons these mothers cite for why they still abort: the burden they think Down syndrome will be for these children and the lack of societal support for them.
Since the advent of prenatal testing, the medical establishment has recognized that balanced information and support are needed for its ethical administration. In the early 1990s, the National Institutes of Health sponsored a workshop on women and prenatal testing. Though it happened two decades ago, the very same issues I wrote about in the “Prenatal Testing Sham” were identified by the academic and medical leaders who attended that workshop.
In a statement the NIH workshop issued, they identified necessary steps for the ethical administration of prenatal testing, including:
1. Prenatal testing should not be used to pursue eugenic goals;
2. Prenatal testing should be meticulously voluntary;
4. Prenatal testing should emphasize genetics information, education and counseling rather than testing procedure alone; and,
6. Prenatal testing may further stigmatize individuals affected by a particular disorder or disability.
The medical community has known the standards that should be met for the administration of prenatal testing but has repeatedly failed to meet them. For this reason, national Down syndrome organizations should fight to hold medical organizations and the testing laboratories that develop and profit from prenatal testing accountable. At the same time, these organizations must rely on and partner with the medical community if expectant mothers are ever to receive information that addresses their reasons for aborting.
The two most influential sources of information on which expectant mothers say they rely in making their reproductive decisions following a prenatal diagnosis are: (1) their treating medical professional, and (2) educational materials, either provided to them or that they find on their own. The medical community, therefore, is effectively the gatekeeper for accurate information. For national and local Down syndrome groups to make it past the threshold of many doctors' offices, the medical profession must be assured that their patients’ myriad of perspectives in this pluralistic society will not be subjected to directive pro-life counseling. This very real barrier to partnering is evidenced by the consensus statement that Rafie and Winsor criticize in their original column. In order for medical organizations to work with the national Down syndrome groups, they first sought assurance that the Down syndrome organizations were not pro-life.
With all this said, one hopes this dialogue does not prevent passionate advocates for individuals with Down syndrome, born and unborn, from engaging with national and local Down syndrome organizations. Instead, it should serve as an impetus for concerned individuals to become engaged in the moral challenges posed by the current administration of prenatal testing. Such a dialogue should guide these passions and energies. Partnering is needed, not a hardening of opposing views between pro-life advocates and the medical community. This partnership can produce the information and resources that expectant mothers need when they are considering abortion following a prenatal diagnosis.
Mark W. Leach is an attorney from Louisville, Kentucky, pursuing a Master of Arts in Bioethics.