Like most parents, after learning about the latest mass school shooting this morning, my thoughts immediately went to my own kindergartener. And of course, like most reading this blog, I thought about how poorly we handle guns and mental illness. Before too long, though, I couldn’t help but make a less direct connection between today’s events and my scholarly interests. I’m thinking of the way journalists cover school shootings as compared to how we regulate human subjects research.
As I write in The Heterogeneity Problem, 65 Admin. L. Rev. __ at 14-16 (forth. June 2013):
Studies on sexual abuse and assault, grief, war, terrorism, natural disasters and various other traumatic experiences are critical to better understanding and addressing these phenomena. But exposure to trauma — whether as a survivor or as a first rescuer or other third party — often causes substantial psychological morbidity. . . . Given their potentially fragile state, IRBs understandably worry that “questioning [or otherwise studying] individuals who have experienced distressing events or who have been victimized in any number of ways . . . . might rekindle disturbing memories, producing a form of re-victimization.”
IRBs — local licensing committees who operate according to federal statute and regulation and must approve most studies involving humans before researchers can even approach anyone about possibly participating — sometimes impose burdensome requirements on the way trauma research is conducted in order to protect adult subjects from the risk of revictimization. And they do so in addition to applying regulations that require that researchers disclose that risk (and others) to subjects.
Contrast this with the way journalists cover trauma. Continue reading
(By Alex Smith, MD, cross posted from GeriPal)
Full credit to the Onion for the title idea for this post, and thanks to James Mittelberger, MD for the tip.
We’ve ranted before on GeriPal about the terminology used by medical professionals and the media to describe patients’ struggle with serious illness: Senator Kennedy loses the battle with cancer, war on cancer, fighting the disease, etc.
The reason the Onion story is so funny is that it reduces the war metaphor to the absurd. If the normative approach is to fight the disease, then what does that say about those who accept the seriousness of their condition? It’s ridiculous to call someone who has come to terms with a poor prognosis, and chooses to focus on comfort rather than cure, a coward. But that’s what our societies normative standards for approaching serious illness would imply.
I’ll conclude by quoting from Patrice Villars, NP original post on this topic:
How many times have we all heard that someone is “a fighter”, “a survivor”? The rest of us must be wusses. How often do we hear of use terminology that is (inadvertently) offensive to an individual or others? If we see advance illness as a ‘battle’, then there IS necessarily a loser. The implication is that we have full control over our disease process and even our survival if we just have the right attitude. This is a dangerous concept and one we shouldn’t perpetuate. There is so much out in the world telling us what we are supposed to do so we don’t get sick, let alone die. And when we do get sick, we are subtlely shunned as having self-created our own suffering. (“Well, she had a type A personality, you know.” “She never ate properly. I told her to eat only organic macrobiotic foods.” Or, one of my personal favorites, “I guess he just gave up.”)
By Hosea H. Harvey, JD, PhD
Last week, Ohio joined the vast majority of states that have enacted laws designed to reduce long-term health consequences for youth athletes who suffer concussions (technically, traumatic brain injuries or TBIs) in organized youth sports activities. Based on my research for an upcoming article “Reducing Traumatic Brain Injuries in Youth Sports” (forthcoming, American Journal of Public Health), it appears that Ohio has followed the lead of most other states by adhering to a common framework and (at the same time) has substantially innovated with respect to certain key provisions of such laws.
Most youth sports TBI laws are organized around three broad risk-reduction methods: 1) educating parents, youth athletes, and/or coaches, 2) requiring the removal of youth athletes suspected of having concussions, and 3) providing criteria that a youth athlete must meet prior to returning to athletic competition. Each of these methods are, in part, derived from legislation crafted after a tragic football injury to Zachary Lystedt in Washington, leading the state to pass the nation’s first such law in April 2009. (You can read the law on LawAtlas™) Since then, adherence to the “Lystedt framework” has been a common feature of state-level youth sports TBI laws. In this fast-paced legislative environment, unprecedented in scope, Ohio is relatively late to the game. Yet, by moving later, Ohio’s deliberate speed has resulted in legislation that relies on the Lystedt framework but also contains innovations of uncertain efficacy.
Last call! Abstracts for the Petrie-Flom Center’s annual conference – this year entitled “The Food and Drug Administration in the 21st Century” - are due today. This one and a half day event will take place Friday and Saturday, May 3-4, 2013, at Harvard Law School in Cambridge, Massachusetts.
For further details, see the Call for Papers/Presentations.