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Fri, May 08, 2015

Their research was featured in PR Newswire and M Health News.

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J. Scott Roberts, PhD


Scott Roberts, PhD, is Associate Professor of Health Behavior & Health Education at the University of Michigan’s School of Public Health (U-M SPH), where he directs the School’s Public Health Genetics program and teaches a course on public health ethics. A clinical psychologist by training, Dr. Roberts conducts research on the psychosocial implications of genetic testing for adult-onset diseases.

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Brian J. Zikmund-Fisher, PhD

Associate Director

Brian J. Zikmund-Fisher is an Associate Professor in the Department of Health Behavior and Health Education, University of Michigan School of Public Health, as well as a Research Associate Professor in the Division of General Internal Medicine, University of Michigan Medical School. He has been part of CBSSM and its precursors at U-M since 2002 and acts as CBSSM Associate Director.

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Policy and Public Outreach

The Bishop Lectureship in Bioethics

Together with the Bishop endowment, CBSSM sponsors the Bishop Lecture in Bioethics.  The Bishop Lecture in Bioethics was made possible by a generous gift from the estate of Ronald and Nancy Bishop, both graduates of the University of Michigan Medical School (Class of ‘44). The Bishop lecture typically serves as the keynote address for the CBSSM Research Colloquium. The Bishop Lecture selection committee is headed by Susan Goold, MD, MHSA, MA. Click here for more details.

CBSSM Research Colloquium

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium features presentations focusing on bioethics and social sciences in medicine across multiple disciplines. Click here for more details.

CBSSM Seminar Series

Building upon the very successful “joint seminars” of past years sponsored by the Bioethics Program and the Center for Behavioral and Decision Sciences in Medicine (CBDSM), CBSSM hosts seminars on a bimonthly basis throughout the academic year, inviting investigators to present both developing and finished research topics. Click here for more details.

Sponsored Events

In addition to the Bishop Lecture in Bioethics, CBSSM has sponsored and co-sponsored a number of other events.

Bioethics Grand Rounds

With support from the UMHS Office of Clinical Affairs and C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital, CBSSM’s Program in Clinical Ethics sponsors the monthly Bioethics Grand Rounds, focusing on ethical issues arising in health care and medicine. This educational session is open to UMHS faculty and staff.

Film Screening & Moderated Discussion

CBSSM also sponsors film screenings and moderated panel discussions. In 2017, CBSSM sponsored a free film screening of "Concussion." The moderated panel included Ellen Arruda, PhD, Mechanical Engineering; Karen Kelly-Blake, PhD, Bioethics, MSU; & Matthew Lorincz, MD, PhD, Neurology. The moderator was Raymond De Vries, PhD.

In 2015, CBSSM co-sponsored a free film screening of "Still Alice." The panel included Nancy Barbas, MD and J. Scott Roberts, PHD and the moderator was Raymond De Vries, PhD. The event was co-sponsored by the Michigan Alzheimer's Disease Center.

Current Event Panels

In 2014, CBSSM co-sponsored the panel "Incidental Findings in Clinical Exome and Genome Sequencing: The Drama and the Data" featuring Robert C. Green, MD, MPH, Associate Professor of Medicine, Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School, as the keynote speaker. The panel included Jeffrey W. Innis, MD, PhD, Morton S. and Henrietta K. Sellner Professor in Human Genetics and Director, Division of Pediatric Genetics, and Wendy R. Uhlmann, MS, CGC, Clinical Associate Professor, Department of Internal Medicine and Department of Human Genetics. The panel was moderated by Sharon L.R. Kardia, PhD, Director, Public Health Genetics Program and the Life Sciences and Society Program, School of Public Health, University of Michigan. This event was also co-sponsored by the Department of Human Genetics, Genetic Counseling Program and Life Sciences and Society, Department of Epidemiology.

In 2013, CBSSM sponsored the panel "What does the Supreme Court ruling on gene patents mean for public health?" The panel featured panelists, Rebecca Eisenberg, JD, Robert and Barbara Luciano Professor of Law; Sofia Merajver, MD, PhD, Professor, Department of Internal Medicine; and Shobita Parthasarathy, PhD, Associate Professor of Public Policy, Gerald R. Ford School of Public Policy. The panel was moderated by Edward Goldman, JD, Associate Professor, UM Department of ObGyn Women's Hospital and Adjunct Assistant Professor, Department of Health Management and Policy.

Decision Consortium

Each year, CBSSM sponsors one Decision Consortium speaker with a focus on health-related decision making. Decision Consortium, hosted by the Department of Psychology, is a University-wide distributed center for scholarship on decision making. Each session involves a vigorous discussion of new ideas and research on problems that have significant decision making elements. CBSSM-sponsored speakers included Kevin Volpp, MD, PhD, UPenn (2015), Karen Sepucha, PhD, Harvard (2013), and Ellen Peters, PhD, OSU (2012). In 2016, CBSSM will sponsor Lisa Schwartz, MD, MS and Steven Woloshin, MD, MS from the Dartmouth Institute.

The Waggoner Lecture

In November of 2010, CBSSM co-sponsored the 15th annual Waggoner Lecture, an annual event in honor of the late Dr. Raymond Waggoner, former chair of the Department of Psychiatry.  The lecture was presented by Bernard Lo, MD,  Director of the Program in Medical Ethics at the University of California-San  Francisco, and was entitled, “Stem cells: Intractable ethical dilemmas or  emerging agreement.”

In November 2011, CBSSM co-sponsored the Waggoner Lecture breakfast.  The lecture was presented by Laura Roberts, MD, chair of the Department of  Psychiatry and Behavioral Sciences at Stanford University School of Medicine, and was entitled, “Becoming a Physician: Stresses and Strengths of Physicians- in-Training.”

Deadly Medicine: Creating the Master Race

In 2012, in conjunction with Taubman Health Sciences Library and the UM Center for the History of Medicine,  CBSSM co-sponsored the  United States Holocaust Memorial Museum’s traveling exhibition, “Deadly Medicine: Creating the Master Race.” The exhibition illustrates how Nazi leadership enlisted people in professions traditionally charged with healing and the public good, to legitimize persecution, murder and, ultimately, genocide.

MICHR Research Education Symposium

In 2013, CBSSM co-sponsored the Michigan Institute for Clinical & Health Research (MICHR) Research Education Symposium, "Life at the Interface of Genomics and Clinical Care." The symposium included a series of talks on topics with implications for translational and clinical research. The keynote speaker was Dr. Ellen Wright Clayton, JD, MD, Rosalind E. Franklin Professor of Genetics and Health Policy; Craig-Weaver Professor of Pediatrics; Professor of Law; and Director, Center for Biomedical Ethics and Society, at Vanderbilt University. Dr. Wright Clayton’s topic was “Addressing Biomedical Ethics.” 


Is your well-being influenced by the guy sitting next to you? (Nov-03)

Rating your satisfaction with your life may not be a completely personal decision. See how your satisfaction rating may be influenced by others.

When answering this question, imagine that there is someone in a wheelchair sitting next to you. They will also be answering this question, but you will not have to share your answers with each other.

How satisfied are you with your life in general?

Extremely satisfied 1       2       3       4       5       6       7       8       9       10 Not at all satisfied

How do you compare to the people surveyed?

You gave your life satisfaction a rating of 1, which means that you are extremely satisfied with your life. In a study done where people with a disabled person sitting next to them wrote down their life satisfaction on a questionnaire, they gave an average life satisfaction rating of 2.4, which means they were very satisfied with their lives.

What if you'd had to report your well-being to another person instead of writing it down?

In the study, half the people had to report their well-being in an interview with a confederate (a member of the research team who was posing as another participant). When the participants had to report in this way, and the confederate was not disabled, the participants rated their well-being as significantly better than those who reported by writing it on the questionnaire in the presence of a non-disabled confederate (2.0 vs. 3.4, lower score means higher well-being). The scores given when reporting to a disabled confederate elicited a well-being score that was no different than that when completing the questionnaire in the presence of a disabled confederate (2.3 vs. 2.4).

Mean life satisfaction ratings, lower score means higher satisfaction
Mode of rating well-being Disabled confederate Non-disabled Confederate
Interview (public) 2.3 2.0
Questionnaire (private) 2.4 3.4
What caused the difference in well-being scores?

When making judgments of well-being, people (at least in this study) tend to compare themselves to those around them. This effect is seen more when well-being was reported in an interview than when the score was privately written down, due to self-presentation concerns. A higher rating was given in public so as to appear to be better off than one may truly feel. Note that the effect was only seen in the case where the confederate was not disabled. While well-being ratings were better overall with a disabled confederate, there was no difference between the private and public ratings. Social comparison led to a better well-being judgment, but it appears that the participants were hesitant to rate themselves too highly in front of the disabled person for fear of making the disabled person feel worse.

Why is this important?

Subjective well-being is a commonly used measure in many areas of research. For example, it is used as one way to look at the effectiveness new surgeries or medications. The above studies show that SWB scores can vary depending on the conditions under which they are given. Someone may give a response of fairly high SWB if they are interviewed before leaving the hospital, surrounded by people more sick than they are. From this, it would appear as though their treatment worked great. But suppose that they are asked to complete a follow-up internet survey a week later. Since they do not have to respond to an actual person face-to-face, and without being surrounded by sick people, they may give a lower rating than previously. Is this because the treatment actually made their SWB worse over the longer term, or simply because a different method was used to get their response? The only way to really know would be to use the same methodology to get all their responses, which might not always be feasible. These are important considerations for researchers to keep in mind when analyzing results of their studies. Are the results they got the true SWB of their participants, or is it an artifact of how the study was done? And is there a way to know which measure is right, or are they both right which would lead to the conclusion that SWB is purely a momentary judgment based on a social context?

For more information see:

Strack F, Schwarz N, Chassein B, Kern D, Wagner D. Salience of comparison standards and the activation of social norms: Consequences for judgements of happiness and their communication. British Journal of Social Psychology. 29:303-314, 1990.

What is the price of life? (Aug-03)

Do you think that your life is worth more than the amount that the government usually uses as the maximum to spend to provide one year of life?

Imagine that you are a member of a government panel that is trying to decide how cost-effective a medical treatment must be in order for the government to cover the costs of the treatment. Suppose that a certain treatment could provide one additional year of life to an otherwise healthy person. What is the highest amount the government should be willing to pay per person for this treatment?

How do your answers compare?

For the past twenty years, the figure most often used as the maximum amount to spend to provide one year of life has been $50,000. This figure was originally proposed since it was the cost of a year of kidney dialysis, a lifesaving treatment that the U.S. government funds in Medicare.

Should the number be higher or lower than the current standard?

Conventional wisdom would suggest that the number be higher to take into account the inflation that has occurred in the years since the standard was developed. Current practices such as annual Pap smear screening for women with low risk for cervical cancer, which has a cost of $700,000 per year of life gained, also suggest that society is willing to pay more than the current standard for a year of life. The authors of the cited article recommend, based on current treatment practices and surveys of the general public, that the cost-effectiveness threshold should be revised to be around $200,000.

Should the number increase, decrease, or stay the same over time?

Again, it seems that the threshold amount should increase over time due to inflation. However, other factors come in to play that affect the value.

Since new technologies are emerging all the time, some of which will be deemed cost-effective, there will be more and more treatments to be offered in the future. Also, the rate of use of treatments is an important consideration, because even if a new treatment is more cost-effective than an old one, if it is used more often it will end up costing more to society overall. With more treatments becoming available and more people being given treatments, the threshold cost will probably have to decrease so that insurance companies and the government can keep up with the increasing availability and demand.

Why is this important?

Insurance companies and government health care entities face a continuing struggle when trying to determine which medical treatments to cover. Health care costs are increasing rapidly, so these groups will be facing even tougher decisions in the future. Establishing cost-effectiveness guidelines would be extremely helpful as an aid to making the decisions about treatment coverage. Evidence shows that the current threshold is probably not an accurate reflection of the desires of society or actual prescribing practices. It needs to be adjusted to become useful once again, and must be reevaluated periodically to make sure the value keeps up with trends in the health care market, rather than being left alone without question for two decades as is the current situation.

For more information see:

Ubel PA, Hirth RA, Chernew ME, Fendrick AM. What is the price of life and why doesn't it increase at the rate of inflation? Archives of Internal Medicine. 163:1637-1641, 2003.

Supporting information for: 2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)

"Setting priorities for Medicaid: The views of minority and underserved communities"
Presenter: Susan Goold, MD, MHSA, MA

Co-authors: Lisa Szymecko, JD, PhD; H. Myra Kim, ScD; Cengiz Salman, MA; A. Mark Fendrick, MD; Edith Kieffer, MPH, PhD; Marion Danis, MD, Zachary Rowe, BBA

Setting priorities for state Medicaid programs challenges policy makers. Engaging beneficiaries affected by tradeoffs could make allocations more just and more sensitive to their needs. 

Academic-community partnerships adapted the simulation exercise CHAT (CHoosing All Together) to engage community members in deliberations about Medicaid spending priorities.  After an informational video about Medicaid, individuals and deliberating groups choose from a menu of spending options constrained by limited resources. We randomly assigned participants from low-income communities throughout Michigan to participate in CHAT with (n=209) or without group deliberations (n=181) in English, Spanish or Arabic. Data collection included pre- and post-CHAT individual priorities and group priorities.

Low-income participants ranged from 18 to 81 years old (Mean 48.3); 61.6% were women. Over half (56.7%) self-identified as white, 30.8% African-American, 17.3% Hispanic, 9.2% Native American, and 12.1% Arab, Arab-American or Chaldean. Most (65.9%) had a chronic condition and 30.3% reported poor or fair health.

Before CHAT, most participants prioritized eligibility consistent with Medicaid expansion. They also prioritized coverage for a broad range of services. Most accepted daily copays for elective hospitalization (71.6% deliberators, 67.9% controls) and restricted access to specialists (60.2% deliberators, 57.4% controls). Deliberators were more likely than controls to increase, after deliberations, what they allocated to mental health care (between arm difference in allocation=0.22, p=.03) and eligibility (between arm difference in allocation=0.18, p=.04). Deliberating groups also prioritized eligibility; only 3 of 22 chose pre-expansion eligibility criteria, and 9 of 22 chose to expand eligibility further.

Members of underserved communities in Michigan put a high priority on Medicaid expansion and broad coverage. When given the opportunity to deliberate about priorities,  participants increased the priority given to expanded eligibility and coverage for mental health services.

"How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke"
Presenter: Kunal Bailoor, MD Candidate

Co-authors: Chithra Perumalswami, MD, MSc; Andrew Shuman, MD; Raymond De Vries, PhD; Darin Zahuranec, MD, MS

Complex medical scenarios may benefit from a more paternalistic model of decision making. Yet, clinicians are taught to value patient autonomy, especially at the end-of-life. Little empirical data exist exploring opinions on paternalism.

Methods: A vignette-based survey exploring surrogate decision making after hemorrhagic stroke was administered to clinicians (faculty, residents, and nurses) at an academic health center, and non-clinicians recruited through a university research volunteer website. The cases involved an urgent decision about brain surgery, and a non-urgent decision about continuation of life support one week after stroke. Respondents rated the acceptability of paternalistic decision making, including clinicians not offering or making an explicit recommendation against the treatment, on a 4 point Likert scale.

Results: Of 924 eligible individuals, 818 (649 non-clinicians, 169 clinicians) completed the survey (completion rate 89%).  A minority of respondents (15.3%) found it acceptable not to offer surgery. Most believed it was acceptable to make an explicit recommendation that would likely result in death (73% for avoiding surgery, 69% for stopping the ventilator). Clinicians were more likely than non-clinicians to consider not offering surgery acceptable (30% vs 11%, p<0.0001). Clinicians were more likely to consider recommendations against surgery acceptable (82% vs 71%, p=0.003) and to consider recommendations to discontinue the ventilator acceptable (77% vs 67%, p=0.02). There were no differences between the nurse and physician acceptability ratings (p=0.92).

Conclusions: Clinicians and the lay public differ on the acceptability of paternalistic decision making. Understanding these differences are vital to improving communication between clinicians, patients, and families.

"Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis"
Presenter: Stephanie Kukora, MD

Co-authors: Janice Firn, PhD, MSW; Patricia Keefer, MD; Naomi Laventhal, MD, MA

Background: Care providers of critically ill patients encounter ethically complex and morally distressing situations in practice. Though ethics committees guide ethical decision-making when conflicts arise in challenging cases, they rarely address routine needs of individual providers. Without ethics education, providers may lack skills necessary to resolve these conflicts or insight to recognize these dilemmas.

Objective: We sought to identify whether providers remark on ethical dilemmas/moral distress without being specifically prompted, when asked to comment on a recent in-hospital pediatric death. We also sought to characterize the nature of dilemmas or distress if found.

Methods: Providers involved in a deceased child’s care in the 24 hours prior to death were electronically surveyed. Questions included demographic information and free-text response. Free-text responses were thematically analyzed in Dedoose.

Results: There were 307 (35%) free-text responses in 879 completed surveys (33% total response rate), regarding the deaths of 138 patients (81% of in-hospital pediatric deaths) from November 2014 to May 2016. Multidisciplinary care team members from diverse hospital units were represented. 52 respondents described ethical challenges and/or moral distress. Disagreement/regret was a major theme, with subthemes of futility, suffering, and “wrong” medical choice made. Failure of shared decision-making was also a major theme, with subthemes of autonomy and best interest, false hope, denial, and misunderstanding/disagreement between the family and medical team. Some providers revealed personal ethical struggles pertaining to their role, including medication provision for pain at the end of life, struggling to be “truthful” while not divulging information inappropriate for their role, and determining when providing comfort care is ethically permissible.

Discussion/Conclusion: Providers experience ethical conflicts with pediatric end-of-life care but may be unwilling or unable to share them candidly. Education assisting staff in identifying and resolving these dilemmas may be helpful. Further support for providers to debrief safely, without criticism or repercussions, may be warranted.

"Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients"
Presenters: Jason Adam Wasserman, PhD; Mark Navin, PhD

Clinical bioethics traditionally recognizes a hierarchy of procedural standards for determining a patient’s best plan of care. In broad terms, priority is given first to autonomous patients themselves and then to surrogates who utilize substituted judgments to choose as they believe the patient would have chosen. In the absence of good information about what the patient would have wanted, clinical ethicists typically retreat to the “best interest” standard, which represents a relatively objective assessment designed to maximize benefits and/or minimize harms.  In this paper, we argue that “capacity for preferences” is a conceptually distinct and morally salient procedural standard for determining a patient’s best plan of care.  We build our argument on the grounds that 1) that many patients who lack decisional capacity can nevertheless reliably express preferences (an empirical claim); 2) these preferences are distinct from best interest and not reducible to best interest considerations; 3) that capacity for preferences, at a minimum, has moral valence for situations in which best interest is undetermined (and we argue this happens more frequently than commonly recognized); and, finally, 4) that capacity for preferences in incapacitated patients lacking reliable or valid surrogates might even subvert a best interest course of action in some cases.  Some precedent for our analysis can be found in the concept of pediatric assent. However, the idea that patient preferences matter morally has broad application for adult patients, including for those with advanced dementia and other mental illnesses that preclude capacity for decision-making.

Is Bill Gates' time worth more than yours? (Jul-03)

Informal caregiving for relatives (parents, grandparents, spouses) can be time consuming. Can we attach dollar value to that time? Is everyone's time worth the same amount?

Imagine that your mother is suffering from moderate dementia and needs assistance with daily activities such as bathing and dressing. You are the only person available to care for her, as you are an only child and your father has passed away. On average, your mother will need about 2 to 3 hours of help per day, or 17 hours per week total.

Assuming that you provide 17 hours of care per week, that means you will provide about 900 hours of care each year. How much money would you say the time you devote to caregiving is worth each year?
Now imagine that Bill Gates, the world's richest person, is in the same situation as you. He has to provide 17 hours of care per week to his mother. How do you think the value of the time he spends giving care compares to the value of the time you spend giving care?
  • His is worth more
  • His is worth the same amount
  • His is worth less

How do your answers compare?

According to a study done to determine the costs of informal caregiving, the average value of the time spent giving care to someone with moderate dementia was about $7400. This was calculated using an average time of about 900 hours per year, at the mean wage for a home health aide in 1998 of $8.20 per hour.

What if the person you're caring for has less or more severe dementia?

As you might imagine, the cost of informal care differs depending on the severity of dementia. People with mild dementia don't need as much care (8.5 hours per week), and those with severe dementia need much more (41.5 hours per week). The amount of care needed directly impacts the estimated cost of care:

Dementia severity Hours of care per week Estimated cost of informal care
Mild 8.5 $3630
Moderate 17.4 $7420
Severe 41.5 $17,700
Why is this important?

As the Baby Boomer generation ages, the number of people needing informal care is going to increase dramatically. In order to make informed policy decisions regarding care for older people, the government will need an estimate of the value of informal care. A major obstacle to this is that there is no set way for making the estimates.

Earlier, you said that Bill Gate's caregiving time would be worth the same amount as yours. That implies that basing national estimates of caregiving costs on average wages would be the proper way to go about the calculations, since it means everyone's time is equally valuable.

However, some people think that not everyone's time is of equal value. In that case, using average wages to estimate the total cost of caregiving may not lead to an accurate representation. If one group of people is more likely to provide care than another group, then the average value of all caregivers' time may not be the same as the average of all peoples' time. This would possibly lead to an over- or underestimation of caregiving costs, depending on the value of the time of common groups of caregivers. Even without an agreed-upon estimation method, some valuable data can be generated.

The estimation method used in this study likely led to conservative figures, so the true costs of informal caregiving are probably higher than reported here. Even using this conservative method, the costs to society are staggering. The researchers estimated that the cost of informal caregiving for dementia alone in 1998 was $18.6 billion, which is almost two-thirds as much money as that actually spent on paid home care services for all conditions, not just dementia! That figure will grow considerably in the not-so-distant future when the Baby Boomers begin to need caregiving, whether formal or informal, and will likely have a large impact not just on health care systems, but on society as a whole as more and more people are called on to provide informal care.

For more information see:

Langa KM, et al. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine. 16:770-778, 2001.

Joel Howell, MD, PhD


Joel D. Howell is a Professor at the University of Michigan in the departments of Internal Medicine (Medical School), Health Management and Policy (School of Public Health), and History (College of Literature, Science, and the Arts), as well as the Victor C. Vaughan Professor of the History of Medicine. He received his M.D. at the University of Chicago, and stayed at that institution for his internship and residency in internal medicine. At the University of Pennsylvania, he was a Robert Wood Johnson Clinical Scholar, and received his Ph.D. in the History and Sociology of Science.

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Angela Fagerlin, PhD


Dr. Fagerlin served as Co-Director of CBSSM from 2010-2015. She is currently Chair of the Department of Population Health Sciences at University of Utah School of Medicine and Research Scientist, Salt Lake City VA Center for Informatics Decision Enhancement and Surveillance (IDEAS)

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