Pelletier Opinion Pieces: Best and Worst

In addition to the news articles on the Justina Pelletier case there have been some interesting opinion pieces written.  I will discuss the worst and best pieces I found in this post

The Worst

“The Blaze,” is the offender for the worst opinion piece: “What We Found in a Boston Children’s Hospital Policy Manual About Research on ‘Wards of the State’”

The article talks about a policy at Boston Children’s Hospital (BCH) allowing wards of the state to be enrolled in clinical research under certain circumstances.  The BCH policy is as follows:

“Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit (46.406 (50.53) or 46.407 ( 50.54) only if the [institutional review board] determines and documents that such research is

Related to their status as wards; or

Conducted in schools, camps, hospital, institutions, or similar settings in which the majority of children involved as participants are not wards.”

I have worked in clinical research for several years, currently work in pediatric clinical research, and have my Masters degree in Research Ethics, so I can tell you without a doubt that this policy is normal.  It follows the federal regulations for research involving minors, and is standard for institutions participating in pediatric clinical research. 

The article above insinuates that this policy allows BCH to use wards of the state as guinea pigs for their research when in fact it mandates additional restrictions to prevent this from happening.  In the end, we don’t even know if Justina has been enrolled in any clinical trials at BCH, so the whole issue is moot and this article pretty pointless.  I am usually impressed with the reporting of The Blaze, but was extremely disappointed with the sensationalized nature of this story.

When this kind of misinformation is spread, it creates an unnecessary fear of clinical research by patients and families.  The clinical research world has worked very hard for many years to make trials as safe as possible and we constantly reevaluate the regulations to make sure we are protecting participants in the right way.  Clinical research is vital to medical advancement and to see it turned into a way of inciting fear makes me very angry.

The Best

The best opinion piece I found was an article by Lauren Stiller Rikleen: “A Cautionary Tale: How Unconscious Biases Can Deliver Flawed Medical Judgments”

The Pelletier family was told that one of the reasons the Massachusetts Department of Children and Families (DCF) was called is because they were being too difficult about their daughter’s treatment.  The article above advises physicians to use caution when judging a family’s reaction in medical situations, and not to bring social services into the picture too quickly. 

It is entirely normal for parents of a chronically sick child to be emotional when their child is at the hospital, also these parents care for the child day after day and are usually well versed in their child’s medical needs.  It can be frustrating for these parents to explain their child’s needs over and over to different physicians, knowing what the child needs, but having to navigate another medical institution to get it.  This stress makes some families difficult to deal with as a hospital staff member, but this in no way means they are unfit parents or that their child is better off as a ward of the state. 

The author also has a child under the care of Dr. Korson, Justina’s Tufts physician, so this brings an added element of insight to her perspective on this case.  The article was very well thought out and very well written.