Prenatal Trisomy Diagnosis Awareness Act

With Minnesota's Governor threatening to veto the bipartisan education funding bill later today, sending the legislature into a special session this summer, I'm happy to report that something positive came out of this past session.  On Monday, Governor Dayton signed the Prenatal Trisomy Diagnosis Awareness Act.  It passed unanimously in the House and 58-1 in the Senate.  That doesn't happen much anymore!

Effective August 1st, health care practitioners in Minnesota who perform genetic tests on pregnant women for Patua syndrome (trisomy 13), Edwards syndrome (trisomy 18), or Downs syndrome (trisomy 21), will have to provide specific information if the results are positive. The information has to include "up-to-date and evidence-based information about the trisomy conditions that has been reviewed by medical experts and national trisomy organizations", including expected "physical, developmental, educational, and psychosocial outcomes", life expectancy, and contact information for nonprofit organizations that provide information and support services for trisomy conditions.

You'd think such information should be routinely given, but 20  years ago when I received a diagnosis of Trisomy 21 for my son, it certainly was not part of anything I got from our genetic counselor or doctor; anectodal evidence suggests things aren't much different now.

According to my friends (and a former student) at the Minnesota Catholic Conference, some of the key factors in getting passed were the diverse coalition of supporters, bipartisan authorship, pepole with disabilities serving as the principal public advocates, and message discipline (this is an information bill--and who is against more information?  Well, based on the sole vote against this, apparently Senator Katie Sieben.)

Though similar bills have been passed in six other states [Massachusetts (2012), Kentucky (2013), Pennsylvania (2014), Maryland (2014), Louisiana (2014) Delaware (2014), and Ohio (2014)]  Minnesota's is the first to include Trisomy 13 and 18.  Anyone who wants information on this bill or the background of its passage, feel free to contact Jason Adkins, Executive Director of the Minnesota Catholic Conference.