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Author Archive: Blog Editor

04/08/2018

Building a Trustworthy Precision Health Research Enterprise

This editorial also appears in the April 2018 edition of the American Journal of Bioethics

by David Magnus, PhD and Jason N. Batten, MA

This issue of the American Journal of Bioethics features an article on the importance of building trusting relationships for the successful creation of research repositories that include biospecimens and data records from under-represented ethnic and racial groups in the U.S. Other researchers have made note of this challenge (including most of this research group in relation to learning health system research). This editorial will focus on two important points raised by Kraft et al. and discussed in the outstanding set of commentaries.…

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04/08/2018

Artist’s Blurb- April AJOB Cover

by Natalie Yoshioka, BA
I spent the most time trying to find an exciting visual metaphor that would best represent the recommendation of building trust within a community over an extended period of time. I didn’t want to rely on solutions that were too obvious or simplistic to describe the article themes. Precision medicine is often a big data problem, where researchers are trying to find a solution within a depth of patient data and information. This drew me to the idea of a researcher trying to find a fish within a whirlpool, which loosely represents large amounts of genetic or patient medical information.…

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03/18/2018

From Frankenstein to Hawking: Which is the Real Face of Science?

by Jonathan D. Moreno, Ph.D.

If Stephen Hawking knew that he was facing his last days he would surely have been amused that his death would come on Albert Einstein’s birthday and almost exactly two hundred years after the publication of Mary Shelley’s Frankenstein. As a matter of character and reputation the imaginary Victor and the richly real Stephen couldn’t have been more different, but together they represent our Janus-Headed modern view of science and scientists.

Hawking was the bright, shining face of creative genius and human intellectual flourishing, gifted with both an immense imagination and a startling, vulnerable humanity.  He was no less an explorer than Christopher Columbus or John Glenn, but his exploration came in the most human way possible, through his mind rather than mere physical mobility. …

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02/22/2018

Artist’s Note-March 2018

Original art and artist’s blurbs are presented in collaboration with the students of the University of Illinois Chicago program in Biomedical Visualization. 
by Eleanor Milman
When I learned that I would be creating an illustration on pediatric medical decision making, I immediately wanted to work from the perspective of a child. Grappling with heavy topics such as informed consent and patient autonomy is difficult for adults and so must be especially daunting for children and their parents.

It was important that the illustration include elements from both the childlike world of imagination and wonder, and the less innocent world of medical decision making.

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This entry was posted in Featured Posts, Informed Consent, Media, Pediatrics. Posted by Blog Editor. Bookmark the permalink.

02/22/2018

Pediatric Participation in Medical Decision Making: Optimized or Personalized?

This post also appears in the March 2018 issue of the American Journal of Bioethics

by Maya Sabatello, Annie Janvier, Eduard Verhagen, Wynne Morrison & John Lantos

Olszewski and Goldkind argue that children’s participation in medical decision making should be “the default position” and that a stepwise approach is needed to ensure that children are routinely given a voice. They suggest a systematic approach for optimizing such pediatric participation and apply it to two cases concerning terminally ill children: Mary, a 15-year-old girl, and Joe, a 7-year-old boy. The style of argument highlights a generalized problem in bioethical analyses. Authors’ framing of case vignettes is often stylized to illustrate the authors’ central arguments and to support their conclusions.…

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This entry was posted in Editorial-AJOB, End of Life Care, Featured Posts, Pediatrics and tagged . Posted by Blog Editor. Bookmark the permalink.

02/13/2018

Artist’s Note

by Kate Zumach

There is an interesting trend in quantifying our everyday lives, turning tasks into data. It begs the question, what happens when we quantify our relationships? From conceptual sketches to the final illustration, there was a lot of emphasis on the topics of the quantified self movement. The viewer is shown autonomous characters who are releasing data into a neverending grid that is organizing and sorting this information. It also introduces the viewer to the third party in the relationship: technology. This illustration depicts the flow of data from each individual and the relationship between them. We now have the power to rank and record aspects of our relationships that was never before possible.…

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02/01/2018

In Memoriam: Aviva Lynn Katz, M.D., M.A., FACS, FAAP

In Memoriam: Aviva Lynn Katz
by Margaret R. Moon, MD, MPH

Aviva Katz, MD, MA, passed away on January 17, 2018.  A strong and insightful voice for the ethical care of children and families, she was a shining light in the worlds of pediatric surgery and bioethics.

Her educational and academic accomplishments took her to the pinnacle of pediatric ethics leadership.  Dr. Katz was born in Brooklyn, graduated summa cum laude from CUNY-City College, and received her MD degree from

Image from Center for Bioethics & Health Law, University of Pittsburgh.

Mount Sinai School of Medicine (AOA). She later completed a Master of Arts degree in bioethics from the University of Pittsburgh.…

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01/17/2018

Appeal for Principle before Rule, and Uniform Application of Rules: A Case of Psychiatric Ethics

by Bandy X. Lee, M.D., M.Div.

I am the editor of The Dangerous Case of Donald Trump: 27 Psychiatrists and Mental Health Experts Assess a President (Macmillan, 2017), which is intended as a public service.  Even all the royalties are going into a fund for public good.  Yet there has been harsh pushback, with Dr. Jeffrey Lieberman leading the effort, criticizing the book for making a public diagnosis (see, for example, his commentary in Psychiatric News.

Yet this is based on several misconceptions.  Dr. Lieberman does not seem to recognize, for example, that we do not diagnose the president in the book (this is a common misunderstanding for those who have not read the book).  …

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This entry was posted in Ethics, Featured Posts, Politics, Privacy, Psychiatric Ethics, Public Health. Posted by Blog Editor. Bookmark the permalink.

01/11/2018

Managing Expectations: Delivering the Worst News in the Best Way?

This post also appears in the January 2018 issue of the American Journal of Bioethics

by Alyssa M. Burgart & David Magnus

In this issue, Weiss and Fiester’s (2018) “From ‘Longshot’ to ‘Fantasy’: Obligations to Patients and Families When Last-Ditch Medical Efforts Fail” calls attention to the weight of clinician word choice when discussing interventions in the pediatric population. Their work focuses on communication in a highly narrow slice of intervention options, from unlikely to work therapies to impossible ones. Regardless of a therapy’s low probability of success, physicians and parents suffer from forms of misconception: physicians tend to be overly optimistic in both their prognostic estimates and in their disclosure of illness severity, and parents tend to be highly likely to believe that their child is the one of many who will benefit from therapy.…

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This entry was posted in Clinical Ethics, Editorial-AJOB, Featured Posts, Pediatrics. Posted by Blog Editor. Bookmark the permalink.

12/04/2017

The Idea of a “Standard View” of Informed Consent

This editorial is re-posted from the December 2017 issue of the American Journal of Bioethics. You can read more on this topic through the target article and open peer commentaries

by Tom L. Beauchamp, Ph.D.

The article in this issue of AJOB titled “Reframing Consent for Clinical Research: A Function-Based Approach” is a fresh and engaging way of thinking about how to handle several conceptual and moral problems about consent in clinical research. At times the authors seem entirely concerned with problems of informed consent, while at other times they are concerned with other forms of consent.…

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This entry was posted in Editorial-AJOB, Featured Posts, Informed Consent, Research Ethics and tagged . Posted by Blog Editor. Bookmark the permalink.