In October 2008, Congress passed a bill called the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which came to be called simply the “Kennedy-Brownback Bill” after the two US senators who introduced it: Ted Kennedy from Massachusetts and Sam Brownback from Kansas. The stated purpose of the legislation was to require the federal government to make up-to-date, evidence-based information available about conditions that could be subject to prenatal or early postnatal diagnosis—conditions like Down syndrome and others.
Disability advocates Adrienne Asch and David Wasserman writing in a “Viewpoint” piece for the American Medical Association (AMA) saw the bill as a good first step in managing the delivery of a prenatal diagnosis. Pro-life advocates hailed it as a means of addressing a growing concern over the eugenic selection of babies with disabilities whose prenatal diagnosis would result in their abortion. Unfortunately, language in Kennedy-Brownback mandating compliance for healthcare providers was removed and the bill weakened. Various other disagreements about abortion and how it would be addressed resulted in the bill never being funded by Congress. When the bill floundered, pro-life advocates began working in their various states to accomplish what had failed in Washington, DC.
Within five years after the passage (and failure) of the Kennedy-Brownback Bill, disability advocates—and especially Down syndrome advocates—had introduced and passed similar legislation in nine states. As of January 2025, twenty-three states had passed legislation requiring parents receiving a prenatal diagnosis of a genetic condition (usually Down syndrome) to receive factual and current information on the disability, including positive outcomes experienced by many families who have welcomed children with the same condition into their homes.
The AMA “Viewpoint” piece written by Asch and Wasserman in 2009 noted that the information physicians provided at the time was “heavily biased, outdated, highly inaccurate, and almost always narrowly clinical.” They further noted that “women who want to test their fetuses prenatally should be able to do so, but they should only be offered testing as part of a process of exploring their goals and values for parenting and family.” Two years earlier, the American College of Obstetrics and Gynecology (ACOG) had revised its practice guidelines to recommend prenatal testing for all women, regardless of age or other factors that might put them at risk for having a child with a disability. Asch and Wasserman challenged this change with a reasonableness that superseded ACOG’s ideological perspective that clearly favored prenatal identification and abortion. A poll of ACOG member physicians in 1995 showed that 63 percent of respondents believed abortion was a justifiable treatment option for fetal anomalies compatible with life. 90 percent believed abortion was justifiable for uniformly fatal fetal anomalies! Clearly, support for abortion runs deep in the medical profession.
Without strong spiritual and familial support, parents may make a rash decision that causes profound guilt and leaves emotional scars difficult to heal.
Common sense would tell us that activists’ efforts to enshrine into law a requirement for women receiving a prenatal diagnosis to be given accurate, unbiased information would have had a positive effect on medical practice. Unfortunately, we now know it hasn’t. New research has been published that shows there has been no improvement, and in some cases the situation is worse than it was twenty years ago when women’s experiences of receiving prenatal diagnoses was first investigated.
Dr. Brian Skotko, director of the Down Syndrome Program at Massachusetts General Hospital, first reported on mothers’ experiences after receiving a prenatal diagnosis in 2005 (here and here). Now, twenty years later, Dr. Skotko and his colleagues have repeated their research to evaluate the progress made following the expansion of laws in twenty-three states that mandate factual, up-to-date, and positive information be provided to couples. In two different papers, “Parents of Children with Down Syndrome Reflect on Their Postnatal Diagnoses, 2003—2022” and “Prenatal Care of Parents Who Continued Pregnancies With Down Syndrome, 2003—2022,” the authors reveal disappointing results.
In the first paper, researchers report that since the first study published in 2005, “parents’ perceptions of the quality of postnatal medical support have declined, suggesting that legislative reform, medical education, and parent-to-parent outreach programs have been insufficient to effect a change in parental perceptions.” In the paper surveying prenatal care, the authors write that respondents “experienced substantial fear and anxiety and reported that their physicians provided insufficient contact information or explanatory materials.” Further, those who responded revealed that “an increased proportion of parents felt that their physicians encouraged pregnancy termination” following a prenatal diagnosis. Shockingly, 42 percent of parents reported that following a prenatal cell-free DNA screen—a non-conclusive screening test, not a diagnostic test—their physician encouraged them to abort the pregnancy. False positive results are very possible with this test; for that reason, ACOG recommends that if a cell-free prenatal screening test returns a positive result, “a diagnostic test is needed to determine if the fetus is truly affected.”
To quote again from the research: “One parent said doctors and staff ‘constantly pressur[ed] us to terminate’ and ‘treated us like we were crazy’ for refusing; that parent felt so “traumatiz[ed]’ that they changed providers. Another parent ‘got repeated calls to schedule a termination, even though we had all agreed to get an expedited anatomy scan before any decision was made,’ while another was repeatedly reminded ‘that I only had so much time left to terminate.’”
Receiving a positive prenatal screening result is traumatic, and parents react from that vulnerable position to the guidance and recommendations their physicians offer, potentially making decisions they will later regret. Pressure from physicians to quickly schedule an abortion after a positive result may deny parents the opportunity to consider the moral implications of their decision or seek advice from others. In this context, it is important for parishes and family members to consider that every positive screen or diagnostic test creates a vulnerability to abortion; without strong spiritual and familial support, parents may make a rash decision that causes profound guilt and leaves emotional scars difficult to heal.
So, now we know that the laws passed to protect parents following a prenatal diagnosis have failed in their intent. What can we do?
Parents reported they had hoped they would have had a more compassionate response from their physicians—that their providers would “be encouraging and supportive, sharing information that is accurate, timely, and sensitive to parents’ emotional vulnerability.” One person responded on the survey that “all the materials . . . received were outdated and the phone numbers and web addresses were invalid.”
Here are a few suggestions that readers might consider to help improve the situation for families who are vulnerable after a prenatal or postnatal diagnosis:
- When women visit their OB/GYN for regular appointments, ask if the office has information on hand to provide to patients who receive a positive diagnosis of Down syndrome. If so, congratulate them and ask for a copy to review. If not, make a suggestion or perhaps even offer to provide copies for them to distribute. If you find the information you are given outdated or inaccurate, offer constructive criticism and a better alternative. The Lettercase resources are the gold standard, but be aware that in order to be more certain of the resources’ acceptance and distribution, the authors mention briefly that “some pregnancies with Down syndrome do not come to term because of pregnancy loss or reproductive decisions.” In my opinion, that is simply a statement of fact and not an encouragement to abort.
- Marriage prep programs in parishes should include information on prenatal screening during conversations about the marriage vows and the promise to receive children lovingly from God. A copy of the Lettercase pamphlet on prenatal diagnosis might even be provided, or some other acceptable document that familiarizes a couple with challenges they may face in their future family and how to faithfully respond to them.
- Parishes should have a list available of pro-life doctors if any are known in their area.
- Pastors and their staff should be well informed on the issue of prenatal diagnosis and should have resources on hand to provide to couples who seek guidance at the parish.
- Keep the contact information for Be Not Afraid or other Catholic organizations that support families in crisis following prenatal diagnoses in your weekly parish bulletin and on the parish website.
It is clear from this discouraging research that many in the medical establishment are deeply entrenched in their attitudes toward disability and see abortion as the solution following a prenatal diagnosis. This twenty-year review has shown us that laws passed—often with heroic effort—have so far failed to improve the delivery of a prenatal diagnosis. So, those of us who are committed to all human life must find opportunities to act locally wherever we can to encourage life, to support parents who receive a prenatal diagnosis, and to discourage the destruction of life at every opportunity.