Twitter Round-Up (1/27-2/7)

By Casey Thomson

Even the surprisingly resurrected Richard III (on the Twitter-sphere, anyway) appreciates bioethics concerns. Read on to find out more about Richard III’s eagerness for patient confidentiality and other updates in this week’s (extended) Twitter round-up:

  • Stephen Latham (@StephenLatham) included a link to his blog post challenging Andrew Francis’ recent claim that penicillin was the central drug spawning the sexual revolution of the 1960s. While penicillin may have facilitated the widespread acceptance of pre-marital relations, it was The Pill that “translat[ed] that newfound sexual freedom into sexual equality.” (1/28)
  • Dan Vorhaus (@genomicslawyer) posted a summary video regarding the Neanderthal baby story that rocked the internet in the past few weeks, as reported by Taiwan’s Next Media animation. (1/28)
  • Michelle Meyer (@MichelleNMeyer) shared a news report on Israel’s recent admittance to giving birth control to Ethiopian Jewish immigrants, frequently without either consent or knowledge. Concerns first arose after an investigative journalist began to explore why birth rates in the community had fallen so drastically and seemingly inexplicably. (1/28)
  • Arthur Caplan (@ArthurCaplan) linked to a piece explaining the future implications and consequences of the guidance requiring schools to make “reasonable modifications” in order to include students with disabilities in either general athletic programs or provide them with parallel opportunities. The guidance, while a potential huge move forward for individuals with disabilities, nonetheless will be nothing without “tough and honest conversation about financing and revenue – and soon.” (1/28)
  • Michelle Meyer (@MichelleNMeyer) retweeted an article showing the return of the “invisible gorilla” from the 2010 book, but this time in the fake CT scans shown to both expert radiologists and volunteers alike. The gorilla was large in size compared to the typically indicative nodules, and was unmistakably a gorilla, but yet 20 out of the 24 radiologists failed to see the gorilla. It’s a frightening real-life example of what the original study’s jargon terms as “inattentional blindness.” (1/29)
  • Kevin Outterson (@koutterson) live tweeted the Pew meeting concerning new antibiotic development pathways for limited populations. See the string of tweets on his Twitter page for further details of how the meeting proceeded. (1/31)
  • Daniel Goldberg (@prof_goldberg) shared a link describing the first scientific evidence suggesting that doctors can “truly feel” their patients’ pain. The study, done by Harvard researchers, used brain scans to indicate activated regions of physicians’ brains during a simulated interaction with patients. (2/1)
  • Frank Pasquale (@FrankPasquale) linked to a story on the problems associated with over-prescribing amphetamine-based medications, particularly to teenagers and young adults. While focusing on the individual story of an aspiring medical student named Richard Fee, the author delves into the underexposed side effects of often overzealous prescribing and the surprisingly casual attitude that most Americans hold towards this medication. (2/3)
  • Frank Pasquale (@FrankPasquale) also posted a piece inspired by the talk surrounding World Cancer Day on the problems related to cancer treatment in developing countries. Contrary to being solely a problem of so-called developed nations, cancer remains an issue globally – including such cancers that are caused by an infectious agent. Fighting the false notions – that cancer in developing nations is minimal, that it is always not “catchable,” and that enough care (particularly vaccines) is being delivered – is essential to reducing the global inequity in cancer treatment. (2/4)
  • Michelle Meyer (@MichelleNMeyer) retweeted the (supposedly resurrected and technologically adept) Richard III’s tweet regarding publication of details surrounding his newly-identified bones: “Hmmm not so happy about my physical attributes being discussed in public. What happened to patient confidentiality ???” (2/4)
  • Daniel Goldberg (@prof_goldberg) shared a report on a new study that found a correlation between low self-esteem and female body representation and obsession in “chick lit.” The report noted that the results suggested a possible “intervention tool” by having characters seek support from friends and family for such body concerns. (2/5)
  • Michelle Meyer (@MichelleNMeyer) retweeted a graphic eloquently summarizing one of the simplest and most potent arguments in favor of vaccination, and arguably the greater biopharmaceutical industry. (2/6)

Note: As mentioned in previous posts, retweeting should not be considered as an endorsement of or agreement with the content of the original tweet.

Upcoming Event with Jonathan Lazar

Jonathan Lazar on Locked Out: Investigating Societal Discrimination Against People with Disabilities Due to Inaccessible Websites

Wednesday, February 13, 2013 | 4:00 pm

Sheerr Room, Fay House, 10 Garden Street, Cambridge

Jonathan Lazar is a professor of Computer and Information Sciences, director of the undergraduate program inInformation Systems, and founder and director of the Universal Usability Laboratory, all at Towson University. His research in human-computer interaction focuses on understanding how people with disabilities interact with technologies, how improved interface design can change the quality of life for people with disabilities, and how human-computer interaction and public policy influence each other.

With his fellowship project as a Radcliffe Fellow, Lazar seeks to improve understanding of the relationship between web-based interfaces that are inaccessible to people with disabilities, and how those inaccessible interfaces lead to forms of discrimination that are illegal under US law. As part of the project, he is writing a book about the topic and collaborating on research with the Harvard Law School Project on Disability. For his fellowship presentation, he will discuss equal access to web-based information and societal discrimination in five areas: federal government, state government, county-level emergency alert information, airline reservations, and employment applications.

Lazar has published more than 120 refereed articles in journals, books, and conference proceedings. He has also authored three books and edited three, including Research Methods in Human-Computer Interaction (Wiley, 2010), Universal Usability: Designing Computer Interfaces for Diverse User Populations (Wiley, 2007), and Web Usability: A User-Centered Design Approach (Addison Wesley, 2006). He was awarded a 2011 University System of Maryland Board of Regents Faculty Award for Public Service, a 2010 Dr. Jacob Bolotin Award from the National Federation of the Blind for working towards achieving the full integration of the blind into society on a basis of equality, and a 2009 Innovator of the Year Award from the Maryland Daily Record for his work on improving the accessibility of web-based security features. He earned MS and PhD degrees in Information Systems from the University of Maryland, Baltimore County, and a BBA degree in Management Information Systems from Loyola University Maryland, where he received the Rev. Daniel McGuire SJ Alumni Association Service Award. He currently serves as chair of public policy for ACM SIGCHI (the Association for Computing Machinery Special Interest Group on Computer-Human Interaction).

This event is free and open to the public. ASL interpretation will be provided. Please forward this notice to anyone who may be interested in attending. 

For more information or to request any disability-related accommodations, please visit www.radcliffe.harvard.edu or call (617) 495 – 8212.

Are You Ready for Some . . . Research? Uncertain Diagnoses, Research Data Privacy, & Preference Heterogeneity

By Michelle Meyer

As most readers are probably aware, the past few years have seen considerable media and clinical interest in chronic traumatic encephalopathy (CTE), a progressive, neurodegenerative condition linked to, and thought to result from, concussions, blasts, and other forms of brain injury (including, importantly, repeated but milder sub-concussion-level injuries) that can lead to a variety of mood and cognitive disorders, including depression, suicidality, memory loss, dementia, confusion, and aggression. Once thought mostly to afflict only boxers, CTE has more recently been acknowledged to affect a potentially much larger population, including professional and amateur contact sports players and military personnel.

CTE is diagnosed by the deterioration of brain tissue and tell-tale patterns of accumulation of the protein tau inside the brain. Currently, CTE can be diagnosed only posthumously, by staining the brain tissue to reveal its concentrations and distributions of tau.[1] According to Wikipedia, as of December of 2012, some thirty-three former NFL players have been found, posthumously, to have suffered from CTE. Non-professional football players are also at risk; in 2010, 17-year-old high school football player Nathan Styles became the youngest person to be posthumously diagnosed with CTE, followed closely by 21-year-old University of Pennsylvania junior lineman Owen Thomas. Hundreds of active and retired professional athletes have directed that their brains be donated to CTE research upon their deaths. More than one of these players died by their own hands, including Thomas, Atlanta Falcons safety Ray Easterling, Chicago Bears defensive back Dave Duerson, and, most recently, retired NFL linebacker Junior Seau. In February 2011, Duerson shot himself in the chest, shortly after he texted loved ones that he wanted his brain donated to CTE research. In May 2012, Seau, too, shot himself in the chest, but left no note. His family decided to donate his brain to CTE research in order “to help other individuals down the road.” Earlier this month, the pathology report revealed that Seau had indeed suffered from CTE. Many other athletes, both retired and active, have prospectively directed that their brains be donated to CTE research upon their death.[2] Some 4,000 former NFL players have reportedly joined numerous lawsuits against the NFL for failure to protect players from concussions. Seau’s family, following similar action by Duerson’s estate, recently filed a wrongful death suit against both the NFL and the maker of Seau’s helmet.

The fact that CTE cannot currently be diagnosed until after death makes predicting and managing symptoms and, hence, studying treatments for and preventions of CTE, extremely difficult. Earlier this month, retired NFL quarterback Bernie Kosar, who sustained numerous concussions during his twelve-year professional career — and was friends with both Duerson and Seau — revealed both that he, too, has suffered from various debilitating symptoms consistent with CTE (but also, importantly, with any number of other conditions) and also that he believes that many of these symptoms have been alleviated by experimental (and proprietary) treatment provided by a Florida physician involving IV therapies and supplements designed to improve blood flow to the brain. If we could diagnose CTE in living individuals, then they could use that information to make decisions about how to live their lives going forward (e.g., early retirement from contact sports to prevent further damage), and researchers could learn more about who is most at risk for CTE and whether there are treatments, such as the one Kosar attests to, that might (or might not) prevent or ameliorate it.

Last week, UCLA researchers reported that they may have discovered just such a method of in vivo diagnosis of CTE. In their very small study, five research participants — all retired NFL players — were recruited “through organizational contacts” “because of a history of cognitive or mood symptoms” consistent with mild cognitive impairment (MCI).[3] Participants were injected with a novel positron emission tomography (PET) imaging agent that, the investigators believe, uniquely binds to tau. All five participants revealed “significantly higher” concentrations of the agent compared to controls in several brain regions. If the agent really does bind to tau, and if the distributions of tau observed in these participants’ PET scans really are consistent with the distributions of tau seen in the brains of those who have been posthumously-diagnosed CTE, then these participants may also have CTE.[4]

That is, of course, a lot of “ifs.” The well-known pseudomymous neuroscience blogger Neurocritic[5] recently asked me about the ethics of this study. He then followed up with his own posts laying out his concerns about both the ethics and the science of the study. Neurocritic has two primary concerns about the ethics. First, what are the ethics of telling a research participant that they may be showing signs of CTE based on preliminary findings that have not been replicated by other researchers, much less endorsed by any regulatory or professional bodies? Second, what are the ethics of publishing research results that very likely make participants identifiable? I’ll take these questions in order. Read More

Playing Sports Now a Civil Right

Art Caplan and his colleagues at the NYU Sports & Society Program have an interesting new essay up at Forbes:

Obama Administration: Playing Sports Is Now A Civil Right

The United States Department of Education has released aguidance requiring schools to make “reasonable modifications” to include students with disabilities in mainstream athletics programs or provide parallel options. That may sound like just another boring piece of paper that oozes off the desk of a government bureaucrat on any given day. But this is very different. The guidance proclaims that access to interscholastic, intramural, and intercollegiate athletics is a civil right.
Asserting access to athletic programs as a civil right is a big step forward for our education system and, of course, for people with disabilities. It highlights the important role that sports can play in the development of young people as functioning and contributing members of society. It also serves to help decrease the stigma too often associated with physical, mental, and emotional disabilities.

The limitation of a guidance is that it clarifies existing laws, but doesn’t create new ones. So, although it’s not a “toothless tiger,” it’s questionable as to whether anyone will be able to file a lawsuit based on it. And there are sure to be lawsuits because it’s inevitable that the guidance is going to create a host of issues about classification and definition such as: What is a disability? What is a “reasonable modification”? What is a reasonable “accommodation”? What will get modified: the sport, the arena, or the people eligible to play?

Keep reading…

The Society for Philosophy and Disability Is Official

By Nir Eyal

With an approved constitution, elected officials and now, recognition from all three divisions of the American Philosophical Association (APA), a new society is finally official. The Society for Philosophy and Disability, or SPD, will hold its first two sessions at the February 2013 Central APA meeting in New Orleans.

SPD is a non-profit educational organization dedicated to furthering research and teaching on philosophical issues related to disability and to promoting inclusiveness and support for people with disabilities in philosophical education and in the profession of philosophy. SPD aims to provide a forum for philosophical discussion of disability by arranging meetings, maintaining an online presence, and organizing academic projects.

Adam Cureton, President of the Society, invites everyone to join SPD, which they can do on the Society website. You are also welcome to invite colleagues or students who are interested in philosophy and disability to join us.