Advocacy in Disguise: A Parent’s View on Exploitation of the Vulnerable

March was Trisomy Advocacy Month.  How could I have missed that one?  I hate to admit that I have a favorite trisomy, but it is true.  Trisomy 21 a/k/a Down syndrome.

People with Down syndrome are increasingly integrated into the mainstream of life.  And this is because parents and others have been incredibly successful in advocating for this unique group of people. The results have been astounding.  But there is so much more to do.  And no one knows that better than the parents of kids with Down syndrome.  So any chance for advancement re-ignites the hopes that this person will have a more a “typical” (normal) life.

This week one of the parents of one of my hundreds of patient with Down syndrome told me of her adventure in advocacy regarding several articles written about a research grant given to a reputable and very productive laboratory at Roswell Park Cancer Institute.  While I understood how genetic research in a cancer institute might have great value to understanding developmental disabilities non-cancer conditions, I also could see the legitimate reactions of a parent with a child with Down syndrome.

The mother of my patient thought her daughter’s condition was exploited in a way that wasn’t fair.  She tried to have it published in the Buffalo News.  It was rejected.   When I read the stories and read her opinion, I thought it worthwhile to share it with my readers for us to better understand the sensibilities and sensitivities of these vulnerable populations.  Please share your comments.

People with Down Syndrome Bring New Hope to Cancer Research

By Kristina Syracuse

As a parent of a child with Down syndrome, I was thrilled to learn that Dr. Eugene Yu, Associate Professor in the Department of Cancer Genetics at Roswell Park Cancer Institute received a 3-year $250,000 grant from The Children’s Guild Foundation to continue identifying “all the major causative genes for Down Syndrome-associated developmental and intellectual disabilities”. Evidently, this was the second grant given to Dr. Yu by The Guild; the first being delivered in 2010.

With guarded optimism, I devoured the Roswell-written press release entitled; Hope for People with Down syndrome which states; “the long-term goal of this research is to develop effective drugs to significantly ease Down syndrome associated developmental and intellectual disabilities”.

How Wonderful! My mind transported me to a future when the impact of my daughter’s disability would be mired by a daily vitamin-type, Roswell-developed ‘pill’ that would act to diminish the debilitating effects of her extra 21^st chromosome on her body as well as her mind. Surely, she’ll lead a more rewarding and productive life with the help of Roswell’s research and the generous people who support it!

But wait, I thought. Roswell is not in the business of treating developmental disabilities. In fact, their mission statement is to understand, prevent and cure cancer. Why would they be interested in a disabled population that’s routinely terminated prenatally at a rate exceeding 90%? There must, I thought, be an explanation, an “other” reason.

The ‘other’ reason was found tucked away in an ‘other’, less circulated Roswell Park- published press release that states the following; “the incidence of solid tumors like breast cancer among individuals with Down Syndrome is remarkably lower when compared to people of the same age who do not have Down syndrome. This suggests there is a powerful gene or genes on Trisomy 21 that suppress the growth of solid tumors”.

Of course! The real reason why Roswell is so interested in an otherwise neglected, throw-away segment of the population is to study and harvest the “IT” which lowers the incidence of solid tumor growth in individuals with Down syndrome. Candidly summed up in a quote by the recipient of the grant, Dr. Yu himself; “The long-term goal of this project is to fully understand the underlying molecular mechanism and possibly discover more effective strategies for preventing and treating solid tumors in the general population”.

But, didn’t the Children’s Guild generously donate the $250,000 according to their mission statement; “To support and advocate for health care, research, education and therapeutic recreation for children with special needs?” And, didn’t Roswell agree to ease Down syndrome-associated development and intellectual disabilities in order to secure the grant money?

When it comes to cancer and to Down syndrome, the last thing anyone needs is more empty promises, no matter how slightly the truth is bent to make things look more appealing, profitable or palatable. Perhaps Roswell and The Children’s Guild should just admit that what they call “New Hope” for Down syndrome people is just a fortuitous side effect of the research in progress; the primary goal of which has nothing obvious to me with improving the lives of Down syndrome people.

I don’t dispute that cancer research deserves as much attention and resources as we can afford. However, I resent the misleading publicity intended to persuade people that Roswell’s objective, in this case, is to help individuals with Down syndrome when it seems clear that they, and the money meant to support them, are simply being used as a means to an undisclosed, albeit honorable end.