Why I'm in School

Yesterday, I saw this advertised in the daily auto-email I get from my school:

Ethics of Communicating Scientific Findings of Autism Risk

The School of Public Health is hosting a major conference on the communication of scientific findings of autism research that will feature leading researchers, scientists, journalists, families and health care providers today and Wednesday, October 6 and 7, 2009 at the National Constitution Center (525 Arch Street, Philadelphia).

The conference, "Ethics of Communicating Scientific Findings of Autism Risk," is being organized by Dr. Craig J. Newschaffer, a leading autism researcher and department chair at the School of Public Health, and Dr. Michael Yudell, a professor and expert in public health history and ethics at the School of Public Health. The focus of the conference is to work toward the development of strategies and guidelines for appropriate, ethical and effective communication of emerging autism risk factor research findings to the full range of interested audiences.

According to the conference’s organizers, findings from major new initiatives now underway have the potential to enrich understanding of the etiology of autism spectrum disorders (ASD). Given the intensity of public debate about causes for ASD, the communication of scientific findings presents significant difficulties and demands sensitivity.

For a complete list of invited speakers and more about the conference, visit http://publichealth.drexel.edu.

I, as you may know, am a graduate student in the Communications department. This was an announcement issued from the School of Public Health. About communicating risk. Um, hello! So... I crashed it this morning.

Here's the thing: communications is one of those disciplines where many of the times - for me at least - the research seems obvious. For example, an adolescent who has a TV in his/her room is more likely to engage in risky sexual behavior and at a younger age than a non-TV owning age-matched peer. Duh, right? But what is significant about this research is that the finding was stronger in higher income families than in lower income families. Now *that* is surprising. Examples like this have led me to buy-in to the school of thought that communications research as an essential part of any PR/health risk communication program.

The conference included KOLs from the autism community (patient/family advocates, science reporters, researchers, academics, genetic counselors, etc.). The organizers did a great job of assembling an incredibly diverse audience. BUT DID NOT INCLUDE ONE PERSON WHO STUDIES COMMUNICATION. I think that's a major failure. Here's why: the first speaker (first!) referred to autism as a "disease." A patient advocate in the audience immediately argued the use of the term and self-identified with the term "disorder" instead. Now, distinctions between "disease" vs. "disorder" and the downstream social implications of each term aside, this is a CLASSIC communications problem. In communications, the first step is to operationalize the subject, agree to definitions, and set some ground rules for talking about the subject. In particular, I thought it was a shortcoming not to include a communications rep as a referee BECAUSE the audience was so diverse. There is so much passion around autism research b/c it affects kids, and kids are a hot-button. Plus, so many of the audience members have autism or have family members with autism; it made it a very emotionally charged discussion. I think communications has a way to...not diffuse that charge, but get you talking about it in a different way so you never cross into the emotional realm.

Remember in debate team, you'd state your argument at the beginning and ask your opponent if they agree or disagree? Communications posits that question upfront. If we all agree to [operational terms, definitions, ground rules] than there is an exciting discourse. Today, without that agreement, however, I found the discussion was stilted and - at times- ran aground b/c there was umbrage and disagreement about language.

And it's important to get these questions answered, to lay some ground rules, because all these disciplines need to be in agreement on how we'll talk about autism. (Laying ground rules, btw, was stated as the intended objective of the conference by the meeting organizers. They intend to publish the definitions and ground rules decided at this conference so everyone else knows, too. I think that is a noble an exciting ambition!) One observer questioned if there was reluctance on the part of scientists to publish data that indicated environmental factor X is *not* associated with autism. All I could think was: you have no control over the message when there is a positive association! How will you manage the message when there is no association?! With new media (blogs, viral video, twitter, etc.) it is almost impossible to control/manage your message...yet ANOTHER reason why they needed to include a communications specialist in the audience. Do you know how much of communications research deals with how to control your message in new media? Geez! Wasted opportunity!

Regardless, I'm changing my major and moving to the School of Public Health in the fall. Boy-oh-boy did my compass just peg north!