Down Syndrome Advocates Call for HHS Mandate to Be Rescinded

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FOR IMMEDIATE RELEASEFebruary 18, 2012Contact: International Down Syndrome Coalition for LifeEmail: idscforlife@...

Down Syndrome Advocates Call for HHS Mandate to Be RescindedUnder the recently finalized Health and Human Services (HHS) regulations, private insurers will be required to provide no-cost prenatal genetic testing for all expectant mothers. As currently written, the HHS mandate for prenatal genetic testing is discriminatory and unethical. Unless revised to provide all of the needed information and support to expectant mothers undergoing prenatal testing, International Down Syndrome Coalition for Life (IDSC) calls for the mandate to be rescinded.

The mandate is part of the Patient Protection and Affordable Care Act’s (PPACA) requirement for no-cost preventive care services for women. This is what makes the mandate especially objectionable. According to Mark Leach, Down Syndrome of Louiseville, (DSL) Board President, “DSL has counseled expectant mothers who have received a prenatal diagnosis and used that information to prepare for their child’s birth, to create an adoption plan, or to terminate their pregnancies. Nothing, however, about prenatal genetic testing prevented their unborn child from having Down syndrome.” Including prenatal genetic testing as a “preventive” service expresses a discriminatory view that the U.S. government believes unborn children with Down syndrome should be prevented.

Our generation’s civil rights issue.Today, it is Down syndrome that is at the forefront of prenatal genetic testing. But that same technology promises to eventually detect every genetic trait. Already genetic traits are associated with certain forms of autism. Some argue there is a genetic basis for homosexuality. Under the HHS mandate, expectant mothers will be able to demand no-cost prenatal genetic testing in order to “prevent” these conditions as well. Rather than be the result of a bureaucratic regulation, this issue should be publicly debated by our elected officials.

Not a pro-life or a pro-choice issue, but a pro-information issue.Since 2007, medical organizations have recommended that prenatal genetic testing for Down syndrome be offered to every expectant mother. But these recommendations are silent on whether the testing should be free. Studies show that expectant mothers do not make informed decisions about prenatal testing. When the cost element is removed, that will only increase the sense that prenatal genetic testing is routine and should be accepted.

The current HHS regulations only require part of the information. Medical organizations have recognized the need for better training of medical professionals; better written materials about Down syndrome to be provided expectant mothers; and, that expectant mothers’ best source of information is from parent support organizations. The HHS mandate, however, only covers the testing itself, and provides no funding for these other needed resources for women to make informed choices about their pregnancies.

If this is truly about women’s health, then the current mandate for no-cost prenatal genetic testing should be removed from the PPACA’s provisions for preventive care. Instead of investing billions into testing to prevent lives with Down syndrome, the IDSC calls on that investment to be made in providing accurate information about Down syndrome and funding for support organizations. This is the needed support resources so that expectant mothers can make decisions not based on fear or ignorance, but based on up-to-date information knowing that support is there for them and their children with Down syndrome.

About the IDSC for LifeFounded in 2008, the International Down Syndrome Coalition for Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis. We believe that ALL life is precious! For more information about the IDSC, please visit our website at www.idscforlife.org