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Yale Institution for Social and Policy Studies

Greetings from Stephen Latham, Bioethics Center Director



This year’s annual Robert J. Levine Lecture is being given by Dr. John P.A. Ioannidis of Stanford University. The lecture is being given on Monday, March 28, at 5:30 pm, at Davies Auditorium in the Becton Lab on Prospect Street. Dr. Ioannidis is a major figure in the contemporary debate about “irreproducibility” in scientific and medical research. His 2005 paper, "Why Most Published Research Findings Are False" is the most-downloaded technical paper from PLoS Medicine. Ioannidis has published numerous influential empirical evaluations of the validation- and replication-performance of studies in diverse scientific fields, including genetics, clinical trials, and neuroscience.  His work aims to improve research practices and to increase the yield of validated and useful scientific findings.  Dr. Ioannidis holds the C.F. Rehnborg Chair in Disease Prevention at Stanford University, and he is Professor of Medicine, and of Health Research and Policy, and Director of the Stanford Prevention Research Center at the School of Medicine; Professor of Statistics (by courtesy) at the School of Humanities and Sciences; one of the two Directors of the Meta-Research Innovation Center at Stanford; and Director of the PhD program in Epidemiology and Clinical Research. 


Congratulations to Yale Bioethics Scholar Bonnie Kaplan on the publication of her new article, “How Should Health Data Be Used?  Privacy, Secondary Use, and Big Data Sales,” in the Cambridge Quarterly of Healthcare Ethics.

Look at the "On-campus" listing below for a Yale Pediatric Ethics talk this Tuesday on delivering bad news in the NICU.

Save the date! On the evening of Wednesday, April 27, our friends at Yale's Community Bioethics Forum will present a talk by Dr. John S. Hughes of Yale's Program for Biomedical Ethics on the topic, "Ethical Considerations in Health Policy." Details at the link!


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Updates from the Summer Institute

From Summer Institute Director Carol Pollard

 Save the Date!  Sunday night, June 5th, a dinner and panel discussion will take place for all incoming students and instructors (and past students and instructors) at the Joseph Slifka Center at Yale. Present students and teaching staff will be the panelists. Watch for more information in this column! The topic is “Cross-Border Surrogacy Transactions.” You will need to sign up with me!  (The Slifka Center is sponsoring the panel discussion and dinner – we gratefully accept!)

 Alex Cernat sent along an article for us. “I thought this was interesting, especially in the face of changing euthanasia and physician-assisted suicide laws.” “I Helped Eight People End Their Lives. By the time you read this, I’ll have ended mine,” John Hofsess, Toronto, Ontario, Canada. (John Hofsess helped eight people commit suicide, including the poet Al Purdy)

Congratulations to Avital Arnson on her recent engagement!

Jay Velez sent this article along for us: “Doctors Urge ‘Compromise’ on Female Genital Mutilation,” Nima Elbagir, CNN Health, February 23, 2016. (Thank you Jay! Jay is asking for comments!)

Courtney Petty writes: “I have been thinking about my time spent in the Bioethics Summer Institute and wanted to ask about donation opportunities. I’d like to send a small gift to assist a student with tuition. Or I could make a donation to the Program in general. I know you have expenses associated with the breakfast foods and snacks you provide, office supplies the students use, and a host of other things. What is needed the most? As for me, I’m now a healthcare consultant with Navigant Consulting, Inc. I still have an interest in bioethics. The Center for Practical Bioethics in Kansas City isn’t too far from me, so I’m on their listserv. I’m hoping to make it to their symposium this year. I went two years ago and heard a presentation by Dr. Karla Hollloway from Duke. It was really interesting. If my schedule allows, I would love to come back this summer. I’m still in contact with Selena (Marshall) and Marie (Schnebelen.) I know they are both planning to return, and it would be great to see them again.”  (Thank you so much for your kind offer, Courtney! Whatever you want to do is fine with me. And Congratulations on your achievements! Alumni Weekend awaits you!)

The March 4th issue of the e-newsletter Child Trends is now available online. Articles about Hispanic children, steps to improve children’s outcomes, children in the welfare system, and others always make this e-newsletter an excellent read.

The Petrie-Flom Center issued an invitation to come to their 10th Anniversary Conference Celebration, where Petrie-Flom and other prominent Harvard Law School alumni will discuss major trends, developments, and open questions in the fields of health law policy, biotechnology, and bioethics. Save the date: March 29, 8 am – 5 pm, Harvard Law School, 1585 Massachusetts Avenue, Cambridge, Massachusetts.

Cagri Zeybek Unsal writes: “For my PhD thesis, I will make a comparative analysis of existing regulations on bioethical issues between Turkey and the European Union from a bioethical perspective.” (Good Luck Cagri!)

Olga Riklikiene writes: “I think and speak a lot about my experience and my growth at the Summer Institute. After this past summer I started to work even more intensively on bioethical issues. Recently, some co-authors and I prepared a manuscript on the topic of death and its criteria from several perspectives: medical, philosophical and legal. The title is “Determination of Death in Metaphysical, Clinical, and Legal Discourses.” (Congratulations Olga!)

Here is information about the Connecticut Coalition to Improve End-of-Life Care’s meeting titled “Best Practices in Palliative and End-of-Life Care for Children and Families taking place on April 23rd.
Kavot Zillen, who just defended her LLD thesis (about health care professionals’ freedom of religion) last Friday wanted to provide links to her book. (Congratulations Kavot! Click here for a picture of Kavot, Santa Slokenberga, and Ros Doherty from a past summer!) 

Jack Kanouzi writes: “Last week Benjamin Arriaga asked me to help in an investigative project financed by the European Commission (European Union). They were really happy with my work, so they have just sent me an email today telling me that I’m now officially member of a group of investigators in this project! (Erasmus EU Palliative Care MOOC Project). (Congratulations Jack!)

Helen Smith writes: “This month I had a brief article published in the journal Speech Pathology, inspired by some of last summer’s sessions and discussions; the article deals with ethical considerations in human genome testing relevant to speech and language pathology. It was during a session with my colleagues on the ethics board, sharing information about my summer at the Bioethics institute, that they suggested an article be written. Also, inspired by one of last summer’s electives, I completed a mediation course last week. I hope to pursue ethics mediation with more vigour now I have some more formal training behind me -- although I have to sit the practical assessment next weekend for national accreditation…so fingers crossed I get through…” (Congratulations and Good Luck with the “exam.” See you in July for Alumni Weekend!)  (Please click here for Helen’s paper – very cute picture of you, Helen!)

Don’t forget about the Unite for Sight’s Global Health & Innovation Conference, taking place at Yale University, Saturday, April 16 to Sunday, April 17.  For further information, please see: http://www.uniteforsight.org/conference

In-home care for the aged has been evolving and one of those ways is the construction of “Granny Pods,” or tiny houses built on properties adjacent to, or on the property of, caregivers.


Please be sure to read the
Articles I’ve collected for you.

Who is the “
BEAUTIFUL MYSTERY WOMAN” in this photo?  (Sahdeea Sultana!)

Click here to add some beauty to add to your lif
e!

Carol


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This Week on Campus

Tuesday, March 15

Yale’s Pediatric Ethics Program presents Drs. Ray Barfield and Megan Jordan (Pediatric Palliative Care, Duke) speaking on “Brain surgery with Words:  Navigating Difficult Conversations at the End of Life.” The talk will be from 5:00 pm to 6:30 pm at the Park Street Auditorium, 35 Park Street, New Haven. (Note: this is not the usual Cohen Auditorium location for such programs!)

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Conferences & Off Campus Events

Saint Louis University School of Law presents its 28th Annual Health Law Symposium: "Dying Fast & Slow: Improving Quality of Dying and Preventing Untimely Deaths," April 1, 2016.

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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

Biotechnology

Heidi Ledford. “CRISPR: gene editing is just the beginning.” Nature. March 7, 2016.

Much of the conversation about CRISPR–Cas9 has revolved around its potential for treating disease or editing the genes of human embryos, but researchers say that the real revolution right now is in the lab. Nature examines five ways in which CRISPR–Cas9 is changing how biologists can tinker with cells. Continue reading…

 

End-of-life

The Canadian Press. “Deciding on assisted death in context of mental illness highly complex, experts say.” CBC News. March 6, 2016.

One of the most contentious issues sparked by Canada's upcoming right-to-die legislation is whether people with mental illness should be eligible to seek a doctor's help to end their lives, along with those suffering from a "grievous and irremediable" physical disease like terminal cancer. Of major concern is how to tease apart whether a request for aid in dying arises from a person's mental state related to their illness — severe depression, for instance, can lead to suicidality — or sound reasoning based on a desire to escape prolonged suffering. Continue reading…

 

Ovetta Wiggins. “Effort to legalize assisted suicide fails — again — in Maryland.” The Washington Post. March 3, 2016.

An assisted-suicide bill failed in the Maryland Senate last Thursday, effectively ending a year-long push to make the state one of just a few in the nation where doctors can prescribe a lethal dose of medicine for the terminally ill. Continue reading…

 

Environmental management

Adam Liptak and Coral Davenport. “Chief Justice Rejects Effort to Block E.P.A. Limit on Power Plants.” The New York Times. March 3, 2016.

In a significant victory for the Obama administration, Chief Justice John G. Roberts Jr. on Thursday refused to block an Environmental Protection Agency regulation limiting emissions of mercury and other toxic pollutants from coal-fired power plants. Continue reading…

 

Noah Remnick and Rick Rojas. “Toxic Passaic River to Get $1.38 Billion Cleanup Over 10 Years.” The New York Times. March 4, 2016.

Environmental officials announced that they had made final a plan to remove more than a century’s worth of industrial toxins from the lower eight miles of the Passaic River in New Jersey. The project would be among the most ambitious and expensive cleanup efforts in the 35-year history of the federal Superfund program. Continue reading…

 

Erik Olsen. “Marine Life Thrives in Unlikely Place: Offshore Oil Rigs.” The New York Times. March 7, 2016.

The location of oil rigs off the coast of California, in marine-protected areas in a cold current that swoops down from British Columbia, have made them perfect habitats for fish and other sea life. Continue reading…

 

Genetic counselling

Beth Daley. “When baby is due, genetic counselors seen downplaying false alarms.” New England Center for Investigative Reporting.

The authors explore the conflicts of interest in genetic counseling and the things expecting parents should know before consulting a genetic counselor. Many of the country's more than 4,000 certified genetic counselors are employed by the laboratories that produce and sell genetic tests, leading to a tremendous potential for conflicts of interest in an environment with no oversight from the FDA. Continue reading…

 

Privacy

Andrew Pollack. “Genetic Test Firm to Put Customers’ Data in Public Domain.” The New York Times. March 8, 2016.

A leading genetic testing company is putting genetic information from the people it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases. Continue reading…

 

Public policy

Sarah Knapton. “Couples get free IVF if they persuade friend to donate sperm.” The Telegraph. March 6, 2016.

Couples in the UK will be offered free IVF treatment if they can persuade a friend to donate sperm, under a new scheme designed to encourage more men to become sperm donors following a national shortage. Continue reading…

 

Reproductive health

Stephanie Russell-Kraft. “The Right to Abortion—and Religious Freedom.” The Atlantic. March 3, 2016.

U.S. courts have claimed to decide women’s health cases on the basis of privacy, but they’ve often favored one particular faith’s conception of when life begins. Continue reading…

 

Adam Liptak. “Supreme Court Blocks Louisiana Abortion Law.” The New York Times. March 4, 2016.

The Supreme Court temporarily blocked a Louisiana law that its opponents say would leave the state with only one abortion clinic. The court gave no reasons, though it did say that its order was “consistent with” one last June that blocked part of a Texas abortion law. Continue reading…

 

Anastasia Moloney. “LatAm women face 'lottery' accessing life-saving contraception and abortions: Amnesty.” Reuters. March 7, 2016.

Access to potentially life-saving contraception and abortion can be a lottery for women and girls in Latin America, often depending on their ability to pay or the personal and religious views of a health worker, Amnesty International said on Monday. Continue reading…


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In the Journals

Katharine Jenkins. “Amelioration and Inclusion: Gender Identity and the Concept of Woman.” Ethics Vol. 126 Issue 2 (2016), 394-421.

Abstract. Feminist analyses of gender concepts must avoid the inclusion problem, the fault of marginalizing or excluding some prima facie women. Sally Haslanger’s ‘ameliorative’ analysis of gender concepts seeks to do so by defining woman by reference to subordination. I argue that Haslanger’s analysis problematically marginalizes trans women, thereby failing to avoid the inclusion problem. I propose an improved ameliorative analysis that ensures the inclusion of trans women. This analysis yields ‘twin’ target concepts of woman, one concerning gender as class and the other concerning gender as identity, both of which I hold to be equally necessary for feminist aims. Continue reading…

 

Tiffany D. Joseph. “What Health Care Reform Means for Immigrants: Comparing the Affordable Care Act and Massachusetts Health Reforms.” Journal of Health Politics, Policy and Law Vol. 41, No. 1 (2016), 101-116.

Abstract. The 2010 Patient Protection and Affordable Care Act (ACA) was passed to provide more affordable health coverage to Americans beginning in 2014. Modeled after the 2006 Massachusetts health care reform, the ACA includes an individual mandate, Medicaid expansion, and health exchanges through which middle-income individuals can purchase coverage from private insurance companies. However, while the ACA provisions exclude all undocumented and some documented immigrants, Massachusetts uses state and hospital funds to extend coverage to these groups. This article examines the ACA reform using the Massachusetts reform as a comparative case study to outline how citizenship status influences individuals' coverage options under both policies. The article then briefly discusses other states that provide coverage to ACA-ineligible immigrants and the implications of uneven ACA implementation for immigrants and citizens nationwide. Continue reading…

 

Rippke et. al. “Timescales of transformational climate change adaptation in sub-Saharan African agriculture.” Nature climate change. Published online March 7, 2016.

Climate change is projected to constitute a significant threat to food security if no adaptation actions are taken. Transformation of agricultural systems, for example switching crop types or moving out of agriculture, is projected to be necessary in some cases. Howeer, little attention has been paid to the timing of these transformations. In this paper, the authors develop a temporal uncertainty framework to assess when and where cultivation of key crops in sub-Saharan Africa becomes unviable. Continue reading, or take a look at the BBC’s coverage (which includes comments from one of the co-authors).

 

R. Alta Charo. “On the Road (to a Cure?) — Stem-Cell Tourism and Lessons for Gene Editing.” New England Journal of Medicine Vol. 374, Issue 10 (2016), 901-903.

The author discusses the dangers of medical tourism in the field of regenerative medicine, which has been driven by the overwhelming media coverage of stem-cell research, arguing that it will take a concerted effort by researchers, journal editors, companies, investors, and the media to find the fine line between hope and hype and to keep explaining why the best way to find safe, effective cures is through the careful steps of clinical trials and treatment monitoring. Continue reading…

 

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Opinion

Bioethics Forum (The Hastings Center)

Chelsea Jack. “Biopolitics and Epigenetics: Q & A with Charles Dupras.” March 8, 2016.

In this inteview, Charles Dupras, a PhD candidate at the University of Montréal, discusses how to translate developments in the field of epigenetics into public policy initiatives. Continue reading…

 

The Conversation

Carey King. “How much can the next president influence the U.S. energy system?” March 3, 2016.

The author argues that the next US president will have relatively little influence on the development of the energy sector, but that he or she could have an important role to play educating U.S. citizens on energy’s relationship to the broader economy. Continue reading…

 

Practical ethics

Joshua Shepherd. “Alcohol, pregnancy, experts, and evidence.” March 3, 2016.

Commenting on the CDC’s recent advisory regarding the use of alcohol during or around pregnancy, the author suggests that the CDC was intentionally being overly cautious in order to counteract misinformation, and argues that the institutions we trust to deliver evidence-based advice ought not to reason in this way. Continue reading…

 

Benjamin Lange. “Should You Switch to an Altruistic Career?” March 8, 2016.

In an essay that was awarded second place in the Oxford Uehiro Prize in Practical Ethics graduate category, the author argues that we are (in most cases) justified in continuing to pursue the particular projects in which we are personally invested, instead of switching to more “altruistic” career paths. Continue reading…

 

Impact ethics

Lori Seller and Veronique Fraser. “The Unwilling Ethicist and Assisted Dying.” February 29, 2016.

The authors explore whether clinical ethicists should have the right to conscientiously object to ethics consultations for assisted dying. Continue reading…

 

The New York Times

Seth Stephens-Davidowitz. “The Return of the D.I.Y. Abortion.” March 5, 2016.

The author uses Google search data to argue that demand for self-induced abortion has risen to a disturbing level and that this demand is concentrated in areas where it is most difficult to get an abortion, closely tracking recent state-level crackdowns on abortion. Continue reading…

 

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