Gov. Jack Markell signs into law the Down Syndrome Information Act
Last week, Governor O’Malley of Maryland and then Governor Markell of Delaware each signed laws requiring that their state agencies provide accurate, up-to-date information about Down syndrome for parents receiving a test result. They join Massachusetts (2012) and Kentucky (2013) in passing such legislation.
Delaware
Delaware joins Massachusetts and Kentucky exactly in what is required, passing in substance the exact same laws as passed in those states. So, now in Delaware, Massachusetts, and Kentucky anyone delivering a test result for Down syndrome to parents is required to provide accurate, up-to-date written information and contact information to local Down syndrome support organizations. Delaware hopefully will further join Massachusetts and Kentucky in identifying the same written information and resources to further standardize the way prenatal testing and postnatal diagnoses are administered.
Maryland
Gov. O’Malley signs Maryland’s Down Syndrome Information Act
Maryland also passed a law providing information. Compelling testimony was taken during the hearings on the pending legislation:
When Heather Sachs’ daughter was born with Down Syndrome eight years ago, she wasn’t given helpful information or the names of parent groups offering advice and support.
Instead, Sachs tells Maryland lawmakers, she was simply handed a pamphlet, entitled “So You’ve Had a Mongoloid: Now What?”
On the audio of the Senate Finance Committee hearing where she testified, the gasps from lawmakers and attendees are audible.
The Maryland law initially was identical to that of Massachusetts, Kentucky, and Delaware. But, in the sausage-making of public policy, a key change was made. Instead of requiring that physicians and other health care providers deliver accurate, up-to-date information identified by state agencies, health care providers are merely authorized to deliver that information which they may or may not. So, despite the passage of the law, Ms. Sachs’ same OB could ignore the materials identified by the State and still give out the pamphlet “So You’ve Had a Mongoloid: Now What?”
Hopefully, through executive action, Governor O’Malley will require that every prenatal test or postnatal diagnosis paid for in any way through public dollars shall be accompanied with the written resources identified by the State pursuant to the law. And, hopefully, physicians who want to ethically care for their patients will provide the information identified by the State, and not “So You’ve Had a Mongoloid: Now What?”
Regardless, these laws are reason to celebrate. Each is a measure of public policy emphasizing that women need accurate written information when receiving a Down syndrome test result and should be referred to their local Down syndrome parent support organization. Something long called for by professional guidelines, but still to this day, something ignored or not complied with by too many medical professionals.
Congrats Delaware and Maryland: welcome to the club of states trying to ethically care for parents receiving a Down syndrome test result.
I thought VA had a similar law but I can’t find it right now. Can you direct me? Thanks!
Sort of, Heather. The law is Virginia Code Sec. 54.1-2403.01.B and states:
As a routine component of prenatal care, every practitioner licensed pursuant to this subtitle who renders prenatal care, including any holder of a multistate licensure privilege to practice nursing, regardless of the site of such practice, upon receipt of a positive test result from a prenatal test for Down syndrome or other prenatally diagnosed conditions performed on a patient, the health care provider involved may provide the patient with information about the Virginia Department of Health genetics program website and shall provide the patient with up-to-date, scientific written information concerning the life expectancy, clinical course, and intellectual and functional development and treatment options for an unborn child diagnosed with or child born with Down syndrome or other prenatally diagnosed conditions. He may also provide a referral to support services providers, including information hotlines specific to Down syndrome or other prenatally diagnosed conditions, resource centers or clearinghouses, and other education and support programs. For the purposes of this section, “prenatally diagnosed condition” means any fetal health condition identified by prenatal genetic testing or prenatal screening procedures.
So a bit of “shall” and “may.” It’s been a law since 1995 and updated most recently in 2008. I wonder how it’s actually being implemented.