HHS’ Proposed Anti-Discrimination Regulations: Protective But Not Protective Enough

By Elizabeth Guo

Last week, the Department of Health and Human Services (HHS) Office of Civil Rights (OCR) released a proposed rule implementing section 1557 of the Affordable Care Act (ACA). Section 1557 applies the Rehabilitation Act of 1973 to the ACA so that a covered entity cannot discriminate against an individual on the basis of a disability in any health program or activity. The proposed rule clarified how OCR intended to enforce and interpret section 1557’s nondiscrimination provision.

As Timothy Jost and other commentators have noted, the government’s proposed interpretation of section 1557 significantly expands the number of health entities that need to meet the Rehabilitation Act’s nondiscrimination requirements. The regulation proposes to encompass all entities that operate a health program or activity, any part of which receives federal financial assistance. The regulation then broadly interprets “federal financial assistance” to include “subsidies and contracts of insurance.” Thus, an insurer receiving premium tax credits or cost-sharing reduction payments through participating in a health insurance Marketplace would need to ensure that all its health plans meet the Rehabilitation Act’s nondiscrimination requirements, regardless of whether the plans are sold through the Marketplace, outside the Marketplace, or through an employee benefit plan. This broad interpretation means that the Rehabilitation Act’s nondiscrimination provisions will now apply to a number of previously excluded plans.

Expanding the number of plans needing to meet section 1557’s nondiscrimination requirements will provide greater protection to more individuals with disabilities. In the United States, the Rehabilitation Act and the Americans with Disabilities Act (ADA) prohibit discrimination against individuals with disabilities. Both acts protect disabled individuals, but courts have consistently interpreted only the Rehabilitation Act as prohibiting insurers from designing their health plans to discriminate against individuals with disabilities. On the other hand, courts have held that the ADA provides a safe harbor for insurers when designing their benefit plans. Thus, some insurers under the ADA may be able to exclude all drugs treating HIV/AIDS from their formulary or place all drugs treating HIV/AIDS on the highest cost-sharing tier, benefit designs that the Rehabilitation Act would likely prohibit. See also Kelsey Berry’s post on this topic.  Continue reading

What Should the Future Look Like for Brain-Based Pain Imaging in the Law? Three Eminent Scholars Weigh In

By Amanda C. Pustilnik, Professor of Law, University of Maryland Carey School of Law; Faculty Member, Center for Law, Brain & Behavior, Massachusetts General Hospital

What should the future look like for brain-based pain measurement in the law?  This is the question tackled by our concluding three contributors:  Diane Hoffmann, Henry (“Hank”) T. Greely, and Frank Pasquale. Professors Hoffmann and Greely are among the founders of the fields of health law and law & biosciences. Both discuss parallels to the development of DNA evidence in court and the need for similar standards, practices, and ethical frameworks in the brain imaging area.  Professor Pasquale is an innovative younger scholar who brings great theoretical depth, as well as technological savvy, to these fields.  Their perspectives on the use of brain imaging in legal settings, particularly for pain measurement, illuminate different facets of this issue.

This post describes their provocative contributions – which stake out different visions but also reinforce each other.  The post also highlights the forthcoming conference-based book with Oxford University Press and introduces future directions for the use of the brain imaging of pain – in areas as diverse as the law of torture, the death penalty, drug policy, criminal law, and animal rights and suffering.  Please read on!

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Neuroimaging as Evidence of Pain: It’s Time to Prepare

By Henry T. Greely, Edelman Johnson Professor of Law, Stanford Law School; Professor (by courtesy) of Genetics, Stanford Medical School; Director, Program in Neuroscience & Society, Stanford University

The recent meeting at Harvard on neuroimaging, pain, and the law demonstrated powerfully that the offering of neuroimaging as evidence of pain, in court and in administrative hearings, is growing closer. The science for identifying a likely pattern of neuroimaging results strongly associated with the subjective sensation of pain keeps improving. Two companies (and here) recently were founded to provide electro-encephalography (EEG) evidence of the existence of pain. And at least one neuroscientist has been providing expert testimony that a particular neuroimaging signal detected using functional magnetic resonance imaging (fMRI) is useful evidence of the existence of pain, as discussed recently in Nature.

If nothing more is done, neuroimaging evidence of pain will be offered, accepted, rejected, relied upon, and discounted in the normal, chaotic course of the law’s evolution. A “good” result, permitting appropriate use of some valid neuroimaging evidence and rejecting inappropriate use of other such evidence, might come about. Or it might not.

We can do better than this existing non-system. And the time to start planning a better approach is now. (Read on for more on how)

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Of Algorithms, Algometry, and Others: Pain Measurement & The Quantification of Distrust

By Frank Pasquale, Professor of Law, University of Maryland Carey School of Law

Many thanks to Amanda for the opportunity to post as a guest in this symposium. I was thinking more about neuroethics half a decade ago, and my scholarly agenda has, since then, focused mainly on algorithms, automation, and health IT. But there is an important common thread: The unintended consequences of technology. With that in mind, I want to discuss a context where the measurement of pain (algometry?) might be further algorithmatized or systematized, and if so, who will be helped, who will be harmed, and what individual and social phenomena we may miss as we focus on new and compelling pictures.

Some hope that better pain measurement will make legal disability or damages determinations more scientific. Identifying a brain-based correlate for pain that otherwise lacks a clearly medically-determinable cause might help deserving claimants win recognition for their suffering as disabling. But the history of “rationalizing” disability and welfare determinations is not encouraging. Such steps have often been used to exclude individuals from entitlements, on flimsy grounds of widespread shirking. In other words, a push toward measurement is more often a cover for putting a suspect class through additional hurdles than it is toward finding and helping those viewed as deserving.

Of Disability, Malingering, and Interpersonal Comparisons of Disutility (read on for more)

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An ELSI Program for Pain Research: A Call to Action

By Diane Hoffmann, Director, Law & Health Care Program; Professor of Law; University of Maryland School of Law

As someone who has been greatly concerned about and devoted much of my scholarship to legal obstacles to the treatment of pain, I applaud Professor Pustilnik for increasing attention to the role of neuroimaging in our efforts to understand our experience of pain and how the law does or does not adequately take into account such experience. Pustilnik has written eloquently about this issue in several published articles but her efforts to bring together scientists, medical experts, legal academics, and judges (see also here) deserves high praise as a method for illuminating what we know and do not know about pain and the brain and to what extent brain imaging can serve as a diagnostic tool or an external validator of pain experience.

In this post, I discuss how DNA testing serves as a precedent for how to develop responsible uses of new technologies in law, including, potentially, brain imaging for pain detection. The ethical, legal, and social implications (ELSI) of DNA research and testing were integral to developing national protocols and rules about DNA. Brain imaging of pain needs its own ELSI initiative, before zealous adoption outpaces both the technology and the thinking about the right guiding principles and limitations.

The idea of brain images serving as a “pain-o-meter” to prove or disprove pain in legal cases is clearly a premature use of this information and likely an over simplification of the mechanisms of pain expression. However, the potential for an objective diagnostic tool or indicator of the pain experience is something that lawyers representing clients in criminal, personal injury, workers comp or disability cases may find too attractive to resist and attempt to have admitted in the courtroom. This state of affairs brings to mind the ways in which lawyers have attempted to use genetic test results, initially obtained for medical purposes, in litigation.  (Read on for more about ELSI in DNA and several national pain initiatives that could adopt the Human Genome Project and DNA ELSI model).

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Emotion and Pain – Beyond “All in Your Head”

By David Seminowicz, Principal Investigator, Seminowicz Pain Imaging Lab, Department of Neural and Pain Sciences, University of Maryland

A potential difficulty, but also an opportunity, relating to using neuroimaging evidence in legal cases arises from the difficulty brain researchers have in separating emotional and physical pain. We know that pain and emotion are tightly linked. In fact, “emotion” is in the very definition of pain. The IASP definition of pain is: “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”  Yet, the legal system deals with “physical” versus “psychiatric” versus “emotional” pain in different ways.

Chronic pain is associated with anxiety, depression, and stress. These factors can exacerbate the pain, and pain can exacerbate them. Pain’s sensory and emotional components connect in a “feed-forward” cycle. It may not be possible to entirely separate the sensory and emotional components of pain, biologically or experientially. But it might be necessary for the purposes of legal cases, as important areas of law create sharp distinctions between physical and emotional, or body and mind.

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Some Optimism on Brains, Pain, & Law – Let’s See What We Can Achieve

By Martha Farah, Director, University of Pennsylvania Center for Neuroscience & Society

Neurolaw includes some fascinating issues that lack any practical legal significance – for example whether we should consider anyone responsible for anything they do, given that all behavior is physically caused by brain processes.  It also includes some legally important issues that lack intellectual juiciness – like regulatory issues surrounding neurotechnology.

Thank goodness there are also some issues that combine intellectual fascination with practical legal importance. The Petrie-Flom Center at Harvard Law School and the Center for Law, Brain & Behavior at Massachusetts General Hospital recently focused on just such an issue when they convened a meeting of neuroscientists and legal scholars on the brain imaging of pain.

Pain, I learned at this meeting, is at the heart of many legal proceedings. A major problem to be solved in these proceedings is the determination of whether someone is truly in pain. Chronic pain in particular may not have physically obvious causes. There may be clinical and circumstantial evidence of pain – like adhering to a medication regime, seeking surgeries or other interventional procedures, and avoiding pleasurable activities – but often the major evidence of pain is just what someone says that it is. However, the motivation exists to lie about pain – to sue for more money, to obtain disability benefits – and so an objective measure of pain, a “pain-o-meter,” would be helpful.

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Human Rights Tribunal Upholds France’s Policies on Ending Life Support for Permanently Unaware Patients

By Norman L. Cantor

France recently confronted its version of America’s 2005 Schiavo case (in which the Florida Supreme Court upheld a spouse’s determination to end life support to a permanently unconscious patient despite the patient’s parents’ objections). In 2014, France’s Conseil d’Etat ruled that artificial nutrition and hydration (ANH) could be withdrawn from a permanently vegetative patient based on oral statements that the patient had made, while competent, indicating unwillingness to be medically sustained in such a condition. The patient’s objecting parents then sought a declaration from the European Court of Human Rights (ECHR) that such termination of life support would violate the European Convention on Human Rights. On June 5, 2015, the ECHR rejected the objecting parents’ contention, finding that France’s approach met human rights standards both in the process and the criteria followed by medical personnel in deciding to end life support.   Lambert v. France, #46043/14 (ECHR 2015).

Vincent Lambert, then 32 years old, was grievously injured in a 2008 traffic accident. He suffered massive brain trauma and was hospitalized for the next 7 years at Reims University Hospital. His precise medical status was initially uncertain. In July 2011, a medical evaluation found him to be “minimally conscious plus.” Over the next year and a half, he underwent 87 speech therapy sessions which failed to establish any code of communication between Mr. Lambert and his surroundings. In early 2013, the attending physician, Dr. Kariger, initiated a process to review Mr. Lambert’s condition and to determine whether the ANH sustaining Mr. Lambert should be withdrawn.

The process that followed was extensive. During 2013, Dr. Kariger consulted with 6 physicians concerning the patient’s mental status and held 2 family meetings at which Mr. Lambert’s wife, Rachel, his parents, and 8 siblings were present. In January 2014, Dr. Kariger announced his determination to end artificial nutrition and reduce hydration. Dr. Kariger’s written report explained that Mr. Lambert had become permanently unaware of his environment and, according to accounts of Mr. Lambert’s prior oral expressions, he would not wish to be medically sustained in such a debilitated condition. Five of the six medical consultants agreed, as did the patient’s wife and 6 of his 8 siblings.

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The Response to Brittany Maynard

By Lauren Taylor

29-year old Brittany Maynard has captured national headlines this week by publicly announcing her intention to end her own life on November 1st. She did so in an effort to raise funds for and awareness of the non-profit Compassion and Choices.

Maynard was diagnosed earlier this year with an aggressive brain cancer and has moved to Oregon for access to its death with dignity laws. Those laws have allowed her to be prescribed a fatal dose of medication by a physician to be taken at the time and place of her choosing. Maynard sees the prescription as a means of avoiding a potentially long, painful and de-humanizing decline in her health.

In light of Maynard’s case, virtually every major media outlet has featured a bit of medical ethics this week. Maynard’s own voice first appeared in People Magazine, announcing her intention to end her own life.  Therein, Maynard is clear that she does not consider herself to be planning for suicide.  Continue reading

Exploring the Brain in Pain: An Applied Neuroscience & Law Initiative

Amanda C. Pustilnik

I am excited to join the Petrie-Flom Center as the first Senior Fellow in Law & Applied Neuroscience. This fellowship is the product of an innovative partnership between the Petrie-Flom Center and the Center for Law, Brain and Behavior (CLBB) at Massachusetts General Hospital. This partnership aims to translate developments in neuroscience into legal applications, remaining sensitive to the normative dimensions of many – if not all – legal questions. The field of law & neuroscience is large and growing, addressing questions that intersect with nearly every area of law and a huge range of social and human concerns. CLBB is bringing together scientists, bioethicists, and legal scholars to look at questions ranging from criminal responsibility and addiction, to mind-reading and brain-based lie detection, to how the brain’s changes over our lifecourse affect our capacities to make decisions.

In the first year of this joint venture, we will be focusing on a set of issues with potentially huge implications for the law: The problem of pain. Pain is pervasive in law, from tort to torture, from ERISA to expert evidence. Pain and suffering damages in tort add up to billions of dollars per year; disability benefits, often awarded to people who suffer or claim to have chronic pain, amount to over one hundred billion annually. Yet legal doctrines and decision-makers often understand pain poorly, relying on concepts that are out of date and that can cast suspicion on pain sufferers as having a problem that is “all in their heads.”

Now, brain imaging technologies are allowing scientists to see the brain in pain – and to reconceive of many types of pain as diseases of the central nervous system. Brain imaging shows that, in many cases, the problem is literally in sufferers’ heads: Long-term pain changes the structure and function of the brain, perpetuating non-adaptive pain and interfering with cognitive and emotional function. Continue reading

The U.S. Supreme Court vs. The American Psychological Association

by Dov Fox

The U.S. Supreme Court has not in recent years held the views of the American Psychological Association (APA) in so high regard as it did this week.

In 2012, the Court set aside the APA’s arguments for why due process requires the exclusion of eyewitness testimony obtained under suggestive circumstances that rendered it especially likely to be unreliable.

And in 2011, when the Court struck down on free speech grounds a state regulation on violent video games, it gave short shrift to the APA’s warnings about those games’ connection to violent behavior in young boys.

But in its recent death penalty decision, Florida v. Hall, the Court relied heavily on important APA insights in declaring it unconstitutional for states to set an IQ cutoff to determine whether a prisoner is eligible to receive capital punishment. Continue reading

Admissions and Mental Health

By Nathaniel Counts

In our legal system, colleges may not make admissions decisions in order to ameliorate historical (or presumably other) inequalities, but may make decisions that take into account the particular situation of the applicant or that strive to create a diverse student body.  Justice Powell rejected the former two goals in Part IV of his Bakke opinion, which went uncontradicted in the Grutter opinion that followed it and, most recently, the Fisher opinion almost exclusively focused on the diversity justification.  Whether or not it appears in court opinions however, the issue of transformative justice is very much at stake – colleges, as the gatekeeper to many of the high honors and offices of our society, can control the distribution of a set of goods to the rising generation and decide how equally they are distributed among certain groups.  Here we will imagine that transformative justice is indeed the goal of affirmative action.

Colleges have two tools by which they can currently select among students based on disadvantage (historical or otherwise).  First, there is the demographic and socioeconomic information disclosed in the application.  Although these questions are optional, for those students who answer the questions, schools may use these answers as signals for disadvantage and take this into account.  Second, there is the essay questions, which frequently ask about an instance in which the applicant overcame adversity.  Here the applicant can demonstrate the degree of disadvantage experienced or explain some more nuanced disadvantage not revealed in the first part.

These two tools are far from perfect, but let us take our imagining further and envision a world in which colleges could accurately determine disadvantage.  If it decides to take on the latter, mental health may pose an insurmountable problem – individuals with intellectual disabilities may not be able to thrive in the setting offered by the institutions that select them.

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A Case Against the “Noncompliant” Patient

By Deborah Cho

In recent years, providers have attempted to shift how health care is delivered so as to include the patient in the decision-making process.  This concept of shared decision-making was most memorably relayed to me in medical school through a critical lesson during which we were instructed to replace the word “noncompliant” with “non-adherent” when describing patients who were unwilling or unable to stick with treatment regimens.    Noncompliance painted a picture of a paternalistic provider mandating the rules of play, while the patient cowered below as a disobedient subordinate.  It also implied that the patient did something wrong by breaking the rules and that the actions of the patient ought to be modified to fit the rules, rather than the other way around.  On the other hand, non-adherence signified that the patient was a contributing partner in the development of the treatment plan and, further, that he may be justified for not abiding by the terms of his plan.

There were two overarching reasons for the shift to the shared decision-making model: first, that this would produce better overall clinical results and second, that this view shows more respect for patient autonomy.  Providers were learning and accepting that treatment plans prescribed within their vacuums could fail to be affordable, intelligible, or even realistic given a patient’s life circumstances.

So how does this relate to law students and lawyers?

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TOMORROW: Evaluating the Revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

Evaluating the Revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

Tuesday, March 11, 2014, 12:00pm

Wasserstein Hall 3018, Harvard Law School, 1585 Massachusetts Ave.

The DSM is the reference used by clinicians, researchers, and insurers to diagnose and classify mental disorders, with the intent to provide specific, objective criteria by which to assess symptoms and determine whether to pay for treatment.  The American Psychiatric Association released the manual’s fifth edition in May 2013, nearly twenty years after the fourth edition, to substantial public and professional criticism.  Please join us for a discussion of the new revisions and their implications for patients, medical practice, research, and the law.


  • Steven E. Hyman, Director of the Stanley Center for Psychiatric Research at the Broad Institute and Harvard University Distinguished Service Professor of Stem Cell and Regenerative Biology
  • Anne Becker, Maude and Lillian Presley Professor of Global Health and Medicine, Harvard Medical School
  • Nita Farahany, Professor of Law, Professor of Genome Sciences & Policy, and Professor of Philosophy at Duke University
  • Moderator: I. Glenn Cohen, Professor of Law, Harvard Law School; Faculty Co-Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics

This event is free and open to the public. Lunch will be provided. For questions, contact petrie-flom@law.harvard.edu or 617-496-4662.

This event is supported by the Oswald DeN. Cammann Fund.

3/11: Evaluating the Revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

Evaluating the Revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

Tuesday, March 11, 2014, 12:00pm

Wasserstein Hall 3018, Harvard Law School, 1585 Massachusetts Ave.

The DSM is the reference used by clinicians, researchers, and insurers to diagnose and classify mental disorders, with the intent to provide specific, objective criteria by which to assess symptoms and determine whether to pay for treatment.  The American Psychiatric Association released the manual’s fifth edition in May 2013, nearly twenty years after the fourth edition, to substantial public and professional criticism.  Please join us for a discussion of the new revisions and their implications for patients, medical practice, research, and the law.


  • Steven E. Hyman, Director of the Stanley Center for Psychiatric Research at the Broad Institute and Harvard University Distinguished Service Professor of Stem Cell and Regenerative Biology
  • Anne Becker, Maude and Lillian Presley Professor of Global Health and Medicine, Harvard Medical School
  • Nita Farahany, Professor of Law, Professor of Genome Sciences & Policy, and Professor of Philosophy at Duke University
  • Moderator: I. Glenn Cohen, Professor of Law, Harvard Law School; Faculty Co-Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics

This event is free and open to the public. Lunch will be provided. For questions, contact petrie-flom@law.harvard.edu or 617-496-4662.

This event is supported by the Oswald DeN. Cammann Fund.

Would Marlise Munoz’s Fetus Have Survived? Should It Have?

This is post is part of The Bioethics Program’s ongoing Online Symposium on the Munoz and McMath cases, which I’ve organized, and is cross-posted from the symposium. To see all symposium contributions, in reverse chronological order, click here.

Had the hospital not relented and removed the ventilator from Marlise Munoz’s body, could the Munoz fetus have been brought to term, or at least to viability? And if so, would the resulting child have experienced any temporary or permanent adverse health outcomes? Despite some overly confident commentary on both “sides” of this case suggesting a clear answer one way or the other—i.e., that there was no point in retaining the ventilator because the fetus could never be viable or was doomed to be born with catastrophic abnormalities; or, on the other hand, that but for the removal of the ventilator, the “unborn baby” was clearly on track to being born healthy—the truth is that we simply don’t know.

Before getting into the limited available data about fetal outcomes in these relatively rare cases, a bit of brush clearing. The New York Times juxtaposed reports about possible abnormalities in the Munoz fetus with the hospital’s stipulation about the fetus’s non-viability in ways that are likely to confuse, rather than clarify:

Lawyers for Ms. Muñoz’s husband, Erick Muñoz, said they were provided with medical records that showed the fetus was “distinctly abnormal” and suffered from hydrocephalus — an accumulation of fluid in the cavities of the brain — as well as a possible heart problem.

The hospital acknowledged in court documents that the fetus was not viable.

Whether intentionally or not, the nation’s newspaper of record implies — wrongly, I think — that the hospital conceded that the fetus would never be viable because of these reported abnormalities. In court, the hospital and Erick Munoz stipulated to a series of facts, including that Marlise was then 22 weeks pregnant and that “[a]t the time of this hearing, the fetus gestating inside Mrs. Munoz is not viable” (emphasis added). The hospital conceded nothing at all about any fetal abnormalities. In short, the Times, and many other commentors, have conflated “non-viability” as a function of gestational age with “non-viability” as a way of characterizing disabilities that are incompatible with life. As I read this stipulation, the hospital was not at all conceding that the fetus would never have been viable, had the ventilator remained in place. Rather, given the constitutional relevance of fetal viability, the hospital was merely conceding the banal scientific fact that the Munoz fetus was, at 22 weeks, not currently viable. There is nothing surprising in the least about the hospital’s “concession” about “viability” in the first sense, above: 22-week fetuses are generally not considered viable. Continue reading

Media Matters: Fetal Abnormalities in the Munoz Case

Nadia N. Sawicki

The tragic case of Marlise Munoz is finally at an end, now that John Peter Smith Hospital has, pursuant to an order by Judge R. H. Wallace, Jr., taken Ms. Munoz off life support and released her body to her family.  A few questions about the media’s role in this case linger in my mind, however; I will be addressing them in a series of posts.

In the days immediately preceding the court’s ruling, media reports frequently mentioned that the fetus Ms. Munoz was carrying was “distinctly abnormal.”  My impression is that these reports were intended to strengthen the case, at least in the public’s eyes, for withdrawal of life support.  Maintaining a dead body on life support against the family’s wishes in order to preserve the life of an able fetus is one thing, commentators seemed to suggest, but the case for doing so when the fetus suffers from hydrocephalus, heart problems, and deformation of the lower extremities is less compelling.

In the eyes of pro-life advocates committed to preserving the potentiality of life at all costs, however, the fetus’ medical condition seems irrelevant.  Unless a fetus is definitively not viable (which in this case the hospital finally conceded it was), a true commitment to the preservation of fetal life would not waver in the face of likely disability upon the child’s birth.

The fervent media reporting about the abnormality of the Munoz fetus seems, at least to me, to reflect a disconnect between the public’s perception of the significance of fetal disability in such cases, and its significance to disability advocates and advocates of pro-life policy.  What lessons, if any, can we learn from this disconnect?

In Memoriam: Adrienne Asch

I’m sorry to report that Adrienne Asch, director of the Center for Ethics at Yeshiva University and the Edward and Robin Milstein Professor of Bioethics, died yesterday of cancer. A social psychologist by training (but no relation to Solomon Asch), Professor Asch’s scholarly focus was the ethical, legal, and social implications of human reproduction, especially as it intersects with disability studies. An interdisciplinary scholar (as most bioethicists are), she taught courses at Wurzweiler School of Social Work, Cardozo School of Law, and Albert Einstein College of Medicine.

I didn’t always agree wth Adrienne, but she was an important scholar. As Sam Bagenstos noted, her death is “a huge loss for the disability world.” Among other things, she challenged pro-choice scholars and activists to rethink the implications of some of their policies and theories for people with disabilities in present and future generations. Here is one example of many.

Adrienne was also a lovely person. Some years ago, I picked her up from Wellesley (where she then taught) and drove her to Dartmouth (where I was a college senior) for a brief visit. It was, from start to finish, an epic fail on my part. In my defense, her assistant gave me terrible directions, I was then unfamiliar with the joy that is Boston rush “hour” traffic (including the fact that it begins at 3pm and lasts until 7pm), and this was before either cell phones or GPS. Nevertheless, what was supposed to be a three-hour drive that left time for her to change clothes at the hotel before her first talk became a four-hour tour during which I grew increasingly anxious about the prospects of getting her to the church on time, as it were. Adrienne was blind (hence my driving her), and this raised the additional issue of what to tell her, and when, about our travels. Ever the intellectual and mentor, as soon as she got into the car, she wanted to hear about the honors thesis I was writing. Alas, I turned out to be utterly incapable of navigating Boston’s traffic and discussing French existentialism at the same time, and soon we were hopelessly lost. I stopped at a gas station for directions (remember when you had to do that?), but by then we had hit rush hour traffic. We finally reached the highway and I managed to make up some time. As we discussed all manner of topics bioethical, I did the math and figured that if I, ahem, flirted with the speed limit, I could just have her to her talk on time.

The New Hampshire state police were not accommodating of this plan, however. Mere yards from our final exit I saw flashing lights in my rearview mirror. Feeling the car slowing down as I pulled over, Adrienne asked brightly, “Oh, are we there?” Mortified, I told her that no, in fact, I was being pulled over for speeding and that we would now certainly be at least a few minutes late for her talk. She would have been well within her rights to be furious with me, but was instead remarkably understanding. (The administrative director of Dartmouth’s Ethics Institute, by contrast, chided me for acting unethically by speeding.) Here‘s a great interview with Adrienne that captures some of her personality, as well as her views about disability and her experiences living with a disability.

Yeshiva University’s notice of Adrienne’s death, along with funeral and shiva details, is here. Tributes are being collected here. She will be missed.

[Cross-posted at The Faculty Lounge]

House and Senate Pass Bill Allowing HIV+ People to Donate Organs

In a week where most of the health law news has been, shall we say, less than hopeful for those of us who like the idea of robust health insurance expansion, as the Washington Blade reports there was one bright spot for progressive health policy: The House and Senate passed the HOPE (HIV Organ Policy Equity Act) which, if signed by the president, will authorize the HHS Secretary and OPTN to investigate and (if the research supports it) allow HIV+ individuals to donate organs to HIV+ individuals. You can read the full text here. The most relevant paragraph is


In adopting and using standards of quality under paragraph (2)(E), the Organ Procurement and Transplantation Network may adopt and use such standards with respect to organs infected with human immunodeficiency virus (in this paragraph referred to as HIV), provided that any such standards ensure that organs infected with HIV may be transplanted only into individuals who—(A) are infected with HIV before receiving such organ; and(B) (i)are participating in clinical research approved by an institutional review board under the criteria, standards, and regulations described in subsections (a) and (b) of section 377E; or (ii) if the Secretary has determined under section 377E(c) that participation in such clinical research, as a requirement for such transplants, is no longer warranted, are receiving a transplant under the standards and regulations under section 377E(c).

A few quick reactions: (1) What fascinating co-sponsors across the aisle: Sens. Barbara Boxer (D-Calif.) along with Tammy Baldwin (D-Wis.), Tom Coburn (R-Okla.) and Rand Paul (R-Ky.) as original co-sponsors. In the House, Reps. Lois Capps (D-Calif.) was lead sponsor and Andy Harris (R-Md.) was an original co-sponsor. (2) This is a good step forward, but one wonders whether limiting the potential recipients to HIV+ folks is itself wise. I can easily imagine cirucmstances where an individual who faces death would prefer an HIV+ organ even if it will carry with it a significant chance of HIV infection. Perhaps I don’t know enough about the immunology here and there is something I am missing (and commentators please help educate me and other readers). One might indeed wonder if, in some weird way, the bill now creates a disability discrimination (I say that because the Supreme Court has in its jurisprudence treated HIV as capable of causing a major life impairment under the Americans with Disabilities Act) in favor of those with HIV, because only they are potentially eligible for a certain pool of organs that may become available. That’s probably not actionable (as I understand it the ADA does not protect non-disabled people from discrimination in favor of the disabled), but it is at least quite curious. (3) Is this a portent of things to come from the administration? Relaxation of the much-reviled ban on gay men donating blood? Or will this “win” for the community (and to be clear the HIV+ community and the gay community are by no means isomorphic) going to sop some of the pressure on the blood ban?

A Case to Watch: Heimeshoff v. Hartford Life & Accident Ins. Co.

By Jeremy Kreisberg

A little over two weeks ago, the Supreme Court heard oral argument in a rather obscure ERISA case—Heimsehoff v. Hartford Life & Accident Ins. Co.  The case asks a rather basic question without a readily apparent answer: when a beneficiary of an ERISA-regulated insurance plan seeks to claim benefits, may the statute of limitations period for judicial review of the benefit decision begin before the completion of the plan’s mandatory internal resolution process?  In other words, can a statute of limitations for judicial review begin to run before a beneficiary is permitted to file suit?

The problem this lawsuit seeks to address can be clarified through a hypothetical: Imagine beneficiary B has an ERISA-regulated disability insurance plan with (i.e. provided by her employer but issued and administered by) insurer I.  B’s contract with I states that a three-year statute of limitations for judicial review of benefit decisions begins running at the date that B sends I proof of loss.  Then the following takes place:

  • B sends I her proof of loss on January 1, 2010.
  • I’s internal resolution process is completed on January 2, 2013, and B is denied her claim.
  • B believes the decision was erroneous and seeks to challenge it in court.
  • The court informs B that she has no claim because the statute of limitations—three years from January 1, 2010, the date that B sent I her proof of loss—has run.

B’s case certainly seems rather compelling.  After all, I has functionally denied B any opportunity to receive independent review of I’s benefit decision.  But at oral argument, the Justices raised several interesting arguments that make the outcome of this case far from clear.

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