Yale Institution for Social and Policy Studies

Greetings from Stephen Latham, Bioethics Center Director

The bioethics center has its newest member: Alexander Barton Messing, born last Thursday. Alex’s mom is our own many-hatted bioethicist Lori Bruce, who chairs the Community Bioethics Forum, helps run our Summer Institute, and is the Executive Director of the Connecticut Coalition to Improve End of Life Care. Congratulations to Lori, father Noah, and big brother Owen on their new arrival—and welcome, Alex!

And speaking of the Connecticut Coalition to Improve End of Life Care:  the Coalition is hosting an all-day conference on “New Directions in Palliative Care” tomorrow in the new conference center on Yale’s West Campus.  The day will feature a number of breakout sessions on aspects of palliative care (including one led by yours truly), as well as plenary speakers Timothy M. Quill, MD (Rochester), on "Navigating the Shoals of Palliative Care: Partnership and Non-Abandonment;" Angelo Volandes, MD, MPH (Harvard)—a past Bioethics Center Robert J. Levine Lecturer—on "Advanced Care Planning Using Video Tools;" and Christina Puchalski, MD, MS (George Washington) on "Spirituality: An Essential Part of Palliative Care."  Agenda and registration details are at the link.


On Wednesday the 16th our Technology and Ethics group will hear from Vickie Sutton, Director of the Center for Biodefense, Law and Public Policy at Texas Tech. She will speak on “Virtual and Virtuous People” at 4:15 at ISPS.

We’ll be inaugurating a new speaker series on environmental ethics on April 23.  Christiana Peppard (Theology, Fordham) will speak on “Just Water: Theology, Ethics and the Global Water Crisis.” Christy is a Yale Divinity grad and a longtime friend of the Bioethics Center. Her talk will be in the RSV Room at the Divinity School at 12:30; pizza—and tap water!—will be served.

If you have news or an event you’d like mentioned in this newsletter, email me at Stephen.Latham@Yale.edu with the word “Frimail” in your subject-line.

  BIOETHICS EVENTS
  Wednesday, April 16 at 4:15 PM
Technology & Ethics group
Location: 77 Prospect St, room A002
Speaker: Vickie Sutton, Paul Whitfield Horn Professor of Law, Texas Tech School of Law
Topic: Virtual and Virtuous People

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Updates from the Summer Institute

From Associate Director Carol Pollard

Alexis Kaiser writes: “I took first place, for my senior research project, at an undergraduate research conference in Contemporary Bioethics.  Very exciting!  I’m hoping to publish my results, and I’ll certainly let you know if that happens.”  (Congratulations Alexis). 

Aaron Klink writes: “I’ve been invited to present at the International Congress on Palliative Care in Montreal.  My paper, titled “Battles in the Final Battle: Moral Injury and Pastoral Care at the End of Life,” emerges from my ongoing work on the ethical issues related to PTSD and Chaplain care with Veterans.”  (Congratulations Aaron!)

Sophie House writes: “My news is that I will be joining you back at Yale in the Fall!  I received my Yale Law School acceptance today and am overjoyed!”  (Congratulations Sophie!  There may be a few lunches together in our future!)

Lori Bruce (our assistant director) and her husband have a new baby boy, Alexander “Alex” Barton Messing.  (Congratulations to all four of you!)

Alma Massaro writes: “Today I’ve finished my PhD.  It has been a long trip, but certainly worth doing!  This is certainly a very special, proper Happy Day!”  (Congratulations Dr. Massaro!  We’re all very proud of you.)

Jessica Richard writes: “After returning from the Summer Program, as you are now aware, I became a Research Assistant in the Faculty of Law at Monash University.  During my time as a Research Assistant, I helped organise a symposium on Thaler and Sunstein's 'Nudge' and its application to health policy in Australia.  Over the summer, I interned as a Policy Officer at the Department of Premier and Cabinet (Human Capital and Social Policy), where I advised the Premier of Victoria and Cabinet in matters of health and education policy.  At the moment, I am writing my Honours thesis on the regulation of death in Australian law and the "medicalisation" of law (the deference of the State and the law to the medical profession). Best wishes to everyone at the Center!”  (Congratulations to you, Jessica!  What a busy lady you are!)

Sally Satel, past and present seminar presenter and morning lecturer, has co-authored a book with Emory University psychologist Scott Lilienfeld, titled “Brainwashed: The Seductive Appeal of Mindless Neuroscience.”  What follows is some information about the book: In the last decade, neuroscience has been wielded in many domains - law, marketing, mental health, academia, etc… - to offer explanations for practically everything about human behavior and culture. These forays into society at large beg the question: what is hype, and what could offer real, meaningful explanation for some of the deepest human mysteries?  This book is a self-pronounced exposé of mindless neuroscience: the oversimplification, interpretive license, and premature application of brain science in the legal, commercial, clinical, and philosophical domains. (Congratulations Sally!) 

 -Carol

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This Week on Campus

Monday, April 14

Zigler Center Lecture
Time: 9 AM
Location: 230 S Frontage Rd, Cohen Auditorium
Speakers: Matthew Melmed & Lynette Fraga, Executive Directors, Zero To Three & Child Care Aware of America
Topic: Babies, Care, Policy, & Politics

Wednesday, April 16

Environmental Law & Policy Webinar
Time: 12 PM
Location: online
Speaker: Ariane Lotti, Assistant Policy Director, National Sustainable Agriculture Coalition
Topic: How the New Farm Bill Impacts Sustainable Food and Farming Systems

School of Forestry Seminar
Time: 12 PM
Location: 195 Prospect St, Burke Auditorium
Speaker: Deborah Swackhamer, Professor, Science, Technology, and Public Policy, Hubert H. Humphrey School of Public Affairs; Professor, Environmental Health Sciences;
Co-Director, Water Resources Center, University of Minnesota
Topic: Water Sustainability: Planning for Future Generations

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Calls for Papers & Nominations

Penn Bioethics Journal's next and final deadline for this semester is coming up on April 14th. Students, consider this competitive opportunity to be published in a peer-reviewed journal on EBSCOhost Databases. You can see the call for papers here and email your submissions to bioethicsjournal@gmail.com

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Articles of Interest

To read the full text of an article, click on its link and it will open in a new window.  

Some sites may require free registration; others may require that you or your organization have a paid subscription.

In the News


Featured Article

Peikoff, Kira. Fearing punishment for bad genes. The New York Times. 7 April 2014.
About 700,000 Americans have had their DNA sequenced, in full or in part, and the number is rising rapidly as costs plummet — to $1,000 or less for a full genome, down from more than $1 million less than a decade ago. But many people are avoiding the tests because of a major omission in the 2008 federal law that bars employers and health insurers from seeking the results of genetic testing. The Genetic Information Nondiscrimination Act, known as GINA, does not apply to three types of insurance — life, disability and long-term care — that are especially important to people who may have serious inherited diseases. Continue reading...

Animal Ethics 

Overgaard, Sidsel. Banning traditional animal slaughter, Denmark stokes religious ire. NPR.
In a conflict that pits animal welfare against religious rights, Denmark has ordered that all food animals must be stunned before being killed. The move effectively bans the ritual slaughter methods prescribed in both Muslim and Jewish tradition. Continue reading...

Environment

Johnson, Carolyn. Conservation biologists use evolution to identify most valuable species. The Boston Globe. 10 April 2014. In the face of a massive extinction crisis, conservation biologists have made all sorts of lists -- a sort of who’s who of endangered, threatened, and vulnerable snakes, bugs, birds, and mammals that could wink out of existence as their habitat vanishes or their traditional food becomes scarce. But which species should be at the top of the priority list for saving, and which last? Should they be ordered by scarcity, by economic importance, or even by cuteness? In a paper published in the journal Current Biology on Thursday, a team led by a Yale University ecologist has used a new measure to rank birds: which ones hold the greatest evolutionary information. Continue reading...

Health and Medicine

How public health advocates are trying to reach nonvaccinators. NPR. 6 April 2014.
Whooping cough made a comeback in California last year, which researchers have linked to vaccine refusals. And with new measles outbreaks in Southern California, New York and British Columbia, the debate over vaccination is also spreading. It can be a touchy subject, and even some physicians are unsure of how to approach parents who don't want to vaccinate their children. Still, health professionals and pro-vaccine parents are trying new ways to share their message. Continue reading...

Abelson, Reed and Sarah Cohen. Sliver of Medicare doctors get big share of payouts. The New York Times. 9 April 2014. A tiny fraction of the 880,000 doctors and other health care providers who take Medicare accounted for nearly a quarter of the roughly $77 billion paid out to them under the federal program, receiving millions of dollars each in some cases in a single year, according to the most detailed data ever released in Medicare’s nearly 50-year history. Continue reading...

Grady, Denise and Sheri Fink. The Medicare data’s pitfalls. The New York Times. 9 April 2014. The release on Wednesday of Medicare payment data is getting mixed reviews from doctors. Many say they favor sharing information but worry that the data presented by Medicare omits important details and may mislead the public and paint an unfairly negative picture of individual doctors. Continue reading...

Peralta, Eyder. Health secretary Kathleen Sebelius is resigning. NPR. 10 April 2014.
Health Secrerary Kathleen Sebelius is resigning after a five-year term that will no doubt be remembered for the calamitous implementation of President Obama's signature legislation, the Affordable Care Act. Continue reading...

Law and Bioethics 

Kanter, James. European Union debates initiative on embryo protection. The New York Times. 10 April 2014.
A packed hearing on a petition calling for the protection of human embryos led to a rare outbreak of raucous exchanges in the European Parliament on Thursday — a sign that the battles over abortion and stem cell research that divide nations like Spain and the United States are making a serious incursion into European Union affairs. The petition, which has garnered 1.8 million signatures, is a sign that the so-called culture wars that have long colored national politics in some countries may be becoming increasingly salient across Europe. Continue reading...

Medical Ethics

Robles, Frances and Eric Lipton. Political ties of top billers for Medicare. The New York Times. 9 April 2014.
Two Florida doctors who received the nation’s highest Medicare reimbursements in 2012 are both major contributors to Democratic Party causes, and they have turned to the political system in recent years to defend themselves against suspicions that they may have submitted fraudulent or excessive charges to the federal government. Continue reading...

Research Ethics

Greenfieldboyce, Nell. Scientists publish recipe for making bird flu more contagious. NPR. 10 April 2014.
The Dutch virologist accused of engineering a dangerous superflu a few years ago is back with more contentious research. In 2011, Ron Fouchier and his team at Erasmus Medical Center took the H5N1 flu virus and made it more contagious. Now the team has published another study with more details on the exact genetic changes needed to do the trick. Continue reading...

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In the Journals

Bjorgvinsdottir, Katrin. Silent, invisible and unacknowledged: Experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scandinavian Journal of Caring Sciences. March 2014.
The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children. Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS. Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience. Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority. Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS. Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting. Study limitations: In choosing participants for the study a sampling bias may have occurred. Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations. Continue reading…

Fins, Joseph J. Deep Brain Stimulation, Brain Maps and Personalized Medicine: Lessons from the Human Genome Project. Brain Topography. January 2014.
Although the appellation of personalized medicine is generally attributed to advanced therapeutics in molecular medicine, deep brain stimulation (DBS) can also be so categorized. Like its medical counterpart, DBS is a highly personalized intervention that needs to be tailored to a patient’s individual anatomy. And because of this, DBS like more conventional personalized medicine, can be highly specific where the object of care is an N = 1. But that is where the similarities end. Besides their differing medical and surgical provenances, these two varieties of personalized medicine have had strikingly different impacts. The molecular variant, though of a more recent vintage has thrived and is experiencing explosive growth, while DBS still struggles to find a sustainable therapeutic niche. Despite its promise, and success as a vetted treatment for drug resistant Parkinson’s Disease, DBS has lagged in broadening its development, often encountering regulatory hurdles and financial barriers necessary to mount an adequate number of quality trials. In this paper we will consider why DBS—or better yet neuromodulation—has encountered these challenges and contrast this experience with the more successful advance of personalized medicine. We will suggest that personalized medicine and DBS’s differential performance can be explained as a matter of timing and complexity. We believe that DBS has struggled because it has been a journey of scientific exploration conducted without a map. In contrast to molecular personalized medicine which followed the mapping of the human genome and the Human Genome Project, DBS preceded plans for the mapping of the human brain. We believe that this sequence has given personalized medicine a distinct advantage and that the fullest potential of DBS will be realized both as a cartographical or electrophysiological probe and as a modality of personalized medicine. Continue reading…

Jameton, Andrew. Together With a Current Application of the Concept.Journal of Bioethical Inquiry. October 2013.
The concept of moral distress can be extended from clinical settings to larger environmental concerns affecting health care. Moral distress—a common experience in complex societies—arises when individuals have clear moral judgments about societal practices, but have difficulty in finding a venue in which to express concerns. Since health care is large in scale and climate change is proving to be a major environmental problem, scaling down health care is inevitably a necessary element for mitigating climate change. Because it is extremely challenging to discuss these concerns in health care settings, those concerned about climate change and health care experience distress. This article outlines some philosophical concepts and perspectives that may be useful in mitigating this distress. Continue reading…

Portacolone, Elena. Time to reinvent the science of dementia: the need for care and social integration. Aging and Mental Health. April 2014.
Objectives: The increasing number of older adults with dementia is a large and growing public health problem. Alzheimer's disease, the prevailing form of dementia, is projected to quadruple worldwide. To date, the care and social integration of individuals with dementia is complicated by limited collaborations between biomedicine and other disciplines. The objective of this paper is therefore to reflect on the orientation of biomedicine with regard to the science of dementia, and to articulate a path for moving forward.
Methods: The authors drew upon, and expanded, the insights of an interdisciplinary, international workshop entitled ‘Bioethics and the Science of Aging: The Case of Dementia’ held in October 2012 at the University of California in Berkeley.
Results: The care of individuals with dementia compels solid interdisciplinary collaborations. There are several issues affecting the care of individuals with dementia: (1) an evolving definition of dementia; (2) the ambiguous benefits of the diagnosis of dementia; (3) ethical conflicts concerning consent processes and clinical trials; and (4) a limited understanding of the perspective of the person with dementia.
Conclusion: We argue that it is time for a renewed dialogue between biomedicine and other disciplines -- particularly public health, the social sciences, the medical humanities and bioethics. This interdisciplinary dialogue would facilitate a process of self-reflection within biomedicine. This dialogue will also provide the foundation for equitable public health interventions and will further prioritize the values and preferences of individuals with dementia, as well as their care and social integration. Continue reading…

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Opinion


Ars Technica

Timmer, John. UK Parliament slams the BBC for succumbing to false balance on climate. April 4, 2014.
The UK Parliament's Science and Technology Committee has recently delivered a report on the state of climate knowledge and communication in the country. Although it doesn't spare the government from criticism, the report notes that most of the public looks to the BBC to provide authoritative coverage on science. The report concludes that in this case, the BBC's news division is failing its readership and viewers. Rather than providing authoritative information, the BBC is succumbing to false balance, and its director of Editorial Policy and Standards gave testimony on science coverage that appears to be incoherent. Continue reading…

Timmer, John. Legal or privacy problems? Journal changes its tune on climate paper. April 8, 2014.
The strange saga of a paper about the public behavior of some of the people who argue about climate science got stranger still over the weekend. The paper, slated for publication in the journal Frontiers in Psychology, was hung up in limbo for several years before finally being pulled from the journal's website entirely. At the time, the journal posted a statement saying that the reason for its vanishing was that "the legal context is insufficiently clear," and the journal's lawyer told Ars that there were no ethical concerns regarding the study. Continue reading…

Chicago Tribune

Editorial. Medicare’s data release is welcome sunshine. April 10, 2014.

Federal officials released a huge trove of data Wednesday that shows what Medicare has paid to more than 880,000 doctors and other health care providers nationwide. There were some eye-popping stats:Continue reading…

The Economist

Science & Technology. Asgard’s fire. April 12, 2014.
Well begun; half done. That proverb—or, rather, its obverse—encapsulates the problems which have dogged civil nuclear power since its inception. Atomic energy is seen by many, and with reason, as the misbegotten stepchild of the world’s atom-bomb programmes: ill begun and badly done. But a clean slate is a wonderful thing. And that might soon be provided by two of the world’s rising industrial powers, India and China, whose demand for energy is leading them to look at the idea of building reactors that run on thorium. Continue reading…

Los Angeles Times

Editorial. An FDA success story on antibiotics. April 4, 2014.
Skeptics scoffed late last year when the Food and Drug Administration issued guidelines to restrict the use of antibiotics in livestock. Most of the antibiotic use in this country is in the agriculture industry, with the drugs routinely added to animal feed to promote growth and prevent infections from sweeping through crowded and unsanitary operations. The voluntary guidelines would never be followed, critics predicted, and agricultural antibiotics would continue to contribute to the rise of resistant infections that sicken 2 million people a year in the United States and kill 23,000.Continue reading…

McManus, Doyle. Is Obamacare too big to fail? April 6, 2014.
When Obamacare's first open-enrollment period ended last week, the tally was impressive: 7.1 million Americans signed up for insurance on federal and state exchanges by the March 31 deadline, several million more signed up for Medicaid and a whole lot of under-26 Americans got covered by their parents' plans. Continue reading…

Editorial. Medicare’s real doctor payment problem. April 10, 2014.
The news that a small percentage of the country's physicians collected billions of dollars from Medicare in a single year may or may not be a testament to individual greed; some of the top recipients are under investigation for allegedly bilking the system, while others work long hours delivering costly care. But it is a powerful reminder that the program needs to stop rewarding doctors for the quantity of care they deliver rather than the quality. Happily, there's a bipartisan plan to do just that; unhappily, lawmakers haven't been able to agree on how to cover its cost. If Congress needed any further incentive to settle its differences, the fact that 1,000 doctors raked in $3 billion from Medicare should provide it. Continue reading…

New Scientist

Metrebian, Nicola. Should we pay drug users to get vital vaccines? April 9, 2014.
How do you get more injecting drug users, who have a serious risk of getting and transmitting hepatitis B, to take a highly effective vaccine against the virus? The answer could be as simple as offering them a £10 shopping voucher each time they get one of the three shots they need. Continue reading…

Editorial. Parental guidance advised over virtual embryos, April 10, 2014.

Here’s a thought experiment. Imagine you can produce a genetic profile of a child by virtually shuffling your genome with that of a potential partner. You could see the child's physical features, their susceptibility to certain diseases, perhaps even get some sense of their personality. Would you want to see such a profile? Would you use it to decide whether to have a child? Continue reading…

MacKenzie, Debora. Is stockpiling pandemic flu drugs shrewd or misguided? April 10, 2014.
The antiviral drugs that governments stockpile against a flu pandemic are in the spotlight yet again. An independent medical research group and the editors of the medical journal BMJ have again expressed doubts they first raised in 2009 over their efficacy in a flu pandemic, based on recently released data from research on ordinary winter flu. Continue reading… 


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