“Chloe’s Law” Provides Expectant Moms With Information on Down Syndrome

State   Mark Bradford   Jul 29, 2014   |   10:08AM    Harrisburg, PA

On July 18, Pennsylvania Governor Tom Corbett signed into law the “Down Syndrome Prenatal and Postnatal Education Act” commonly known as “Chloe’s Law”. Pennsylvania became the 7th state to implement legislation intended to provide to new and expectant parents “Up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations” and also “contact information regarding First Call programs and support services”.

Pennsylvania’s law, as is true with the majority of other state laws, reflects the common ground first established in the 2008 federal legislation, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. That Act was co-sponsored by Senators Kennedy and Brownback, again showing the common ground agreement that women should receive all of the information recommended by professional guidelines.

chloekondrichThe need for Chloe’s law is two-fold: [1] the Kennedy-Brownback Act has never been funded or implemented, which is why states have taken on state-level measures; and [2] while professional guidelines recommend offering prenatal testing for Down syndrome to all patients, those same guidelines recommend that patients receive up-to-date, accurate information about Down syndrome and referral to parent support organizations, but that is not happening with the same regularity as the offering of prenatal testing.

Author Tara Murtha responded negatively to Chloe’s Law in an editorial published at RealityCheck.org on July 25. At its website, RealityCheck describes itself as a “daily publication providing news, commentary and analysis on sexual and reproductive health and justice issues” that claims to contribute “to the global effort to empower people with the information, services and leadership they need to safeguard their sexual and reproductive health and rights against false attacks and misinformation”. It is peculiar that a site dedicated to countering misinformation would criticize and make false attacks against a law whose very purpose is to ensure that women are fully and factually informed with accurate information regarding the outcomes of a prenatal diagnosis, should that diagnosis reveal the child has Down syndrome.

Ms. Murtha has made Chloe’s Law about something that it is not. In citing the bill’s sponsors positions on abortion she implies that the purpose of the law is to, in some way, restrict a woman’s right to abort a child following a prenatal diagnosis. There is no language in the law that would imply even an incremental move toward restricting access to abortion.

The sole purpose of the law is to provide to women evidence based information on the outcomes of having a child with Down syndrome. After that, they are free to make whatever decision they choose. She also joins the Pennsylvania Medical Association in criticizing the law because it requires physicians to provide information to women prepared by a third party, thus interfering in communications between the patient and physician.

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Murtha misleads her readers by claiming that the law requires that doctors read a script to patients developed by the Pennsylvania Department of Health. On the contrary, the law states that it will be the Department of Health’s responsibility to make available on their website information reviewed by medical experts, including information on physical, developmental, educational, and psychosocial outcomes, life expectancy, clinical course, intellectual development and treatment options. Dangerous and intrusive information, to be sure.

A true reality check reveals why provision of this information may be necessary. During debate over the Maryland law earlier this year, Heather Sachs gave testimony that 9 years ago when she received the result of her prenatal diagnosis she was simply given a pamphlet entitled So You’ve Had a Mongoloid: Now What?

Stories like hers are not uncommon. For too long, study after study, and parent testimony after testimony, has demonstrated that prenatal testing for Down syndrome has never been administered according to the full professional guidelines because too often parents are simply told the test result and that is it. In a recent study, women reported negative experiences of receiving a prenatal diagnosis outnumbering positive ones 2.5 to 1.

Chloe’s Law implements the guidelines physicians were supposed to be following but have not done so consistently. This law is a caring law that will improve patient care. That is why it has received the broad, near unanimous bipartisan support it deserves. Let’s stand for providing women information, not for denying them information about a condition that remains too often misunderstood – even within the medical community.

LifeNews Note: Mark Bradford is the President of the Jérôme Lejeune Foundation