Evening Ethics Discussions 2016

November 14: “Informed Consent: The Importance of the Havasupai Indian Tribal Case”
October 27:GENETICS HOT TOPICS: "Ethical Issues in Gene Editing"
October 17: "What Do You Do When You are Being Recorded?"
September 20:“Gallows Humor: Laughing When It’s Not Funny (Or Is It)?”
August 30: "Melancholia Revisited: Humoral Psychology in Shakespeare’s Plays," with Mark Matheson, D.Phil
June 13: "Perverse Incentives in Care: Exploring the ways Medicare reimbursement creates injustice or maleficence"
May 3: "Opiates for the Masses? Ethical Challenges in Opioid Prescribing and the Management of Chronic Pain"
April 26: “Virtue Ethics and Decisions to Limit Potentially Life-Sustaining Therapies," with Larry Cripe, MD
April 13: “Against Informed Consent? The case for paternalism in genomic newborn screening,” with Jeff Brosco, MD, PhD, 2016 David Green Memorial Speaker
March 23: “Using data to stigmatize: What are our collective responsibilities?” with Wylie Burke, MD, PhD, 2016 Max and Sara Cowan Memorial Speaker
February 23: Genetics Hot Topics:“Cancer Moonshot, Precision Medicine Initiative, 21st Century Cures...: What's data got to do with it?,” with Bob Cook-Deegan, MD
January 20: "The ethics of Video Remote Sign Language Interpreter Use in Medical Settings," with Theresa Blankmeyer Burke, PhD (This is re-scheduled from a 2015 cancelation)
January 13: "What Could Go Wrong?--Video Games and Health Care Interventions"

"What Could Go Wrong?--Video Games and Health Care Interventions"

Why might game technology be appropriate to deliver Health Care interventions? What are some ethical considerations for using game technology in Health Care interventions? How might Video Games be used to make moral demands of players, to encourage players to reflect on their values, and to support patients in value-laden Health Care situations? How can gaming promote value clarification about different genetic testing options?

Please join us for what is sure to be a lively discussion co-facilitated by Erin Rothwell, PhD, and Jose Zagal. Ethical Reasoning and Reflection as Supported by Single-Player Video Games by Jose Zagal is recommended as background reading for this session. Please contact Linda Carr-Lee Faix at linda.carrlee@hsc.utah.edu for a copy of this article.

"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.)

Genetics Hot Topics: “Cancer Moonshot, Precision Medicine Initiative, 21st Century Cures...: What's data got to do with it?” with Bob Cook-Deegan, MD

Robert Cook-Deegan is a research professor at Duke University in the Sanford School of Public Policy, with secondary appointments in Internal Medicine (School of Medicine), and Biology (Trinity College of Arts & Sciences). He was the founding director for Genome Ethics, Law & Policy in Duke’s Institute for Genome Sciences & Policy from July 2002 through December 2012. He is the author of The Gene Wars: Science, Politics, and the Human Genome and an author on over 250 articles. Dr. Cook-Deegan’s areas of expertise include genomics and intellectual property, history of genomics, global health, science and health policy, and health research policy. His current research focuses on policy implications of genomics, bioethics, intellectual property, and innovation.
This Genetics Hot Topics, collaboratively presented with UCEER, will explore “the squabbles in building a medical information commons: who owns the data? Who has obligations to share with whom.” Background reading materials can be found on the UCEER website including: https://www.whitehouse.gov/the-press-office/2015/01/30/fact-sheet-president-obama-s-precision-medicine-initiative

“Using data to stigmatize: What are our collective responsibilities?” with Wylie Burke, MD, PhD, 2016 Max and Sara Cowan Memorial Speaker

A person’s genome has been described as an “instruction manual” that can tell each of us about the health risks we face so that our medical care can be individualized. The concept is appealing – and makes intuitive sense because we all observe individual differences in health that are not readily explained. But more than a decade after completion of the Human Genome Project, we see that the reality is more complex and perhaps more prosaic. As background reading for this discussion, please read “Can research on the genetics of intelligence be ‘socially neutral’” by D. Roberts. (Hastings Cent Rep 2015; 45 (No.5):S52-54.) For an example of questionable data interpretation, you may also like to read “A review of intelligence GWAS hits: Their relationship to country IQ and the issue of special autocorrelation,” by D. Piffer. (Intelligence 2015;53: 43-50.) For copies of both articles, please contact Linda Carr-Lee Faix at linda.carrlee@hsc.utah.edu

“Against Informed Consent? The case for paternalism in genomic newborn screening,” with Jeff Brosco, MD, PhD, 2016 David Green Memorial Speaker

State newborn screening programs are among the most successful public health initiatives of the last 100 years. Thousands of lives have been saved, and tens of thousands have avoided significant morbidity because of early detection and treatment. The universal approach of these public health programs has led to reductions in health disparities among underserved populations. Whole genome (and exome) sequencing brings both the promise of expanding screening and the peril of dismantling the public health structure of newborn screening programs. This session begins with a brief history of newborn screening and leads to a discussion of the ethical and policy dilemmas faced by clinicians, researchers, and the broader public. As choices for genetic testing in the newborn period proliferate, what are the best ways to respect autonomy, safeguard infant lives, and optimize family and child well-being? Please read the AAP guidelines on genetic testing in children for this session: Ethical and Policy Issues in Genetic Testing and Screening of Children.

“Virtue Ethics and Decisions to Limit Potentially Life-Sustaining Therapies," with Larry Cripe, MD

Decisions to limit life-prolonging treatment (DLT), a type of shared decision making, requires that patients tell physicians their preferences for end-of-life care and that patients be told when physicians have decided to limit treatment. In a recent study (Winkler et al., 2009) nearly 75% of terminally ill cancer patients told doctors their intubation, ICU transfer, and chemotherapy preferences, but only 47% of those patients were notified of their physicians' decisions—notably, those who agreed with doctors to opt for palliative care. When patients wanted life-prolonging treatment, communication between patients and physicians was "impaired." Larry Cripe, Associate Professor of Medicine, Division of Hematology and Oncology, Indiana University School of Medicine and founding co-director of Simon Cancer Center’s Palliative Care Research and Education Program, suggests that we look carefully at the emphasis medicine places on truthfulness. Dr. Cripe suggests that although terminally ill patients want "medical experts" to tell them truthfully about prognoses and treatment plans, they do not necessarily want to share in decision making, but rather, want trusted physicians to be with them as they seek "a shared meaning of hope" grounded in compassion.

Please join us to discuss these and other questions: Are we witnessing with DLT (decisions to limit life-prolonging treatment) a change of paradigm in end-of-life care, a return to a paternalistic doctor-patient relationship? What are the ethical ramifications of DLT? What role might narrative play in training physicians how to better communicate about end-of-life? Could narrative help ensure that DLT is a fair and just process for all patients?

Please read two, short articles to prepare for this discussion: Winkler, EC et al. Patient involvement in decisions to limit treatment: The crucial role of agreement between physician and patient." (J of Clinical Oncology 27: 2225-2230, 2009) and Cripe, LD. Trustworthiness. (J of Clinical Oncology 29: 3483-3486, 2011.)

"Opiates for the Masses? Ethical Challenges in Opioid Prescribing and the Management of Chronic Pain"

The United States currently faces an epidemic of opioid dependence and prescription drug overdose, fueled by increased prescribing of opioids by health care professionals for chronic pain management. Guidelines for the management of chronic pain recently published by the Centers for Disease Control are designed to address this public health emergency. However, these guidelines may seem to inadequately respect the importance of aggressively treating patients’ pain, and do not address all of the challenges faced by clinicians in negotiating pain management strategies with their patients. In this session we will briefly review data about the growing epidemic of opioid dependence and prescription drug overdose, the aforementioned CDC guidelines, ethical considerations about pain management with and without opioids, and physician responsibility in follow-up care. These considerations, we hope, should provide a foundation for a discussion of physicians’ obligations regarding opioid prescribing, prescription monitoring, and pain management in complex clinical cases. DMEH members Peggy Battin, MFA, PhD, and Brent Kious, MD, PhD, will facilitate.

As background reading for this discussion, see “Sometimes Pain is a Puzzle that Can’t be Solved” (NY Times, April 11, 2016), “Zero Pain is Not the Goal” (JAMA, March 15, 2016), and “Recognizing Pain Management as a Human Right: A First Step” (July, Anesthesia and Analgesia, 2007). Please contact Linda Carr-Lee Faix at linda.carrlee@hsc.utah.edu if you have any difficulty accessing these articles.

"Perverse Incentives in Care: Exploring the ways Medicare reimbursement creates injustice or maleficence"

In “Denying Death,” (57 Ariz. L. Rev. 977 (2015), Teneille Brown, JD, argues that " Terminal cancer patients are being kept in the dark about the purpose of their care. Patients undergo expensive and painful interventions because they are holding out hope for a cure, even when their physicians know that a cure is very unlikely. The current Medicare reimbursement system encourages this false hope by incentivizing physicians to medicate and operate on patients, rather than to talk about whether or why to do these things. Our culture also encourages this false hope by treating cancer as a war that must be won. Whatever their wishes for their death, a substantial number of patients are not given a chance to articulate them, because nobody asks. This situation is a disaster on many levels.” Professor Brown explores the reasons for this complex phenomenon — medical, psychological, and legal— and concludes her article with ten legal mechanisms that could be used to cut against this current state of affairs, some of them already being proposed by CMS. Evening Ethics Discussion will seek provide background on these problems and seek your thoughtful feedback on these and other possible solutions to this problem. For background preparation, in addition to Professor Brown’s article, we provide an optional reading, "How Medicare’s Payment Cuts For Cancer Chemotherapy Drugs Changed Patterns Of Treatment" by Mireille Jacobson, et.al. (Health Affairs 29, No. 7 (2010): 1394–1402 )

"Melancholia Revisited: Humoral Psychology in Shakespeare’s Plays," with Mark Matheson, D.Phil In collaboration with the Eccles Health Sciences Library

How do we understand human character? Do we still think of individuals as representative of a “type”? What are our explanations for mental illness? How do our answers to these questions affect our human relationships and professional practice? This ethics discussion will coincide with a National Library of Medicine exhibit at the Eccles Health Sciences Library called “’And There’s the Humor of It’: Shakespeare and the Four Humors.” It’s curated by Joan Gregory, and it will be available for us to visit. Shakespeare and his Renaissance contemporaries inherited humoral psychology from the classical period, and it served asn explanatory system for human character and conduct. The residues of this system remain in our language today, as when we speak of a certain person as “melancholy,” “sanguine,” or “phlegmatic.” Shakespeare also had other means of understanding individual character and mental illness, and we’ll discuss some of these at our gathering. Mark Matheson, D. Phil, writes, “I look forward to hearing your evaluations of humoral psychology from the perspective of modern medicine—and your thoughts on whether some of the assumptions underlying this system (though not the system itself) remain active today.” (There is no background reading for this session.)

For a description of the exhibit, see https://www.nlm.nih.gov/hmd/about/exhibition/travelingexhibitions/pdf/humorsprinfo.pdf

“Gallows Humor: Laughing When It’s Not Funny (Or Is It)?”

Facilitated by Gretchen Case, PhD and Phil Baese, MD

Why would anyone find the gallows funny? This brand of humor—joking in the face of death, danger, fear, hopelessness—is common in medical settings. During this Evening Ethics, we will discuss why we laugh at un-funny moments, reflect on how and when such joking is appropriate, and think through some of our own experiences with gallows humor in medicine along with recent examples that have garnered widespread attention. Background reading for this session is “Gallows Humor in Medicine” by Katie Watson. (Hastings Center Report, 41, No. 5, (2011), p 37-45)

"What Do You Do When You are Being Recorded?"

With today’s cell phones, the ability to record is ubiquitous. Whether deliberately or accidentally, patients have begun recording their encounters with medical care. In at least one case, the result has been litigation when the recording revealed quite insulting comments about the patient. What if your patients want to record you? What if you suspect that your patients are recording you but haven’t asked your permission? Does patient recording violate your privacy? The privacy of others who might be present? What other ethical issues does recording raise? How should health care providers think about this new technology and its potential impact on their relationships with their patients? Please join us for discussion of these issues. Two background readings to prepare for this discussion are: “ Why Doctors Should Audio Record Patient Encounters, “ by Craig Klugman and “Ethical Implications of Patients and Families Secretly Recording Conversations With Physicians,” by M. Rodriguez et.al.

GENETICS HOT TOPICS: "Ethical Issues in Gene Editing"

An exciting and powerful new technology termed CRISPR-Cas9 provides a range of opportunities for biomedical science and for the treatment of genetic conditions. But this tool also presents a number of serious ethical concerns in a number of different domains. CRISPR-Cas9 enables gene editing in whole tissues, reproductive cells, stem cells, and embryos. Accordingly, the makeup of whole organisms can be altered to add or subtract genes to study the effects of those genes, but also to custom design microorganisms, plants, animals, and even human embryos to serve various human projects. In conjunction with tools such as “gene drives,” CRISPR-Cas9 could be used to alter or eliminate whole species from local or global environments, such as, for example, the elimination of mosquitoes for the purpose of preventing the burdens of mosquito-born diseases.

In this Genetics Hot Topics discussion, a panel will provide a brief overview of this technology, the prospects for its various uses, and the key ethical issues they raise. We will then foster discussion of several questions:

What are the ethical concerns with gene editing in humans and human embryos?
What are the opportunities and fears with the genetic manipulation of microorganisms, plants and animals and their release into the environment?
What should scientists, ethicists, policy makers, and concerned citizens do to address these ethical concerns?

Panel members include:

Dana Carroll, PhD, Professor of Biochemistry
David Grunwald, PhD, Professor of Human Genetics
Jeffrey Botkin, MD, MPH, Professor of Pediatrics

Readings for this session:

(email Linda.carrlee@hsc.utah.edu for full version)

“Informed Consent: The Importance of the Havasupai Indian Tribal Case”

The play, “Informed Consent,” by Deborah Zoe Laufer, which will be read on November 18th, 7:30pm at the University of Utah College of Law, is a fictionalized version of the Havasupai Indian Tribal Case that has been widely discussed in the field of research ethics and regulation. The case involved academic researchers who acquired information and blood samples from tribal members for research on diabetes. However, the specimens were used by other investigators for sensitive studies including mental health research and for projects that assessed the ancient historical migration patterns of the tribe. Both of the secondary research uses were conducted without the specific consent of tribal members. This Evening Ethics, in anticipation of the play later in the week, will invite discussion of the controversial aspects of this case and the current status of regulations governing genetic research with biospecimens. Moderators of the session will be two medical students, Lily Boettcher and Anna Cassell, and Dr. Jeffrey Botkin.