Category Archives: Disability

Sex, People with Disabilities, Prostitution, and Universal Health Care: Reflections on “The Sessions”

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[Cross-Posted at PrawsBlawg)

One of my favorite initiatives at Harvard Law School, where I teach, is that faculty members get to offer an optional 10-12 student not-for-credit “First-Year Reading Groups” on a topic of interest to them that is related to law in some way but not too law-class like. I’ve taught a reading group on bioethics and law through film that pairs films with papers/topics in bioethics (e.g., A.I. with readings on personhood, Minority Report and neuroscience and law and predicting criminality, Dirty Pretty Things and organ sale and exploitation, The Constant Gardener with clinical trials in the developing world, Eternal Sunshine for the Spotless Mind and therapeutic forgetting and “cosmetic neurology” and many others…)

Next year I will add The Sessions, a film I found very enjoyable starring John Hawkes, Helen Hunt, and William H. Macy from last year that I also found very bioethically interesting. The film is based on a true story and follows Mark O’Brien, a poet who lives in an Iron Lung due to complications from Polio. After unsuccessfully proposing to his caretaker, and believing the end of his life may be nearing, he decides he wants to lose his virginity. He hires Cheryl Cohen-Greene, a professional sex surrogate, who will offer him a maximum of six sessions but makes clear to him this is therapy not romance. I will stop there to avoid ruining the film, but on to the bioethics…

There are fairly clear issues raised about commodification, exploitation, the difference between sex therapy and prostitution, that I have written about in various forms in various places. These are certainly interesting issues but familiar enough. What the film newly prompted me to think about, though, is actually universal health care. In particular, as I have written about indirectly in a couple of papers, what would some of the most prominent theories explaining why we need universal health care say about whether the state should pay for sex therapy (or perhaps even prostitution) for people with disabilities like Mark who find themselves otherwise unable to have sex?

For example, in his wonderful book Just Health, my colleague Norman Daniels, coming from a more Rawlsian tradition (i.e., a liberal tradition focused on promoting liberty and distributive justice through giving priority to the worst-off), grounds the state’s role in promoting health in the obligation, as a matter of political justice, to ensure access to the “normal opportunity range” to pursue the “array of life plans reasonable persons are likely to develop for themselves.” Although Daniels’ focus is on health care, it seems to me that sexual satisfaction is also part of that normal opportunity range and part of a life plan most of us would like to pursue.

Similarly, Martha Nussbaum in her great book Frontiers of Justice, writing from a more aretaic (i.e., Aristotelian, focusing on character and virtue) perspective, has argued that the state’s role is to enable human flourishing by raising people above the threshold level on a number of “capabilities.” Among these she mentions “bodily integrity,” as including “having opportunities for sexual satisfaction and for choice in matters of reproduction.” I have previously discussed how this kind of approach may justify funding reproductive technologies, but it seems to me as though it also fairly directly establishes an argument for funding Mark’s attempts to lose his virginity.

Now this is meant to be provocative, of course. And for some this is no doubt a reductio ad absurdum against universal health care. Fair enough. But for those who believe there is a moral case for funding universal health care, does the argument also lead to funding these kinds of sex therapies? Health is important, of course, but let’s be frank (and my parents can stop reading at this point) so is sexual satisfaction, and both seem to me essential parts of the normal opportunity range and/or human flourishing.

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Kudos to This American Life

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A few weeks ago, I blogged about a recent episode of This American Life, “Dr. Gilmer and Mr. Hyde,” about the quest of one Dr. Gilmer (Benjamin) to understand why another, beloved Dr. Gilmer (Vince), had brutally murdered his own father after hearing voices that compelled him to do so. The episode ends (spoiler alert) with the revelation that Vince suffers from Huntington’s, a rare, neurodegenerative disease that causes progressive physicial, cognitive, and psychological deterioration.

Listeners, it seemed to me, could naturally conclude from the episode that it was Vince’s Huntington’s that had caused him to murder his father. That might or might not be true in this particular case. Huntington’s can cause behavioral and mood changes, including irritability, aggression and belligerence. It can also cause (less often) psychosis. But even if Huntington’s caused Vince to murder his father, or somehow contributed to the murder, the extreme violence that Vince displayed — strangling his father, then sawing off his father’s fingertips to preclude identification — is in no way typical of the Huntington’s population as a whole. And so what most troubled me about the episode was its failure to note just how rare this kind of extreme violence is among those with Huntington’s, just as it is very rare among human beings generally. And so I wrote to TAL, requesting a clarification.

I’m happy to report that the TAL producer for the episode, Sarah Koenig — who had not intended to suggest any causal link between Vince’s murder of his father and his Huntington’s, much less between murder and Huntington’s more generally — has issued a clarification on the show’s blog, and promises to make a similar clarification in the episode itself, should they ever re-air it. Kudos to TAL, and many thanks to Sarah for being incredibly gracious in our exchanges.

One clarification deserves another. In my earlier blog post, I also worried that some listeners might  conclude that Vince’s father was similarly driven to commit horrific acts of sexual abuse on Vince and his sister because he, too, was (presumably) suffering from Huntington’s (an autosomal dominant genetic disease). Although I think that a listener who didn’t know better could reasonably conclude that Huntington’s causes people to become sexual predators almost as easily as they could conclude from the episode that Huntington’s causes people to become murderers, nothing in the episode suggests that Sarah, Benjamin Gilmer, or anyone else at TAL believe that Huntington’s causes sexual abuse, or that they intended for listeners to reach that conclusion. I regret anything in my earlier post that suggested otherwise.

Again, I’m very grateful to Sarah and everyone else at TAL for hearing me (and other listeners) out and for agreeing to make the clarification — and just in time for HD Awareness Month!

Discrimination Against Obese Patients

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Following up on a blog post I did here several months ago, take a look at – and a listen to – some additional commentary I have in this week’s New England Journal of Medicine.

The gist?  The law prohibits many, but not all, grounds for discrimination against potential patients.  Race, religion, sex, and disability are among the most uniformly protected categories, whereas less than half of states prohibit health care discrimination based on sexual orientation or gender identity, for example. Moreover, the rejection of patients because they smoke, play contact sports, or engage in other risky behavior is legally within the realm of physician discretion, as is discrimination based on other characteristics not protected by law.

So what about obesity discrimination by healthcare providers?  Perhaps one of the last comparatively socially acceptable bases for discrimination, weight has not traditionally been treated as a protected category under civil rights laws. But one possible strategy is to consider the scope of prohibitions against disability discrimination. This is actually a pretty unsettled area of law – but the bottom line, to the extent there is one, is that rejection of an overweight or obese patient who is neither impaired to the extent of being disabled nor regarded as disabled would be legally permissible under the Americans with Disabilities Act.  Rejection of an obese patient who is disabled could also be permissible, so long as the disability was not the reason for the rejection.  The only problem would come up if a disabled obese patient were to be rejected on that basis, and could prove that to be the case.  So this may not be the most helpful approach to address obesity discrimination in the healthcare context, and in my opinion, reliance on simple medical professionalism and the commitment to caring for those in need has much more to offer.                          

This American Life and Stigma

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Update: TAL has made a clarification. Please see this post for more.

Let me begin by saying how much I absolutely adore This American Life. I listen to it religiously. I particularly had been looking forward to the most recent pocast episode of TAL: Dr. Gilmer and Mr. Hyde. As the episode’s blurb teases, “Dr. Gilmer and Mr. Hyde” concerns a doctor — Benjamin Gilmer — who takes over the rural South Carolina practice of Vince Gilmer (no relation). Vince is no longer available to see patients because he is serving a prison sentence for killing his father. As Benjamin gets to know Vince’s — and now his — patients, he forms a picture of Vince that’s at odds with his status as a convicted father murderer. How could this doctor who was so devoted to his patients have so brutally murdered his own father?

This episode is right up my alley. True crime? Check. Forensic psychology? Check. The intersection of law and medicine? Yes, please. So when I awoke yesterday morning at 5 am and couldn’t go back to sleep, I eagerly cued up the podcast. The episode recounts, in TAL’s  typically-riveting fashion, the story of Benjamin’s search for the truth behind Vince’s murder of his father. I enjoyed every minute of the episode until the last five minutes or so, when I became troubled by one critical omission.

Spoilers  follow after the jump; listen to the episode first. Continue reading →

Introducing our Online Abortion and Reproductive Technology Symposium

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[Editor's Note: This is Glenn Cohen guest posting on behalf of Kim Mutcherson, what follows below is her post. I will be posting on behalf of several symposium contributors over the next few days.]

On Friday, April 5, a group of almost 30 (mostly legal) scholars gathered at Rutgers Law-Camden to have difficult conversations about abortion and assisted reproduction. The event, sponsored by Rutgers Law and the Law School Initiative of the Center for Reproductive Rights (http://reproductiverights.org/en/our-work/law-school-initiative) sought to initiate discussion about the seeming gulf between those working on issues related to abortion and those working on assisted reproduction and assisted reproductive technology (ART).  Friday’s conversation was the first of at least three planned events with the other two to be sponsored at some future point by the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard Law School and the Program for the Study of Reproductive Justice in the Information Society Project at Yale Law School. If the nature of the conversation at this kick-off event is a harbinger of things to come, I am anticipating that top-notch and cutting edge scholarship related to reproductive rights and reproductive justice will emerge from workshop participants.

While it might seem intuitive that scholars of reproduction would talk often, much of the work in this arena exists in silos. Those writing about abortion have plenty of work to do in keeping up with the flurry of state laws seeking to destroy what remains of Roe v. Wade in a post-Planned Parenthood v. Casey world. And those working in the world of assisted reproduction have to keep abreast of emerging science that is always light years ahead of what the law has done or seems capable of doing. As a consequence, opportunities to study the intertwining and divergence between the right to end a pregnancy and a right to create one are sparse.

And so, in the year that we commemorate the 40th anniversary of Roe, we engaged in a respectful, honest, and richly complex dialogue about the appropriate paradigm for understanding the right to abortion and the right to use assisted reproduction—liberty, equality or some new paradigm that we have yet to fully embrace or articulate.

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PERINATAL HOSPICE: NEW THEORIES ABOUT WHAT CHOICE MEANS

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Guest Blogger: Allison M. Whelan*

So much of the political and legal debate about reproductive choice centers on abortion.  In doing so, these debates obscure so many other reproductive choices women must make.  And the choices are not easy—and the stakes are even greater in an era where any prenatal missteps might lead to aggressive state action, including criminal sanctions.  There are thorny situations that confront medicine and ethics.  For example, how should we think about families that choose to carry terminal fetuses to delivery only for the fetus to expire shortly after birth?  Should such pregnancies be terminated early given that doctors and even the intended parents know the fetus will not survive?  Where does the law stand on such issues?  What is morally permissible?

Thousands of women and families face lethal prenatal diagnoses and perinatal loss every year. In 2006, there were 25,972 reported fetal deaths at twenty weeks or later.  An additional 19,041 live-born infants died at less than twenty-eight days.  Birth defects such as congenital malformations and chromosomal abnormalities are the leading cause of fetal-infant deaths. Lethal anomalies (i.e., Trisomy 13; anencephaly; hypoplastic left heart syndrome) are a subset of birth defects characterized by a radically shortened lifespan. In 2005, there were 6,925 fetal and infant deaths attributable to lethal anomalies in the U.S.

Advancements in prenatal diagnosis coinciding with improved access to legal abortions create medical options for patients, but also spur challenging ethical questions.  For example, therapeutic abortions have become the “management of choice” for many women whose fetuses experience a “lethal condition”.  However, termination may not be the preferred choice for all women and families.  The concept of perinatal hospice fills this void and offers women valid options after a terminal fetal diagnosis. Although the concept is still relatively novel and unknown in much of the health profession and lay population, the development of perinatal hospice programs is growing.

Perinatal hospice is worth taking seriously.  For example, perinatal hospice programs are multidisciplinary and their services begin at the time of diagnosis (rather than death), in recognition of “anticipatory grief,” a term describing the grieving process that begins prior to death when a death is probable or imminent. Those who have used these services say that perinatal hospice provides a supportive environment for parents to grieve and appreciate any time they have with their infant.  Further, they say It affirms their role as parents and acknowledges that their loss is “as real” as the loss of any other loved one.  Maybe perinatal hospice is a safe place where parents can “be parents.”  It’s worth thinking about.

*Allison Whelan is a graduate student, University of Minnesota School of Law and Center for Bioethics

Fox on “The Flawed Logic of Prenatal Discrimination”

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Dov Fox has an interesting new piece up at HuffPo examining the constitutionality of the abortion restrictions just enacted  in North Dakota:

As the Supreme Court heard oral arguments this week in the same-sex marriage cases, North Dakota enacted three of the most restrictive abortion laws in the country. Two of them are unlike any ever considered by U.S. courts.

One bans abortion wholesale after a fetal heartbeat is “detectable” (as early as six weeks into a pregnancy), unless termination would save the woman’s life. The other law forbids any abortion that’s sought on the basis of fetal sex or genetic anomaly, even fatal ones.

Both laws should be struck down as unconstitutional. But the selective abortion ban presents new legal questions for supporters of reproductive rights. Indeed, the Supreme Court in Roe v. Wade declined to insist that a woman “is entitled to terminate her pregnancy . . . for whatever reason she alone chooses.”

 Keep reading…

Fox on Prenatal Genetic Testing

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A front-page story in today’s Sunday Boston Globe quotes Bill of Health blogger Dov Fox on whether the routine use of new prenatal blood testing could “‘bring a tendency to exclude rather than accommodate people whose abilities fail to meet [certain] demands’” of modern society or “‘exert[] social pressure on parents to terminate pregnancy for fear of criticism or reproach from people who regard the[ir] choice [to have a] child with a disability [] as negligent, or irresponsible.’”
If these non-invasive tests (which look at potentially unlimited amounts of fetal DNA) were able to provide genetic information for conditions beyond just sex and health, might we come to think in similar ways about children of “merely” average looks or normal height or ordinary intelligence? Dov explored this question and others in a talk that he gave as a 2006 summer fellow at the Petrie-Flom Center. His article is called Silver Spoons and Golden Genes.

The U.S. Should Cover the Cost of IVF (for Gays and Lesbians Too)

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by Dov Fox

Glenn Cohen and I make the case in this morning’s Huffington Post:

This week the United Kingdom joined the ranks of countries like Canada, Israel, and Sweden that provide in vitro fertilization (IVF) treatment to citizens under a certain age (42 in the U.K.) who can’t have children without it. That includes gays and lesbians. When it comes to helping people form the families they long for, the United States is woefully behind. The U.S. has among the lowest rates of IVF usage of any developed country in the world, owing in part to boasting the highest cost for the procedure, on average $100,000 for each successful pregnancy.

Among the handful of states that require insurers to cover IVF, many carve out exclusions for same-sex couples and people who aren’t married. These singles, gays, and lesbians are sometimes called “dysfertile” as opposed to “infertile” to emphasize their social (rather than just biological) obstacles to reproduction. The U.S. should expand IVF coverage for the infertile, and include the dysfertile too.

The U.S. Supreme Court has held that the inability to reproduce qualifies as a health-impairing disability under the Americans with Disabilities Act. The commitment to universal health care that we renewed in President Obama’s health reform act invites us to understand the infertile and dysfertile alike as needing medicine to restore a capacity—for “[r]eproduction and the sexual dynamics surrounding it”—that is, in the words of the Supreme Court, “central to the life process itself.”

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Family, Privacy, Secrets, & The Law

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The Family, Privacy, Secrets, & The Law Roundtable (March 7-8. 2013) was a great success.  Kudos to the brilliant presenters and commentators who came together for this important, groundbreaking session, including Lori Andrews, Glenn Cohen, June Carbone, Laura Rosenbury, Camille Gear Rich, Martha Field, Deborah Epstein, Martha Ertman, Gaia Bernstein, Taunya Banks, Naomi Cahn, Michael Pinard, Karen Czapanskiy, and Eleanor Brown.  Thanks to all who attended and contributed to this excellent meeting.    Coverage can be found here and here.

Caplan on “$10,000 to Abort?”

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Art Caplan has a new column up discussing the surrogacy agreement gone awry (noted by Judy Daar below) in which a surrogate was offered $10K to abort the fetus upon discovery of abnormalities.  Take a look.

We’ve also had other discussions of this issue at Bill of Health, from Dov Fox’s recent post on abortion of disabled fetuses to Glenn Cohen’s post on Mitt Romney’s son’s abortion contract.

Family, Privacy, Secrets & The Law

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Join us for an important meeting:

Roundtable: Family, Privacy, Secrets & the Law  March 7-8, 2013

March 7-8, 2013
University of Maryland
Francis King Carey School of Law
500 West Baltimore Street
Baltimore, MD 21201

March 7, 5 p.m. - Book Reading and signing by Jonathan Odell, author of The Healing

March 8, 9 a.m. – 4 p.m. – Roundtable discussions

Eventbrite - Family, Privacy, Secrets & The Law Roundtable

Family, Privacy, Secrets & the Law roundtable engages the intersections of medicine, criminal law, family law, and constitutional law. The conference faculty will chart contemporary issues that span genetic privacy, disclosure of parental identity in assisted reproduction cases and DNA conscription to domestic violence and child sexual abuse.

There are times in which the law protects secrets, such as between a lawyer and client, doctor and patient, or clergy and congregant.  Yet, there are times when the law demands that secret-keepers reveal their confidences such as the increasing demand on doctors to disclose confidential medical information on pregnant women to law enforcement. How should we understand the contours and boundaries of these dynamics within the law?  On one hand, law tends to address secrets through the lens of legal duties to protect the vulnerable via its regulations governing abuse and neglect. On the other hand, this set of laws captures only a small percentage of secrets held by family members and other trusted “secret keepers” (doctors, clergy, extended family, neighbors) who, for a variety of reasons elect not to inform the state.

This roundtable interrogates states’ obligations to protect the vulnerable and at what cost. It considers the ways in which the law promises/owes protection and the success, failure or harms it brings about when endeavoring to intervene and offer protection. Against that backdrop, the law also has the obligation to honor individual and family autonomy and privacy.

Schedule

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The ADA and Declining Down Syndrome Birthrates

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[Posted on behalf of Dov Fox]

Having a child is hard work. It can be especially taxing—“physically, emotionally, and of course, financi[]ally, to bring a child with [disabilities] . . . into the world and raise it,” as commentators have noted in response to an earlier version of this piece that Chris Griffin and I wrote yesterday on Huffington Post. So it is not difficult for many of us to sympathize with the genetic parents who, CNN reported later in the day, offered their surrogate $10,000 to have an abortion when they learned “the baby would need several heart surgeries” and “ha[ve] only about a 25% chance of having a ‘normal life.’”

At the same time, doctors and authors justly celebrate the increasing willingness of those who decide that, for them, it makes sense to bring a pregnancy to term after getting a positive test for a condition like Down syndrome. These advocates explain the perceived shift in social norms by noting that the landmark Americans with Disabilities Act (ADA) provides legal protections to combat employment discrimination and enhance access to public accommodations. What they fail to appreciate is that these protections have not always brought with them the anticipated acceptance of having a child with disabilities.

A study we published in 2009 reveals a 25 percent decline in Down syndrome birthrates nationwide after the first President Bush signed the ADA into law. Controlling for variables from maternal age and marital status to prenatal testing and access to abortion, we found that about 15 fewer children per 100,000 were born with Down syndrome after the law was passed. So here’s the puzzle: Why would fewer children be brought into the world just as they are being afforded greater opportunities in life?

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

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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

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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

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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. Continue reading →

Playing Sports Now a Civil Right

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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

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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.