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Yale Institution for Social and Policy Studies

Greetings from Stephen Latham, Bioethics Center Director


I'll take a brief break from midterm-grading to call your attention to some noteworthy bioethics-y events. First, we have an upcoming book talk by Laura Mauldin (Human Development and Family Studies, Gender Studies, UConn). Laura is a member of our Disability Studies group, and last year hosted the screening of "Sound and Fury"--a film about a deaf family's decision whether to get their daughter a cochlear implant--during our Bioethics Film Festival. On Friday, March 4, Laura will be talking about her new book, "Made to Hear: Cochlear Implants and Raising Deaf Children," at 2pm in the Fulton Room of the medical library at 333 Cedar Street. Laura's talk is in conjunction with the ongoing library exhibit, "Deaf: Cultures and Communication 1600-present," in the Cushing/Whitney Medical Library Rotunda.

Next, the Yale Pediatric Ethics Program will hear Dr. Ray Barfield (Duke, Palliative Care) speaking on the topic: “Brain surgery with Words: Navigating Difficult Conversations at the End of Life.” The presentation will be on Tuesday, March 15, from 5:00 pm to 6:30 pm at the Park Street Auditorium, 35 Park Street, New Haven. Please RSVP by March 11 to Karen.Kolb@yale.edu.

Finally, remember our upcoming Monday, March 28 Robert Levine Lecture from Dr. John Ioannides (Stanford, Medicine and Statistics). I'm still looking for a large enough room for what will undoubtedly be a popular presentation by this well-known critic of scientific research methodology. The talk will begin at 5:30pm; save the date!
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Updates from the Summer Institute

From Summer Institute Director Carol Pollard

The Summer Institute is giving two symposia this year for returning students and teachers! The dates are Saturday, May 28, and Saturday, July 23.  Both symposia will start with breakfast at 8:30 am, and lunch will be included at 12:30 pm in Bass 305.  This is an open invitation for all to attend. Please the dates for the lists of presentations in each symposium. Save the dates and plan on coming! More information will follow in subsequent Friday Newsletters.

Greg Becker, past Afternoon Seminar Leader, is on a roll! Below are some quotes from his obituary for Umberto Eco (famous for the book and movie titled “The Name of the Rose”). Well done Greg!

“Eco was one of the last of his kind, a universal scholar and Renaissance Man, a Humanist and fighter for Reason. Old School? For sure, but modern in very specific ways, drawing positive conclusions from the European history of ideas.

“I have loved his essays, and indeed, there is no book I’ve read more often than his NAME OF THE ROSE. Actually, what Eco proved with all his academic might has been a slap in the faces to the people believing that rationalism and humour are as different as Immanuel Kant and Stan Laurel. They are not.   Kant and Laurel take the same rail! Humour and Rationalism may not be brothers in blood but in bond, like Watson and Holmes (Eco would have loved this analogy!) The connecting line between both of them, the invisible force that makes them partners like Indiana Jones and Mrs. Ravenwood  (Eco also loved old style adventure stories) is their natural enmity against each - the irrational Zeitgeist against religious extremism and actually against metaphysics. Both attack misbeliefs and ignorance.”

“The times of the NAME OF THE ROSE aren’t over yet. The fight for rationalism continues, and that fight has never been more real than now. Eco did not write a historic epic; he wrote about the continuous struggle of civilization against superstition and barbarism, and reason and humour are the best weapons we have.”

“Humour and Reason are unequal "thunder buddies,” grabbing each other when they hear the thundering sound of an Ak47, fired by mediaeval assassins. Together they know no fear when they summon up the courage to fight insanity. For me, this is maybe the greatest wisdom Eco has bequeathed to us!”

Gregor Becker, Ph.D.

Head of the group for bioethics in life sciences 

            Jagiellonian University, Faculty of Biotechnology

            Kraków, Poland

Mayli Mertens writes: I'm sending this e-mail from the Association for Practical and Professional Ethics (APPE) Annual Conference where my paper ‘Objectivity Beyond the Red Line: a case for binocularity in war reporting" was awarded with the APPE's 'Best Formal Paper by a Graduate Student Award.’ ”  I wanted to thank you for all your feedback and great encouragement! It means so much to me.  (Congratulations Mayli! I knew that paper was a winner when I finished reading it last summer!)

The New York Times is running a great series titled “Unpublished Black History.”  Photos have been published on a daily basis and can be found at <nytimes.com/blackhistory>  

 

The Center for Cultural Diplomacy Studies has just published an announcement of new academic programs and international conferences. Check it out!

Interested in keeping up with issues affecting children’s health and welfare?  Take a look at Child Trends Indicator, an e-newsletter full of data on child well-being in the US.

Interested in keeping up with issues affecting an aging population and caregivers?  Check out Caring Times, an e-newsletter on issues concerning the health and welfare of our aging populations and the people who look after them.

Mayelin De La Cruz writes: “I received an acceptance for summer study with The Global Bioethics Initiative. I’m also getting involved in impacting my community more (and my home country - the Dominican Republic). I want to help with homelessness and minority needs. I was also hired for the summer by a non-profit organization called Fund for the Public Interest; they will be teaching me how to campaign for social/political issues regarding health, environment, inequality and more. I want to eventually get involved with community organizing and campaigning; it’s the right way for me to go. My plans for the future also include law school.” Mayelin also sent along the below article and added, “It occurred to me that we were throwing away organs that were infected with HIV, but they could be used to help people with HIV.” (Congratulations, Good Luck, and thanks for the article!)

HIV-Positive Organ Transplants Set To Begin At Johns Hopkins,” Brendan Smialowski, KTOO Public Media, February 23, 2016

James Ninia was just accepted into a Masters Program in Pharmacology at Stony Brook University. He writes:I'm also hard at work on constructing my senior thesis on Aristotle's Metaphysics. Although the content is pretty esoteric, I'm very much enjoying it, and I'm excited at my progress!!! You might be surprised to know that my interest in metaphysics was actually what sort of launched my interest in bioethics in the first place; that's why the topic of moral status/moral standing has me so enamored. Hope everything's going well at Yale. I still get misty whenever I pass through the New Haven train station while taking AMTRAK to Providence (Rhode Island). I'll definitely come by sometime soon - hopefully this summer :]” (Congratulations and Good Luck, James! And think about coming to the Alumni Weekend in July!)

Philip Galbo writes: “I hope all is well and that you are enjoying the spring term. I had the opportunity a few weeks back to catch up with Pascal (Thibeault) because he came to visit me in Buffalo. I gave him the real “Buffalo Experience”: Buffalo Sabres hockey, chicken wings, and the Niagara Falls. It was really great to see him and catch up; I miss everyone form the 2014 cohort. Recently some of my undergraduate research got published. The research was oriented around studying the effects of buoyancy on the shape of bio-membranes. Here I derive an equation that can be used to calculate a few bio-membrane shapes! Although my research interests are primarily oriented around cancer immunology, this was still a great project, and I am happy to see it get published.” (Congratulations Phillip!!  As always, come visit!!)

The first peer-reviewed open access journal dedicated to the publication of negative, null, and inconclusive (NNI) results covering any scientific discipline has been launched at Yale. It’s called Data Journal.

According to COMETS (CNRS Ethics Committee), current publications allow access to 10% of all produced scientific data.  In certain disciplines, valuable and important results are unpublished, underexploited or lost, and this is particularly true for negative results that can be completely forgotten.  Any result is important for the assessment, improvement or completion of the specific and global knowledge and the stimulation of scientific reflection.

Data Journal has been envisioned and designed to highlight the NNI results, going further than the previous attempts at publication of negative results. Standard article format, which focuses on the implication of positive results, is not appropriate. For NNI results, the core question should be about how these results were obtained. We propose a new article format focused on a comprehensive and detailed Materials & Methods section, for a comprehensive understanding of the results. Moreover, just like the art of Haiku, this new format also highlights the essence of thinking processes and the intellectual intention through its written sections intentionally wanted short and concise.

Finally, we do not agree with the tendency of quantifying the “value of science” through the development of different metrics used to quantify the productivity and/or the impact of scientific journals, articles or authors. We propose a very simple alternative that focuses on articles and the interest they arouse: the Interest Number (IN).

To know more:

http://www.data-journal.science

https://twitter.com/data_journal

https://www.facebook.com/datajournal.science/

Daniel Livendahl writes: “Almost a year has passed since we were last in contact. Time travels by so fast! Working in the department of haematology as a junior doctor last summer was an incredible experience! I really do like the care of very ill patients, and it has further strengthened my interest in the field of pediatric oncology. In January, I defended my Master's thesis on the subject of pediatric oncology, and a few weeks ago I was accepted as a PhD student in the same field. The title of my project is: "Identification of Cancer Predisposition Genes on the Basis of Families with Pediatric Cancers," and the aim is to define unknown hereditary genetic factors and their possible contribution to the development of childhood and adult cancers through epidemiological and molecular genetic methods. I am now in my last semester of medical school, and I am currently studying an elective course in paediatrics in Recife, Brazil, for one month.  I was also here during the Brazilian Carnival - that was a fascinating experience! I will graduate on June 10, and the week after I am starting to work as a doctor of internal medicine and in the emergency department at Helsingborg University Hospital (Sweden).” (Congratulations Daniel!  Please think about coming to the Alumni Weekend in July!)

Shari Esquenazi writes: “I was just notified that I was awarded the Internship at MD Anderson Cancer Center! I may not be able to visit this summer, but I promise I will be back to visit! (Congratulations Shari! What a perfect opportunity for you. Come visit whenever you can.)

The Connecticut Coalition To Improve End-of-Life Care announced an inter-active website that includes an abundant number of current resources, including: topics for both adult and pediatric populations; printable educational PDF’s for clinicians; networking resources and regional partners; and information about upcoming conferences and events.

Zohar Lederman writes: “I’m attaching a just-published paper on One Health and culling that I presented at our July 2015 Summer Symposium.” (Congratulations Zohar!)

Please check out my Articles Section!

Carol

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This Week on Campus

Friday, March 4

Laura Mauldin (Disability Studies, Family Development, Gender Studies, UConn) will be talking about her new book, "Made to Hear: Cochlear Implants and Raising Deaf Children," at 2pm in the Fulton Room of the medical library at 333 Cedar Street. Prof. Mauldin's talk is presented in conjunction with the ongoing library exhibit, "Deaf: Cultures and Communication 1600-present," in the Cushing/Whitney Medical Library Rotunda.

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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

Animal rights

David Grimm. “NIH to review its policies on all nonhuman primate research.” Science. February 22, 2016.

The National Institutes of Health (NIH) is about to take a closer look at the use of nonhuman primates in all federally funded U.S. research labs. Continue reading…

Biotechnology

Matt McFarland. “Scientists created a three-armed cyborg to play the drums like no human can.” The Washington Post. February 18, 2016.

Georgia Tech researchers have built a robotic arm that attaches to a drummer’s shoulder and plays along. This allows drummers — now equipped with three arms — to play sequences that two-armed humans can’t even attempt. Continue reading…

Climate change

Matt McGrath. “UN climate chief Christiana Figueres to step down.” BBC News. February 19, 2016.

The UN's top climate diplomat, Christiana Figueres, has said she will leave her post in July.

Ms Figueres said she would not accept an extension of her appointment which finishes this summer. Continue reading…

Environmental management

Lizette Alvarez. “Unlikely Battle Over Fracking Intensifies in Florida.” The New York Times. February 23, 2016.

Two years ago, a Texas-based oil and gas company was found to have been using hydraulic fracturing, known as fracking, and matrix acidizing, a fracking-like method that dissolves rocks with acid instead of fracturing them with pressurized liquid. Neither residents nor local governments knew about it because well stimulation, the catch-all term for both techniques, does not require a separate permit and is not regulated. The result has been an unlikely battle over fracking in Florida that is picking up steam across the state. Continue reading…

Developmental biology

Dana Goodyear. “The Stress Test.” The New Yorker. February 29, 2016.

The author chronicles the controversial rise and fall of STAP cell research. Continue reading…

End-of-life care

“Quebec's new assisted-dying law leaves doctors struggling to adapt.” CBC News. February 17, 2016.

Two months after Quebec's assisted-dying law came into effect, many doctors in Quebec are reluctant to accept requests, even if they accept medically assisted dying in principle. Continue reading…

Human rights

Step Vaessen. “Organ-trafficking syndicate uncovered in Indonesia.” Al Jazeera. February 22, 2016.

Three members of an organ trafficking syndicate have been arrested and doctors at a government hospital questioned by police after Al Jazeera uncovered an illegal organ trading operation. Continue reading…

Public health

Ariana Eunjung Cha. “Texas hospitals announce first quick test for Zika that could help identify when the virus reaches U.S.” The Washington Post. February 24, 2016.

Researchers in Houston have announced that they have developed the first hospital-based, rapid diagnostic test for Zika, an advance that they said should help public health officials identify if -- or, more likely, when -- infected mosquitoes reach the United States this summer. Continue reading…

Reproductive rights

Katie O’Reilly. “When Parents and Surrogates Disagree on Abortion.” The Atlantic. February 18, 2016.

Melissa Cook, a California surrogate currently pregnant with triplets, sued the commissioning father, who wanted her to abort one of the fetuses. Cook says she wants to take all three fetuses to term, adopt the unwanted third, and collect her full surrogacy fee. Cook’s case raises larger questions about the legal and social implications of third-party reproduction. Continue reading…

Ellen Barry and Celia W. Dugger. “India to Change Its Decades-Old Reliance on Female Sterilization.” The New York Times. February 20, 2016.

For decades, India has relied on female sterilization as its primary mode of contraception, funding about four million tubal ligations every year, more than any other country. This year, the government of Prime Minister Narendra Modi will take a major step toward modernizing that system, introducing injectable contraceptives free of charge in government facilities. Continue reading…

Sandhya Somashekhar. “The most important abortion case at the Supreme Court in a generation focuses on women, not fetuses.” The Washington Post. February 22, 2016.

When the Supreme Court meets next week to hear its first abortion-related case in nearly a decade, the justices will consider the most significant challenge to an argument that has become central to the antiabortion cause: that abortion hurts not just a fetus but also its mother. Continue reading…

Jon Herskovitz. “Oklahoma Supreme Court upholds state law on limiting abortion drugs.” Reuters. February 23, 2016.

The Oklahoma Supreme Court on Tuesday upheld a law aimed at limiting the use of abortion-inducing drugs, overturning a lower court decision that said the measure was unconstitutional because it did not apply to other medication. Continue reading…

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In the Journals

Editorial. “Safety First.” Nature. Vol. 530, Issue 381. February 23, 2016.

It is worrying that US government departments are unable to divulge basic data on research projects involving human subjects. Such data should be publicly available to ensure volunteers’ safety. Continue reading…

Lisa Rosenbaum. “Leaping without Looking — Duty Hours, Autonomy, and the Risks of Research and Practice.” JAMA Vol. 372, Issue 8 (2016), 701-703. February 25, 2016.

The author examines recent ethical concerns involved in studies of duty-hour restrictions for medical resident. One of the central issues is that the studies in questions would be undermined by obtaining consent from participants. Continue reading…

Rena M. Conti and Meredith B. Rosenthal. “Pharmaceutical Policy Reform — Balancing Affordability with Incentives for Innovation.” JAMA Vol. 374, Issue 8 (2016), 703-706. February 25, 2016.

The high prices of prescription drugs have become an issue of paramount concern to Americans. This concern has now found its way into policy proposals from presidential candidates and is preoccupying state and federal lawmakers. The authors examine different strategies for combatting rising drug prices, finally admitting that there is no single, easy answer. Continue reading…

Heather M. Prescott. “‘An Uncommonly Silly Law’ — Contraception and Disparities in the United States.” JAMA Vol. 374, Issue 8 (2016), 706-708. February 25, 2016.

Today in the United States, conservative social mores are putting women’s access to safe and affordable contraception at risk. Even in 2016, there is no assurance that birth control will be accessible to all U.S. women regardless of ability to pay. The author situates the present debate in the context of the legal debate of the past fifty years Continue reading…

Kavita Shah Arora and Allan J Jacobs. “Female genital alteration: a compromise solution.” Journal of Medical Ethics Vol. 42, Issue 3 (2016), 148-154. February 22, 2016.

Despite 30 years of advocacy, the prevalence of non-therapeutic female genital alteration (FGA) in minors is stable in many countries. Educational efforts have minimally changed the prevalence of this procedure in regions where it has been widely practiced. In order to better protect female children from the serious and long-term harms of some types of non-therapeutic FGA, the authors argue that we must adopt a more nuanced position that acknowledges a wide spectrum of procedures that alter female genitalia. Continue reading…

Susan E Wallace, Elli G Gourna, Graeme Laurie, Osama Shoush and Jessica Wright. “Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research.” Bioethics Vol. 30, Issue 3 (2016), 210-217.

Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. Continue reading…

Gil Siegal. “Genomic Databases and Biobanks in Israel.” The Journal of Law, Medicine, and Ethics Vol. 43, Issue 4 (2015), 766-775.

Large-scale biobanks represents an important scientific and medical as well as a commercial opportunity. However, realizing these and other prospects requires social, legal, and regulatory conducive climate, as well as a capable scientific community and adequate infrastructure. Israel has been grappling with the appropriate approach to establishing such a repository, and debates over the governance, structure, finance, and mode of operation shed a bright light on the underlying social norms, civic engagement and scientific clout in steering a governmental response to pressing medical needs. The article presents the backdrop of the Israeli scene, and explores the reasons and forces at work behind the current formulation of the Israeli National Biobank, MIDGAM. Continue reading…

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Opinion

The Conversation

Paula Gerber. “Making commercial surrogacy illegal only makes aspiring parents go elsewhere.” February 17, 2016.

The author argues that Australia ought to remove the ban on compensated surrogacy. Current laws have not deterred Australians from heading offshore to engage in surrogacy, and none have been prosecuted for doing so. Rather than trying to stop compensated surrogacy, the author argues that Australia should put in place safeguards to prevent exploitation of vulnerable women and protect the rights of children born through surrogacy. Continue reading…

Rebecca Shlafer and Laurel Davis. “Pregnant, in prison and facing health risks: prenatal care for incarcerated women.” February 19, 2016.

Between 1980 and 2010, the number of women in prison in the United States increased by 646 percent, going from 15,000 women to 113,000. Although accurate statistics are hard to obtain, it’s estimated that 3 to 4 percent of women are pregnant when they arrive at prison. Continue reading…

Wendy F. Hensel and Leslie E. Wolf. “Hospitals rationing drugs behind closed doors: a civil rights issue.” February 23, 2016.

The United States is facing a shortage of prescription drugs, ranging from antibiotics to cancer treatments. These shortages are putting the medical profession in the frequent position of deciding who will get the drugs that are in short supply and, more importantly, who will not. The authors argue that there are civil rights laws and state laws governing informed consent that apply to such decisions and place significant constraints upon them. Continue reading…

Practical Ethics

Simon Beard. “Using birth control to combat Zika virus could affect future generations.” February 22, 2016.

It has recently been argued that birth control is a key way of tackling the Zika virus’s apparently devastating effects on unborn children. The author argues, however, that the social costs of such tactics might be equally if not more significant. Continue reading…

The Washington Post

Charles Lane. “Shining a light on one of the high court’s darkest moments.” February 17, 2016.

The author discusses a recent book about Buck v. Bell, the 1927 case in which the US supreme court approved Virginia’s involuntary sterilization of “feeble minded,” epileptic and other purportedly genetically “unfit” citizens. Continue reading…

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