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Funded by Patient-Centered Outcomes Research Institute (PCORI)

Funding Years: 2013 - 2015.

Every year, more than 100,000 patients start dialysis to treat kidney failure in the United States. Two types of dialysis are available: hemodialysis (HD) and peritoneal dialysis (PD). HD is done with a machine in a dialysis clinic. PD can be done at home, if the patient or family is willing to perform his or her dialysis treatments. In general, patients survive as long on HD as they do on PD. Based on specific clinical parameters and a patient’s needs, one of the two dialysis types is usually going to be a better fit for a given patient. For example, older patients may not want to be responsible for performing their own treatment, and HD may be a better fit for them. On the other hand, PD may be a better choice for patients who want to be able to travel. The challenge for patients with kidney failure is to identify the dialysis type that best fits their lifestyle. However, there is very little information regarding factors that are important to patients starting dialysis, and often patients choose a dialysis type without fully understanding how it will impact their lives. Patients and their families need more information to be able to make better decisions. PD use is much lower in the United States than in other countries, perhaps reflecting the fact that many patients are not given appropriate information regarding this type of dialysis. Given recent financial pressure on kidney doctors to treat more patients with PD, it is even more important that patients receive better information when making a decision regarding dialysis type. The goal of this study is to identify factors that matter the most to patients with kidney disease and study how they are impacted by different types of dialysis. To understand what is most important to them, we will interview more than 130 patients with kidney disease, some before and some after they start dialysis. We will compare factors reported as important across different types of patients; for example, among men and women, or among those who work outside of the house and those who do not. Using the infrastructure of an existing study of more than 6,800 dialysis patients, we will compare factors identified during the interviews between patients treated with HD and PD. Based on these results, we will develop a Web site presenting information on kidney disease and questions on personal preferences, which will help patients understand which dialysis type is better for them. Results from our study will provide practical information regarding the choice of dialysis type to patients with kidney disease and their families. Patients who are better informed will be able to identify and choose the best dialysis type for their lifestyle and needs. Providing scientific evidence to help patients in their decision process is of great importance, especially at such a stressful time in their lives.

PI(s): Angela Fagerlin, Laurie Lachance, Yi Li, Julie Wright

CBSSM Postdoctoral Research Fellow, Kayte Spector-Bagdady presented the keynote address  at the 2015 International Association of Clinical Research Nurses (IACRN) 7th Annual Conference. Her talk was entitled, “Why We've Always Needed Ethics: Grants, Research, and the Law."

2015 CBSSM Research Colloquium and Bishop Lecture (Lawrence O. Gostin, J.D., LL.D Hon.)

Tue, March 17, 2015, 8:30am to 4:00pm
Location: 
Alumni Center, 200 Fletcher St., Ann Arbor, MI

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Tuesday, March 17, 2015 at the Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  Lawrence O. Gostin, J.D., LL.D (Hon.) presented the Bishop Lecture with a talk entitled: "Law, Ethics, and Public Health in the Vaccination Debates: Politics of the Measles Outbreak."

Lawrence Gostin is University Professor, Georgetown University’s highest academic rank conferred by the University President. Prof. Gostin directs the O’Neill Institute for National and Global Health Law and is the Founding O’Neill Chair in Global Health Law. He is Professor of Medicine at Georgetown University, Professor of Public Health at the Johns Hopkins University, and Director of the Center for Law & the Public’s Health at Johns Hopkins and Georgetown Universities. Prof. Gostin is also the Director of the World Health Organization Collaborating Center on Public Health Law & Human Rights.

The 2015 Research Colloquium Presentation Schedule:

  • 8:30 AM -- Check in & refreshments
  • 9:00 AM -- Welcome
  • 9:15 AM -- Aaron Scherer, PhD, CBSSM Postdoctoral Fellow: "Elephants, Donkeys, and Medicine: Political Differences in Health Risk Perceptions and Adherence to Medical Recommendations"
  • 9:45 AM -- Natalie Bartnik, MPH, Research Associate, HBHE Genetics Research Group, UM School of Public Health: "Why, how and when oncologists disclose genome sequencing results in clinical practice"
  • 10:15 AM -- Michele Gornick, PhD, MICHR PTSP Postdoctoral Fellow, VA HSRD Fellow & CBSSM Research Investigator: "Information and deliberation make a difference: The public’s preferences for the return of secondary genomic findings"
  • 10:45 AM -- Break
  • 11:00 AM -- Lawrence O. Gostin, JD, LLD (Hon.), 2015 Bishop Lecture in Bioethics: "Law, Ethics, and Public Health in the Vaccination Debates: Politics of the Measles Outbreak"
  • 12:30 PM -- Lunch
  • 1:30 PM -- Stephanie Kukora, MD and Nathan Gollehon, MD, Fellows, Division of Neonatal-Perinatal Medicine, Department of Pediatrics, UM Mott Children’s Hospital: "Epidemiology of outpatient prenatal consultation: implications for decision-making and perinatal outcomes"
  • 2:00 PM -- Minnie Bluhm, PhD, MPH, Assistant Professor, School of Health Sciences, Eastern Michigan University: "Oncologists' decisions about administering late chemotherapy: What makes it so difficult?"
  • 2:30 PM -- Break
  • 2:45 PM -- Danielle Czarnecki, PhD Candidate, UM Department of Sociology: "Moral Women, Immoral Technologies: How Devout Women Negotiate Maternal Desires, Religion, and Assisted Reproductive Technologies"
  • 3:15 PM -- Uchenna Ezeibe, MD, Resident Physician, UMHS Department of Pediatrics & Communicable Diseases: "Pediatric Ethics Consultation Service at a Tertiary Hospital: A Retrospective Review"

Dr. Lewis B. Morgenstern was one of the 21 Med School faculty/staff members who received honors through the Dean's Awards program. He received the Clinical and Health Services Research Award, which recognizes a faculty member or group of faculty members who are identified as having made outstanding contributions to the Medical School in clinical or health services research. You can read the press release here.

Funded by National Institutes of Health.

Funding Years: 2013-2017.

The clinical management of patients with cancer does not entail a "one size fits all" approach. In fact, studies of the genomic landscape of human cancers have demonstrated that cancers can have a multitude of mutations, a subset of which may be "actionable" with current drugs. Thus, the personalization of therapy for cancer will require molecular characterization of unique and shared genetic aberrations. In particular, patients who have advanced / refractory cancer and are candidates for clinical trials could potentially benefit by identifying eligibility for "targeted" drugs based on the "actionable" genesin their specific tumor. Growing technological advances in genomic sequencing has now made it possible to consider the use of sequence data in a clinical setting. Thus, the translation of high throughput sequencing would support a "personalized" strategy for cancer. However, the translation of clinical sequencing bears unique challenges including identifying patients who could benefit, developing informed consent and human subjects protections, outlining measurable outcomes, interpreting what results should be reported and validated, and how results should be reported. This proposal brings together expertise at the University of Michigan including clinical oncology, cancer genetics, genomic science/bioinformatics, clinical pathology, social and behavioral sciences, and bioethics in order to implement this clinical cancer sequencing project. We have focused our clinical sequencing effort on sarcomas and other rare cancers as this is an area of clinical strength at Michigan. Three integrated Projects have the following themes: Project 1) "Clinical Genomic Study" will identify patients with advanced or refractory sarcoma or rare cancers who are eligible for clinical trials, consent them to the study obtain biospecimens (tumor tissue, germline tissue), store clinical data, and assemble a multi-disciplinary Sequencing Tumor Board to deliberate on return of actionable or incidental genomic results; Project 2) "Sequencing & Analysis" will process biospecimens and perform comprehensive sequencing and analysis of tumors to identify point mutations, copy number changes, rearrangements/gene fusions, and aberrant gene expression under CLIA/CAP guidelines; Project 3) "Ethics & Psychosocial Analysis" will evaluate the clinician and patient response to the informed consent process, delivery of genomic sequence results, and use of genomic results.

PI(s): Arul Chinnaiyan (Main Study PI), Scott Roberts (Project 3 PI)

Co-I(s): Ajjai Alva, Rashmi Chugh, Ray De Vries, Jeffrey Innis, Lakshmi Kunju, Rohit Mehra, Nallasivam Palanisamy, Dan Robinson, Moche Talpaz, Scott Schuetze, David Smith, Elena Stoffel, Scott Tomlins, Brian Zikmund-Fisher

Internet Survey Lab

Overview

The Internet Survey Lab at the Center for Bioethics and Social Sciences in Medicine (CBSSM), led by Dr. Brian Zikmund-Fisher, facilitates the programming of complex experimental designs, using the graphical and interactive capabilities of the Internet. CBSSM has extensive experience in developing, programming and conducting survey research using Internet-based methodologies. 

Why We Use the Internet

A key advantage of Internet surveys is that they can shape and direct a user's experience in response to computer generated randomization and/or respondents' own answers to questions earlier in the survey. Additionally, page and answer order can be truly randomized as appropriate to limit cognitive biases. The unique advantage of Internet surveys, however, is that many different types of stimuli can be randomized or varied; static visual images, movies, or sounds can all be used in addition to text. Furthermore, the nature of the browser interface enables user-directed interactivity, such as user-adjustable risk communication graphics, that provide unique opportunities for both knowledge communication and response assessment.

Using the Internet to conduct survey research is also very efficient: we can develop and test surveys in only a few months' time, and once a survey is ready, large scale data collection (e.g., 1500-3000 completed surveys) can be completed in only 2-3 weeks.  Such surveys can also be cost effective, since while significant effort goes into development, creation, and testing of the survey, almost no personnel effort is required for data collection, entering, coding, or cleaning.  In addition, oftentimes several small surveys can be combined into a single instrument, creating further efficiencies.

Sometimes, our studies use large, demographically diverse samples obtained through commercial survey research firms. This methodology allows us to tailor the population being surveyed on multiple demographic variables (e.g., sampling only women age 40-75 for a study about breast cancer treatments) and provides us with ample statistical power to conduct multi-factorial experimental tests. Other times, we use more inexpensive samples from Amazon Mechanical Turk (MTurk) for quick pilot testing or to enable rapid, iterative testing of designs. Regardless, the use of randomized designs ensures high internal validity for the research despite the use of an Internet-only sample.

CBSSM Surveys

CBSSM has had considerable success using this methodology, publishing multiple manuscripts in highly regarded peer-reviewed journals. Studies that have used this methodology have addressed a variety of topics, including:

  • The use of pictographs to display risk (20082008, 2014) including in comparison to other graphical formats (2008, 2010, 2010). 
    Note: to create your own pictographs, see www.iconarray.com.
  • Misprediction of happiness between younger and older adults (2005)
  • Elicitation of utility and willingness to pay (200720072008)
  • Research ethics, e.g., participation of mentally vs. medically ill in research (2005)
  • Risk communications that emphasize incremental risks instead of absolute risks (2008)
  • Simplifying risk communications about adjuvant therapy options (2008).
  • Effect of risk labels on prenatal screening decisions (2007).
  • Time-insensitivity in people's understanding of survival curves (20052007)
  • Self-other discrepancies in medical decisions (20062008)
  • Sequential vs. all at once presentations of risk information (2011)
  • Testing of animated or interactive risk graphics (2011, 2012, 2014)
  • Optimal levels of precision in risk communications (2011, 2012)
  • Framing of health promotion messages (2012)
  • Exploration of role of narratives in decision making (2010)
  • Values Clarification (2015)
  • Intuition and Deliberation in Decision Making (2015)

Contact Us

For questions about our methods or inquiries about potential Internet survey research collaborations, please contact Brian Zikmund-Fisher at bzikmund@umich.edu.

On Thursday, May 19, at 4:30 pm in the Alumni Center, the Inaugural Bishop Lecture in Bioethics was held.  Established by a generous gift from the estate of Ronald C. and Nancy V. Bishop, both graduates of the University of Michigan Medical School (Class of '44), the inaugural address was given by John D. Lantos, MD, in a talk entitled, "The Complex Ethical Mess Surrounding Genetic Testing in Children." 

Dr. Lantos is the Director of the Children's Mercy Bioethics Center in Kansas City and is a leading voice in bioethics.  He has authored or edited five books and numerous publications, including Do We Still Need Doctors?, The Lazarus Case, Neonatal Bioethics, and The Last Physician: Walter Percy and the Moral Life of Medicine.  Lantos has discussed designer babies on Larry King Live, medical errors on Oprah, and ethics consultations on Nightline.  The Center for Bioethics and Social Sciences in Medicine co-sponsored the event.  Over 75 people attended the lecture, which was followed by a reception.

 

John D. Lantos, MD

 

Announcement of Position: Faculty Ethicist

Announcement of Position: Faculty Ethicist


Background
The Clinical Ethics Service within the Center for Bioethics and Social Sciences in Medicine (CBSSM) promotes a culture of patient-centered excellence by performing a comprehensive set of ethics-related activities. The aims of this service are to: liaise with and provide support to the adult and pediatric ethics committees; provide clinical ethics consultation and engage in preventative ethics endeavors; assist with ethics-related policy development on a regular and proactive basis; organize and administer structured educational programs in clinical ethics; and coordinate empiric research with relevance to clinical ethics within CBSSM.

Program Organization
The Clinical Ethics Service is led by Christian J. Vercler, MD MA and Andrew G. Shuman, MD. A dedicated clinical ethicist will manage the program on a daily basis. A cadre of faculty ethicists will rotate on service throughout the year and work closely with the clinical ethicist. Trainees and students will rotate as well. Dedicated administrative support is organized through CBSSM.


Position
The Clinical Ethics Service employs a roster of faculty ethicists who are responsible for staffing ethics consultations arising from any of the clinical venues (inpatient and outpatient; adult and pediatric) within Michigan Medicine during their time on service. They will supervise and participate in the institutional educational endeavors and preventative ethics rounds in a regular and on-going manner. Faculty ethicists will also develop and provide clinical rotations for medical students and house officers on a cohesive ethics service. Each faculty member will be expected to rotate on service for four to six weeks per year, and attend/participate in committee meetings and other events throughout the academic year (this will not necessarily require suspension of other activities when on-service). Depending on the total number appointed, each faculty ethicist will receive $15,000-$20,000 of direct salary support annually, to be distributed and allocated in conjunction with their home department. The initial appointment will last two and a half years and is renewable. Additional appointments will last two years.


Qualifications
Candidates are expected to have faculty appointments at University of Michigan and be in good academic standing; any professional background is acceptable. Candidates are expected to have qualifications that meet the standards outlined by The American Society for Bioethics and Humanities (ASBH) for accreditation for clinical ethics consultants. Direct experience with clinical ethics consultation is required. Familiarity with ethics education and related clinical research would be helpful. Excellent organizational and communication skills across multidisciplinary medical fields are required.


Application Process
Candidates will be vetted and chosen by a selection committee. Candidates are asked to submit:

  • Curriculum vitae or resume
  • One page maximum summary of (1) education/training related to ethics consultation; (2) clinical ethics consultation experience; and (3) motivation/interest in the position
  • Letter of support from Department Chair/Division Head/Center Director or equivalent
  • Submit formal application via email to: lynnam@med.umich.edu


Timeline

  • Application is due September 25, 2017
  • Appointment will take effect January 1, 2018

Contacts

  • Leaders of the Clinical Ethics Service: Christian J. Vercler, MD MA & Andrew G. Shuman, MD
  • Administrative contact: Valerie Kahn – valkahn@med.umich.edu 734 615 5371

James Burke, MD

Faculty

Jim Burke, M.D. is a neurologist who completed residency and a stroke fellowship at the University of Michigan. His undergraduate degree is from the University of Notre Dame and his medical degree from the Loyola University Stritch School of Medicine. He is interested in understanding how physicians use the complex information acquired from modern diagnostic tests and improving decisions to order such tests.

Research Interests: 
Last Name: 
Burke

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