Pennsylvania has enacted a new law that requires health care practitioners to provide educational information to parents who receive a test result that is positive for Down syndrome. Dubbed “Chloe’s law” by its sponsors, the Down Syndrome Prenatal and Postnatal Education Act (Act 130 of 2014) was signed by Governor Corbett on July 18th.
Act 130 requires that, upon receiving a test result that is positive for Down syndrome, health care practitioners must provide the expectant or new parent with educational information made available by the Pennsylvania Department of Health (DOH).
The information to be developed by DOH will include evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations. Included will be information about:
- Physical, developmental, educational, and psychosocial outcomes
- Life expectancy
- Clinical course
- Intellectual and functional development
- Treatment options
The information must also include contact information for first call programs and support services, hotlines specific to Down Syndrome, relevant resource centers, clearinghouses and national and local Down Syndrome organizations.
The law has created some controversy. Marie McCullough reports in the Philadelphia Inquirer that the law is opposed by the American College of Obstetricians and Gynecologists on the grounds that it interferes with the physician-patient relationship. The law is also opposed by the Pennsylvania Medical Society.
Although its sponsors argue that it is an information law rather than a pro-choice or pro-life law, some pro-choice advocates disagree. And Ms. McCullough notes in the Inquirer that advocates for the law “hope the information will discourage women from aborting affected fetuses now that noninvasive genetic testing is making diagnosis easier, earlier and more accurate.”
Despite any controversy, Act 130 passed by the State House by a vote of 196 to 4, and the State Senate by a vote of 50 to 0.
Pa. law mandates information with Down syndrome diagnosis (Philadelphia Inquirer)
New Down syndrome law ensures moms-to-be greater access to available help (Pittsburgh Post-Gazette)