2015 Readings

"Genetics Hot Topics: Population-Base Screening for BRCA1 and BRCA2--Is it time to screen everyone?"

Dr. Mary-Claire King was honored with the Lasker Koshland Special Achievement Award Medical Science for her contributions to medical science and society, exemplified by her contributions to the discovery of the BRCA1 mutation.  BRCA1 and BRCA2 mutations cause a substantial increase in risk for  breast and ovarian cancer in women. In a recent article in JAMA, she advocates for population-based genetic screening of women for BRCA1 and BRCA2 mutations and suggests that such screening should be a routine part of clinical practice.

This “Genetics Hot Topics” will explore the benefits and risks of BRCA1/2 screening as part of routine healthcare for women.  This informal discussion will be facilitated by Jeffrey Botkin MD, MPH, Medical Ethics and Humanities Division Chief.  Background reading for this session is  “Population-Based Screening for BRCA1 and BRCA2: 2014 Lasker Award (JAMA 9/17/2014)."  Please join us!

"Fixed-The Science/Fiction of Human Enhancement": What Does it Mean to Enhance your Body?

As its title suggests, this new documentary addresses human capabilities, disabilities and the idea of being “fixed.”  The filmmakers follow the stories of a wide range of people whose bodies have been fixed-- or not fixed—by prosthetics, surgery, and other enhancements.  Prominent scholars from disability studies, medical engineering, robotics, transhumanism, and many other fields that question the limits and capacities of the human body offer their perspectives.   Come to watch this striking film and discuss such questions as:  Where does the body begin and end?  What is permissible enhancement of the human body?  What might be the social effects of widely available and/or encouraged “fixes”? 

"Intimacies of Illness: The Ethics of Self-Disclosure" with Kimberly Myers, PhD

Kimberly Myers, Ph.D., associate professor of Humanities and English at Penn State Hershey College of Medicine, and member at the Doctors Kienle Center for Humanistic Medicine, will facilitate a special Evening Ethics Discussion in conjunction with her visit to the University of Utah for the opening of the traveling art exhibit,"Edges of Light: Images of Breast Transformation. This exhibit includes photographs by Wendy Palmer and verbal reflections by Kimberly Myers and will be shown at the Eccles Health Science Library April 13-May 15.

 People often feel compelled to talk about their illness experiences.  Among the questions to be discussed include, why do we feel the need to do this?  What are some of the ethical issues involved with self-disclosure?  Should doctors ever tell patients about their own personal illnesses?  How might this affect the doctor-patient relationship?

 As background reading to prepare for this discussion, we ask that you read the short article in the New England Journal of Medicine, “Too Much Information—the Ethics of Self-Disclosure,” by Kelly A. Curran, M.D.  (July 3, 2014)

 In addition, Dr. Myers’ book, Illness in the Academy: A Collection of Pathographies by Academics ,(Purdue University Press, 2007) will be available for purchase and signing at this Evening Ethics.

"Unilateral Physician DNAR Decisions in Pediatrics" with 2015 David Green Memorial Speaker, Mark Mercurio, MD, MA

Decisions about resuscitation are usually made by physicians in consultation with patient, family members, and other staff. Are there ever situations where it is ethically permissible for a physician to make a decision not to attempt resuscitation, without consulting or reaching agreement with the patient or the patient's family?  If so, what would be the justification for bypassing patient autonomy--or in the case of a pediatric patient, parental authority?

The discussion will begin with an article addressing the question in pediatrics, but easily extends to adult patients, and the principles utilized and the ethical and practical considerations are directly applicable to any patient.  Background reading for this session is an article by Mark Mercurio, MD, MA, Peter D. Murray, MD, and Ian Gross, MD, MA:  “Unilateral Pediatric “Do Not Attempt Resuscitation”Orders: The Pros, the Cons, and a Proposed Approach.” (Pediatrics, Volume 133, Supplement 1, February 2014)

Dr. Mercurio, our 2015 David Green Memorial Speaker, is Director of the Program for Biomedical Ethics and the Yale Pediatric Ethics Program, Professor of Pediatrics at Yale University School of Medicine, and an attending neonatologist at Yale-New Haven Children’s Hospital. He will facilitate this Evening Ethics Discussion.

In addition, Dr. Mercurio will present the David Green Memorial Lectureship at Pediatric Grand Rounds on Thursday, May 14, 2015, 8:00am-9:00 a.m., 3rd floor Primary Children’s Hospital: Ethical decision-making in the setting of extreme prematurity.” All are welcome.

"The Ethics of Telemedicine"

Members of the Center for Law and Biomedical Sciences at the College of Law met with the Telemedicine team at the University of Utah hospital, and realized that there are many overlapping ethical and legal topics that interest both groups. After a great conversation, the two groups decided to collaborate in the future, whenever possible. To that end, the Division of Medical Ethics and Humanities is hosting an Evening Ethics on the ethical issues surrounding the burgeoning field of Telemedicine.  This event will include members of the Telemedicine program at the U, and we invite you to join us.

The Telemedicine service at the University of Utah, also known as "telehealth," is driven by patient demand. It is offered through eleven (and counting!) different medical services, such as cardiology, neurology, rehab, and transplant. The services supported include telephone consultations, emails between providers and patients, electronic medical records, digital radiology services, and pager and cell phone communications among others.

 Utah is in a unique and progressive position when it comes to the practice of telemedicine, as it is the first state to have passed the Interstate Medical Licensure Compact. This law is meant to streamline physician licensure across state lines and therefore facilitate the expansion of telemedicine practices. The development of different forms of telemedicine presents fascinating ethical questions. Among some of the questions that will be addressed at the Evening Ethics are: 1) How does telemedicine increases access to health care for our rural population in the Mountain West? 2) How does traditional telemedicine impact the relationship between physicians and patients, both negatively and positively? 3) What are the privacy and confidentiality concerns, and how can they be overcome? and 4) How should research be conducted using patient data from telemedicine conversations?

This Evening Ethics Discussion will be facilitated by DMEH faculty member, Teneille Brown, and has no preparatory background reading. As always, the Evening Ethics conversation will be casual, and we invite and welcome people with diverse backgrounds and perspectives.

 "Intersex-The blurred lines of biological sex” with Jeanne Nollman

 What happens when a baby is born and doctors aren’t sure whether it is a boy or a girl? Join Jeanne Nollman, intersex educator/advocate/media personality to discuss Malta’s GENDER IDENTITY, GENDER EXPRESSION AND SEX CHARACTERISTICS ACT. This law is a landmark case that protects an intersex individuals primary right to self-determination, body integrity, and personal dignity. 

The discussion will revolve around the new groundbreaking laws in the country of Malta for children born with Disorders of Sex Development (DSD). It will also include more general discussion of intersex issues. Among our questions for discussion: Can we raise a child without a gender? What impact will this have on the child, family and society? What problems may occur, and what problems might be solved? What would it look like in the U.S. if we had the same laws? 

As background reading to prepare for this discussion, the following articles may be helpful: 

https://aiclegal.files.WordPress.com/2012/10/interact_ms--updated.pdf 

http://aiclegal.org/WordPress/wp--‐content/uploads/2012/10/wish--‐parents--‐FIN.pdf 

http://scholarship.law.berkeley.edu/cgi/viewcontent.cgi?article=1248&context=bglj 

Jeanne Nollman was a board member and past President for the largest intersex support group in the world, AIS-DSD (Androgen Insensitivity Syndrome-Disorders of Sex Development) for 7 years. She has spent the last 10 years educating doctors, lawyers, therapists, social workers, the criminal justice system, and students on what intersex is and how people with DSD are impacted physically and psychologically.

THIS EVENING ETHICS HAS BEEN CANCELED: "The ethics of Video Remote Sign Language Interpreter Use in Medical Settings," with Theresa Blankmeyer Burke, PhD

The impact of the Americans with Disabilities Act on the provision of American Sign Language interpreters in medical settings, plus the national shortage of qualified signed language interpreters has resulted in the increase of video remote interpreting in health care settings. Last summer, a well-publicized case of Margaret Weiss, a pregnant deaf woman seeking to have a live interpreter on site during the birth of her child was denied, with the court upholding the hospital's decision to use video remote interpreting for the birth. This Evening Ethics session will look at the ethical considerations involved in video remote interpreting in health care settings: Should health care always be interpreted by on-site signed language interpreters? Are signed language interpreters fungible? What ethical issues should health care providers be aware of when using signed language interpreters? What ethical issues come into play in medical settings with deaf or hard of hearing individuals who do not use a signed language? To focus our conversation, we will look at the case of Margaret Weiss, using the following documents as a guide:

 National Association of the Deaf Position Statement on Video Remote Interpreting in Hospitals

http://nad.org/issues/technology/vri/position-statement-hospitals

 News media reports of the case of Margaret Weiss (this has additional links at the bottom)

http://allnurses.com/ob-gyn-nursing/deaf-and-pregnant-999579.html

 ADA Statement on Effective Communication

http://www.ada.gov/effective-comm.htm

 Teresa Blankmeyer Burke, Ph.D. is an Associate Professor of Philosophy at Gallaudet University. Her research focuses on the intersection between bioethics, disability, and the deaf community. She is currently a Visiting Scholar in the University of New Mexico's Signed Language Interpreting Program, where she is writing a monograph on ethics and signed language interpreting. She also serves as bioethics advisor to the World Federation of the Deaf, and the National Association of the Deaf (U.S.A.)

"Death with Dignity Laws: What do they Mean for Physicians?" with Linda Ganzini, MD, MPH

Anticipating a fuller presentation of data the following morning at Internal Medicine Grand Rounds, Oregon’s principal researcher on Physician Assisted Suicide, Linda Ganzini, MD, MPH, professor of Psychiatry and Medicine, Oregon  Health and Science University (OHSU)will introduce an open discussion of  what a Death With Dignity Act should and should not require of physicians, how the law might be perceived by physicians, and what impact physicians might expect about the effects on themselves of legally assisting a patient to die.  Background reading for this discussion include two articles by Linda Ganzini, MD, Steven K Dobscha, MD, Ronald T. Heintz, MD, and Nancy Press, PhD,  “Oregon Physician’s Perceptions of Patients Who Request Assisted Suicide and Their Families,” (2003), J of Palliative Medicine; 6:3, and “Oregon Physicians’ Responses to Requests for Assisted Suicide: A Qualitative Study,” (2004), J of Palliative Medicine, 7:3.

Continuing the “Native Voices” Conversation in Utah: How can professionals trained in Western medicine work with Native communities to improve the health status of members?**

**This Evening Ethics has been developed in collaboration with the Office of Health Equity and Inclusion

The voices of contemporary American Indians featured this fall in a traveling exhibit at the Eccles Health Sciences Library raise significant ethical issues for health-care professionals and students.  As the exhibit title suggests--"Native Voices:  Native Peoples' Concepts of Health and Illness"—these issues are defined in the contexts of Native People's cultural beliefs and values.  So how can professionals trained in Western medicine work with Native communities to improve the health status of members?  What are the best ways to address health disparities that encompass economic, racial, and historical concerns? And what has been learned so far in outreach programs offered through various departments of the University of Utah health sciences center?

Featured at our discussion will be three professionals with expertise in health disparities.  Ana Maria Lopez, MD, MPH, is associate vice president health equity and inclusion for University of Utah Health System.  An oncologist, Dr. Lopez also directs Cancer Health Equity at Huntsman Cancer Institute (HCI).  Phyllis Pettit Nassi, M.S.W., Manager Special Populations at HCI, oversees Native American outreach.  She is enrolled in the Otoe/Missouri Tribe and is a member of the Cherokee Nation.  Michael Lei, manager of Global Outreach for the Moran Eye Center, oversees the delivery of ophthalmology care on Utah's reservations and has sixteen years' experience working with the Navajo Nation. 

To begin our discussion, we'll consider how tribal consultation serves as an ethical model for engagement with Native populations. The process is guided by respect for autonomy, truthfulness, fairness, justice, and beneficence.   We will look at how the University might respond to Governor Herbert's 2014 order for state agencies to establish tribal consultation policies.

Two articles are suggested background reading: 

 "Addressing disparities in the health of American Indian and Alaska Native People:  The importance of improved public health data" --  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4035867/.

 “Toward Genuine Tribal Consultation in the 21st Century” at  http://heinonline.org/HOL/LandingPage?handle=hein.journals/umijlr46&div=15&id=&page=

“When a patient requests a white doctor”: Where do we draw the line on allowing patient requests?

What should clinicians do when patients—or families of patients—request that a doctor of a particular race, ethnic group, religion, gender, gender preference, or any “type,” provide -–or not provide—medical care for them? Clearly, these situations reflect a clash of fundamental values. Do we grant these requests out of a respect for patient choice, or do we reject them as medically irrelevant and offensive? KL Reynolds, JD Cowden, JP Brosco, and JD Lantos discuss various ways to think about, analyze, and respond to these sorts of requests in “When a Family Requests a White Doctor”, We ask that you read this article and bring your questions, concerns, experiences, and thoughtful approaches on how to proceed in similar cases, to share at this Evening Ethics discussion.

This program is approved for 1-½ hours of CME credit.

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