Targeting Down Syndrome by Regulation?

Excerpt from "Targeting Down Syndrome by Regulation," The Witherspoon Institute. September 6, 2011--Last month, my daughter Juliet began second grade, where her mother and I expect her to maintain her B+ average on spelling tests and straight A’s in Chinese. In addition to being a loving daughter and big sister, Juliet also is endowed with Down syndrome. At the start of the month, the Department for Health and Human Services (HHS) announced that future births of children like Juliet should be prevented. Down syndrome is the most common genetic cause of intellectual disability and, as such, will be targeted in the new HHS regulation’s free nationwide prenatal testing program.

Discussions of HHS’s new regulation have focused on the required availability of free contraceptive services under the Patient Protection and Affordable Care Act (PPACA). The regulation is the result of HHS’s adopting, in its entirety, the Institute of Medicine’s (IOM) report on Clinical Preventive Services for Women. Buried in the IOM report is the recommendation for no-cost well-woman visits; these visits include prenatal care—and thus prenatal testing for “genetic or developmental conditions.” The regulation was issued as part of the PPACA’s coverage of preventive services. This prompts the question, how does prenatal testing prevent Down syndrome?

The IOM report defines preventive services “to be measures . . . shown to improve wellbeing, and/or decrease the likelihood or delay the onset of targeted disease or condition.” Down syndrome occurs at conception. Prenatal testing simply identifies whether a pregnancy is positive for Down syndrome—a prenatal diagnosis after which most women choose to terminate their pregnancy. A prenatal test does not decrease the likelihood of Down syndrome in a person; it does allow for a decreased likelihood of a person with Down syndrome surviving beyond the womb. If this is how HHS is justifying prenatal testing for Down syndrome as preventive care, then HHS has ushered in a program meant to target future Down syndrome children. The targeted elimination of people with Down syndrome is, in fact, the goal of other countries that have adopted nationwide prenatal testing programs—a goal some other countries are now realizing. Indeed, according to the Copenhagen Post, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future,” due to its nationwide prenatal screening program, in place since 2004.

Robert Resta, a Genetic Counselor, notes in August’s American Journal of Medical Genetics that “there is very little empirical evidence that prenatal knowledge improves medical, developmental, emotional, or adaptational outcomes.” Further, studies have found that prenatal testing increases the mother’s anxiety, regardless of the test results; that women often do not make informed decisions about accepting prenatal testing or decisions made after a diagnosis and that, when abortion is the chosen response, a significant number of women experience post-traumatic stress.

Prenatal testing for Down syndrome should not be labeled as preventive medicine—an inaccurate and misleading description of a procedure that may prevent Down syndrome births, but certainly does not prevent Down syndrome. A regulation should not be allowed to target a portion of our society for elimination without public debate by accountable elected officials. If the regulation is to remain in place, then additional funding should be provided for all the information required to respect a woman’s choice following a prenatal diagnosis. The President and the Congress should see that the new HHS requirements for preventive care expressly exclude coverage of prenatal testing for Down syndrome unless and until there is public debate and balanced funding for the needed resources.

Developmental and Behavioral Pediatrician, H. Patrick Stern, MD: "Juliet and her parents speak loudly of the very meaningful quality of life and blessing in the lives of other people which children with Down syndrome create. Children with Down syndrome can become a star on TV as Chris Burke did who played Corky in 'Life Goes On'. The pioneer research demonstrating the effectiveness of early intervention programs for children was conducted on children with Down syndrome. Every special needs child now benefits from early intervention.

"The 1973 U.S. Supreme Court decision Row vs Wade changed the practice of medicine in our country. Now a million children, most of whom have no abnormality, are aborted each year. Euthanasia has become a treatment option in adults, too. The Hippocratic Oath trusts a physician 'to be careful to cause no intentional harm' and 'will not help a woman obtain an abortion.' The right of conscience, which allows physicians to not be involved in practicing medicine if it violates their moral standards, is being challenged at this time in our country.

"When any life is devalued, particularly when it is a vulnerable child or elderly adult, every life is devalued. The Hippocratic Oath states that a physician 'should maintain the utmost respect for human life, carefully guarding the role as healer.' Our profession should maintain these standards even if laws and public opinion wants us to change these historical values. Physicians should not become enablers."

Resources
CMDA Ethics Statement - Abortion
CMDA Ethics Statement - Right of Conscience