At the end of 2014, Ohio joined the states in passing the Down Syndrome Information Act (DSIA). Almost a year later, its Department of Health has issued the fact sheet to be provided all patients. Let’s take a look at it.
Pursuant to House Bill 552 (codified as Ohio Revised Code 3701.69), Ohio’s version of the DSIA, health care professionals delivering a test result indicative of Down syndrome are required to provide their patients the fact sheet developed by the Ohio Department of Health.
The fact sheet begins:
A good start. It starts off with the genetic basis for Down syndrome, reassures parents they had nothing to do with causing it, and ends by noting things have never been better for living a life with Down syndrome due to advances in health care, education, and–critically–public attitudes.
The fact sheet then distinguishes between screening and diagnostic testing. It does a commendable job of explaining how screening tests are not diagnostic and can only be confirmed through diagnostic testing, which has a risk of miscarriage. Aside from saying the newest screens test cell free fetal DNA–when tests like MaterniT21, verifi, etc. test cell free DNA from the placenta–and from failing to note that CVS diagnostic testing can test the same placental DNA instead of fetal DNA, the fact sheet does a serviceable job explaining the differences in the kinds of testing.
Then, the fact sheet has a bulleted list for “Understanding Down Syndrome.” And, here’s where the trouble arises.
The bulleted list is as follows:
This list is taken almost verbatim from the National Society of Genetic Counselors (NSGC) guidelines for delivering a Down syndrome diagnosis. Moreover, those recommendations are based on a study that identified what physicians and parents had identified as the essential information to share with patients. But, “essential” means just that–the necessary information to share with expectant parents that is accurate, balanced, and provides a fair view of a life with Down syndrome, with all of the information listed being essential.
Reviewing Ohio’s bulleted list, does it do that?
Here’s the full list as recommended by the NSGC; you’ll see the critical information that Ohio’s Department of Health left out:
Do you see what is missing?
The blue check marks are what the Ohio Department of Health copied into its fact sheet. But the box is what was left out. It’s exactly the information that parents had identified as more important than the medical issues associated with Down syndrome.
Parents understand that medical professionals are going to cover the medical aspects of the condition, but what they most want to know is what can a life with Down syndrome be like. This is not explained by only listing possible medical complications. Instead, parents want to know how their child will engage in school, with others, and in life. A list of possible medical issues does not present this balanced, accurate picture of a life with Down syndrome.
To be fair, the fact sheet, further down from the bulleted list, acknowledges the following:
The above paragraph, however, is not broken out as bullets for “Understanding Down Syndrome,” but is rather under a section titled “Getting More Support.” And that last sentence may be the most revealing of all.
The last statement–“that the majority of adults with Down syndrome report that they are happy with their lives”–cites a study conducted by Dr. Brian Skotko and his colleagues. Now, what does “majority” mean to you when you read it? To me, and I think to an expectant parent dealing with the shock of a test result, and having emphasized the medical complications, could reasonably be expected to understand “majority” to mean, “just over half.” Meaning, that almost half, or a significant minority reported that they were not happy with their lives.
What were the actual findings by Dr. Skotko, et al.?:
99%, isn’t a “majority”–it’s an overwhelming majority.
The Ohio Department of Health chose to leave out the balancing information from its bulleted list of what was needed to understand Down syndrome and misrepresented the survey results that could be read to suggest almost half of all individuals were not happy with their lives when, in truth, the results showed that almost all were happy with their lives.
Pursuant to Ohio’s DSIA, the Department of Health is to “periodically review and update the information sheet.”
An update is in order.
My thanks to the Up Side of Downs, the support organization for the Greater Cleveland area, for hosting me for a medical outreach presentation in which this analysis was first presented.