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Supporting information for: 2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)
Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: “Language and Communication as Professionalization Projects in Clinical Ethics Consultation”
Although sociologists have examined the field of bioethics broadly, less empiric research has explored the process of clinical ethics consultation (CEC) in practice. This paper seeks to describe how UMHS’ CEC service focuses on communication, language, and terminology in professionalizing their membership and broadening the scope of their services. The CEC service established a specific communication standard for its written recommendations that emphasizes specificity and clarity for patients and their families, other providers, and members of the ethics committee. By identifying and reinforcing the importance of language and word choice in their own recommendations, newer members of the CEC are “trained” in how to craft recommendations, develop a specific jargon, and establish communication standards that differ from those used in other aspects of medical practice and documentation. The CEC service is often involved in addressing a variety of communication issues that arise in patient care, and these problems are thusly considered within the professional scope of the CEC service. By establishing the CEC service as an appropriate resource for dealing with communication issues between patients and their care team, the CEC service expands the professional boundaries of their work beyond strictly ethical expertise. The implications of these processes for professionalization and communication may be applicable to CEC services more broadly.
Devan Stahl, PhD, Assistant Professor of Clinical Ethics, Center for Ethics and Humanities in the Life Sciences, MSU: "Is there a right not to know?"
There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.
The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.
Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"
Context: The decision to forego curative treatments (which includes the Medicare Skilled Nursing Facility Medicare benefit) is not financially neutral for terminally ill patients who do not have concurrent insurance (Medicaid or private insurance) in that they are subsequently asked to pay for room and board of the nursing home if they choose the Medicare hospice benefit. The association between insurance status and location of death is currently unknown.
Purpose: To determine whether the concurrent insurance status with Medicare (Medicaid vs. private insurance) of decedents is associated with location of death in a nationally representative survey of elderly Americans.
Methods: Longitudinal analysis of 7,979 decedents aged 50 years or older in the Health and Retirement Study from 2000-2010 (6 biennial waves). We examined associations between insurance status and location of death (home, hospital, nursing home, hospice) using multinomial logistic regression models and adjusting for demographic, socioeconomic, and clinical variables.
Results: Decedents with dual eligible insurance before or at the time of death were significantly more likely to die in a nursing home than to die in a hospital (relative risk ratio (RRR) 2.6; 95% CI, 1.9-3.6, p<0.001).
Those dying in a nursing home tended to be unpartnered (widowed, separated or divorced, never married), cognitively impaired or with dementia. Elderly Americans less likely to die in a nursing home were blacks and Hispanics, individuals with cancer, and those with the highest wealth.
Conclusions: Dual eligible patients are substantially more likely to die in a nursing home than a hospital, and therefore may miss out on valuable services at the end of life, including hospice care. This study may have several implications for current proposed Medicare policy changes to allow patients access to both curative care and hospice care at the same time.
Lauren B. Smith, MD, Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient: Is it ethical? Is it dangerous?"
The care of VIP patients is often prioritized at medical centers and this prioritization may lead to disparate access to care and patient safety issues. VIP patients may be donors, celebrities, or other physicians. Allowing VIP patients access to earlier care or “special treatment” not only raises social justice issues, but also has been shown to lead to medical error and suboptimal treatment. Ethical considerations will be discussed and recommendations will be presented.
Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"
Female physicians must often reconcile the seemingly contradictory goals of valuing the health and well-being of their patients above all else, and actively mothering young children. One of the fundamental ethical precepts in medicine is for the physician to put the best interests of her patient ahead of her own. For example the Fellowship Pledge of the American College of Surgeons states, “I pledge . . . to place the welfare and the rights of my patient above all else.” The challenge of weighing the needs of one’s own children against those of a patient is painfully acute for the breastfeeding physician. Is it ethically permissible to leave a busy clinic - or a patient in the under anesthesia in the operating room - in order to express breastmilk? Pragmatic strategies, such as mandates for appropriate space and time to pump, offer modest gains. However, we will suggest the need to re-envision the concept of “patient-first”, which is a vestige of the patriarchal hegemony that gave rise to our modern medical ethos, whereby nursing mothers are highly disadvantaged and virtually unable to reach the highest moral ideals of the profession. Is the “right” to breastfeed absolute, or if should it be superseded by the needs of the patient? We will explore whether this issue is deeply personal, to be reconciled by affected individuals, or warrants an “outside-in” approach in which physicians and bioethicists collectively and more philosophically consider whether and how to support women who choose to work and breastfeed.
Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"
Background: The expanded use of Whole Genome Sequencing (WGS) has generated excitement due its potential to tailor medical treatment. However, clinical use of WGS poses challenges for informed consent and disclosure of results. Few empirical studies have examined patients’ understanding of and satisfaction with the clinical communication of WGS results.
Methods: The MedSeq Project is a randomized clinical trial examining the impacts of WGS in primary care and cardiology. We analyzed survey data from patients’ initial enrollment and at multiple time points following physician disclosure of results. Domains of interest included understanding of informed consent, subjective understanding, satisfaction with communication of results, and decisional regret.
Results: Survey responses were provided by 202 participants (mean age = 55 years; 51% male; 80% college graduates). At enrollment, participants understood the majority of key facts about the study (mean = 19.6 / 22 items answered correctly), although some incorrectly answered items addressing results to be returned (e.g., 18% believed they would receive their entire DNA sequence. Higher informed consent knowledge scores were associated with female gender and higher genomic knowledge, subjective numeracy, and education levels (all p < .05). After results disclosure, participants had low scores of decisional regret regarding study participation; they also reported high levels of satisfaction with their physicians’ disclosure of results (mean = 5.9 on a 6-point scale), although ~20% of participants reported receiving “too much” information. Satisfaction with communication did not vary by participants’ demographics or other characteristics (e.g. genomic knowledge).
Conclusions: This study suggests that the intervention was well understood by patients, with low levels of decisional regret and high satisfaction with communication. Future research will need to examine these issues in more diverse samples, where misconceptions about the clinical WGS and concerns about information overload may be magnified.
Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"
23andMe is back on the market as the first direct‐to‐consumer genetic testing company that “includes reports that meet Food and Drug Administration standards for being clinically and scientifically valid.” Its current product includes 36 health‐related carrier‐status reports and consumers’ raw genetic data. But while its front‐end product is selling individual genetic tests online, its back‐end business model is amassing one of the largest privately owned genetic databases in the world.
This article argues that as the Department of Health and Human Services revises its regulation of research with human subjects as well as its proposal to exempt autosomal recessive carrier screens from premarket authorization it should contemplate the intersection of these areas of rulemaking—and consider how enhancing the security of federally funded research but loosening private access to biospecimens will drive more research into the private sector and result in less, not more, protection for human subjects.
Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues): "Community engagement in setting research priorities: Representation, Participation and Evaluation"
We describe a 5-year project that engaged minority and underserved communities throughout the state of Michigan in deliberations about health research priorities to increase community voice in how limited health research resources are allocated. DECIDERS (Deliberative Engagement of Communities in DEcisions about Research Spending) formed a state-wide Steering Committee (SC) to develop a version of the deliberative exercise CHAT for health research priorities, then convened 47 groups to evaluate the tool and describe community research priorities.
Facilitators: Susan Goold and Zachary Rowe, Co-Directors
Panelists: Karen Calhoun, Charo Ledon, Esther Onaga, Lisa Szymecko
Supporting information for: 2012 CBSSM Research Colloquium
Making a baby in the 21st century: An updated user manual
Presenting author: Melissa Constantine, PhD, Postdoctoral Research Fellow, CBSSM
Genetic testing has had a major role in prenatal care for decades. Aneuploidy screening tests use non-invasive measurements of maternal serum markers to indicate whether a fetus is at increased risk for Down syndrome (trisomy 21) and Edward syndrome (trisomy 18), chromosomal abnormalities for which there are no curative or interventional treatments. Prenatal screening is often a starting point on a pathway of decision making regarding invasive testing – with associated non-negligible miscarriage risks – and the termination of pregnancy. As such, decisions to accept or refuse prenatal screening are preference sensitive and patient informed consent or informed refusal is warranted.
In the last year, new methods of genetic analysis for fetal diagnosis for multiple conditions have been introduced for clinical use, and the array of detectable fetal conditions is expanding. Clinically, the new methods substantially improve on current diagnostic protocols; they are non-invasive, safe, easy to use, have sensitivity and specificity approaching 100% and can be administered as early as 7-10 weeks gestation. Yet the uptake of a prenatal diagnostic testing for genetic conditions will continue to be a value-laden, preference sensitive choice and the need for informed consent will remain.
Ostensibly, the purpose of offering testing and the subsequent decision is to increase a woman’s control in her reproductive choices. Some characteristics of the new testing technologies, such as earlier, confirmatory diagnosis, may enhance this control, although research on the process and experience of decision making for prenatal testing has consistently identified several aspects of current testing protocols that actually diminish control and obfuscate the perception of choice. This presentation will explore how the clinical integration of the new genetic tests may mitigate, or exacerbate, women’s control in decision making and choice for prenatal diagnosis.
Dr. Melissa Constantine earned her Ph.D. in Health Service Research from the University of Minnesota and is currently a Postdoctoral Research Fellow at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. Dr. Constantine’s work in measurement and psychometrics includes development and validation of health-related scales such as the Pelvic Organ Prolapse and Incontinence Sexual Questionnaire (PISQ-IR). Her research interests focus on the ethical and social implications of the clinical integration of prenatal genetic tests.
Using community-based participatory research and user-centered design approaches in developing an interactive diabetes decision aid
Presenting authors: Vida A. Henderson, PharmD, MPH, MFA, Center for Health Communications Research; and Deliana Ilarraza
Co-authors: Kathryn LC Barr, MPH; Lawrence An, MD; William Newhouse; Michele Heisler, MD, MPH
Background: Together, community-based participatory research (CBPR), user-centered design (UCD) and health information technology (HIT) offer promising approaches to improve health disparities.
Objectives: This presentation will describe the application of CBPR and UCD principles to the development of iDecide/Decido, an interactive, tailored, web-based decision aid delivered by community health workers (CHWs) to African-American and Latino participants with diabetes in Southwest and Eastside Detroit. The decision aid is offered in English or Spanish and is delivered on an iPad in participants’ homes.
Methods: The overlapping principles of CBPR and UCD used to develop iDecide/Decido include: a community or user-focused approach; equitable academic and community partnership in all study phases; an iterative development process that relies on input from all stakeholders; and a program experience that is specified, adapted, and implemented with the target community.
Results: Collaboration between community members, researchers, and developers are especially evident in the program’s: design concept, animations, pictographs, issue cards, goal setting, tailoring, and additional CHW tools.
Conclusions: Applying the principles of CBPR and UCD can be successfully employed in developing health information tools that are easy to use and understand, interactive, and target health disparities.
Vida Henderson, PharmD, MPH, MFA, currently works with the behavioral science team at the Center for Health Communications Research where she writes and tests tailored content for multi-media health behavior interventions. She has worked as a clinical pharmacist providing health education and medication counseling to low-income communities; and she has served as a faculty member at Xavier University of Louisiana College of Pharmacy in New Orleans. Vida has recently received a Master of Public Health degree in Health Behavior and Health Education from the University of Michigan. Her research interests include health communications, spirituality and health, and health disparities.
Deliana Ilarraza is a Community Health Worker for the Community Health and Social Services Center (CHASS)/REACH Detroit Partnership. Deliana works with community organizations, schools and churches, establishing sites for physical activity classes and conducting diabetes awareness and prevention programs and studies. She has worked with the National Kidney Foundation of Michigan, the Adolescent Diabetes Health Literacy Study, and the Journey to Health diabetes management and empowerment program, facilitating workshops, teaching curricula, and evaluation.
Resident attitudes toward ethical and medical decision-making for neonates born at the limit of viability
Presenting author: Naomi Laventhal, MD, MA, Clinical Lecturer, Department of Pediatrics and Communicable Diseases, CBSSM faculty
Co-author: Stephanie Kukora, MD
Background: Existing guidelines call for consistent resuscitation practices for extremely preterm infants based on epidemiologic data, but appropriate frameworks for value-driven decision-making in this context are still debated. Neonatologists’ attitudes are well-studied, but those of resident physicians are poorly understood.
Objectives: To describe residents’ knowledge of our practices, attitudes toward gestational age (GA) based resuscitation thresholds, and ethically relevant considerations for decision-making at the margin of gestational viability.
Methods: We surveyed our pediatric residents anonymously, asking them to identify current practices and ideal GA thresholds for offering and insisting on resuscitation, and the importance of contributing factors in decision-making for extremely preterm infants. Results: Response rate 61% (n =36). Many (62%) residents correctly identified 23 weeks as the lower threshold for resuscitation in our NICU (range 21 - 24), despite finding our practices inconsistent (84%) and unclear (89%). Fewer (21%) correctly identified 24 weeks as the latest GA that parents may refuse resuscitation (range 23 - 42, 32% 25 weeks, 21% 26 weeks, 16% >26 weeks). Most disagreed with our current practices, identifying a preferred older GA for the lower threshold: 48% at 24 weeks, and 18% at 25 weeks (range 23-27). Most thought the upper threshold for elective resuscitation was too low, with 24% and 28% indicating 25 and 26 weeks, respectively, and 33% ≥28 weeks (range 24-40). Compared to current considerations, they reported scientific evidence to be undervalued (p<.0001), and attendings’ personal beliefs to be overvalued (p<.0001). Responses trended toward family social and financial situations being undervalued.
Conclusions: Our residents recognize decision-making for extremely preterm infants that is supported by known epidemiology, but attribute it to physicians’ personal beliefs, rather than scientific evidence. This suggests educational deficits, and a need for further study in a larger sample. Preferences for a higher GA threshold for initiating resuscitation and a wider GA range in which parents may refuse it may reflect disproportionate pessimism about preterm infants.
Dr. Naomi Laventhal joined U-M in 2009, after completing her residency in pediatrics, fellowships in neonatology and clinical medical ethics, and a master’s degree in public policy at the University of Chicago. In the Brandon Neonatal Intensive Care Unit at C.S. Mott Children’s Hospital she cares for critically ill newborns, provides prenatal consultation for parents expecting to deliver premature infants, and teaches neonatal-perinatal medicine and bioethics to residents and medical students. Her research is in neonatal clinical ethics, and is currently focused on decision making for infants born at the margin of gestational viability. Dr. Kukora is a resident in Pediatrics, having completed her MD at the University of Texas Southwestern Medical School.
Distrust of pediatricians’ sleep advice: Focus group results from the Project for African American Infant Safety
Presenting author: Kathryn L. Moseley, MD, MPH, Assistant Professor, Department of Pediatrics and Communicable Diseases, CBSSM faculty
Co-author: Jennifer C. Sanchez, MPH
Background: Sudden Infant Death Syndrome (SIDS) is the number one cause of death for infants from birth to one year of age and can be reduced by placing the infant in the supine sleeping position. Although the number of SIDS-related deaths is decreasing, it still remains a significant issue, especially in the African American population where the supine sleep position is used less. PrAAIS (Project for African American Infant Safety) is a randomized controlled trial promoting infant supine sleep among African American parents of newborns in Detroit, Michigan through the creation and distribution of tailored health educational materials.
Methods: We conducted six exploratory focus groups with a total of 29 African American parents of young infants to identify barriers and facilitators to infant supine sleep.
Results: A prominent barrier that emerged during data analysis was distrust of physicians’ advice about supine sleep. This distrust stemmed from: a) skepticism of the validity of information provided by childless pediatricians, b) the paternalistic instructional style of pediatricians’ sleep advice (“you must do this”), and c), the frequent changes in sleep position recommendations that are not consistent with mothers’ lived experience, where the only rationale provided is that “studies show…”
Discussion: Parental distrust is not surprising, given these assessments. Our results suggest that physicians may become more trustworthy sources of information about supine sleep if they: a) openly acknowledge parental confusion about the guidelines, b) provide concrete advice on methods to successfully achieve infant supine sleep in a more participatory manner, and c) place the danger of ignoring the guidelines in context through a discussion of both the relative and absolute risk to their infant of dying from SIDS or suffocation.
Dr. Kathryn Moseley is a clinical bioethicist as well as board-certified pediatrician and neonatologist. For eleven years, Dr. Moseley was the Director of Bioethics for the Henry Ford Health System in Detroit, Michigan, overseeing a busy ethics consultation service. She joined U-M in 2002 with a joint appointment in the Program in Bioethics and the Child Health Evaluation and Research Unit to conduct research on the racial differences in health care decision-making she discovered doing clinical ethics consultations and how those decisions are affected by culture and trust. She recently received a grant from the NIH to conduct a 5-year trial of a culturally-tailored intervention to decrease the incidence of Sudden Infant Death Syndrome in the African American community. She co-chairs the Pediatric Ethics Committee and directs the ethics consultation service at C.S. Mott Children’s Hospital.
What’s in a name? The effect of a disease label on parents’ decision to medicate a colicky infant
Presenting author: Laura D. Scherer, PhD, Postdoctoral Research Fellow, CBSSM and VA
Co-authors: Brian K. Zikmund-Fisher, PhD; Angela Fagerlin, PhD; Beth A. Tarini, MD
It is common for physicians to diagnose infants who have excessive regurgitation and associated crying with Gastroesophageal Reflux Disease (GERD). From 1999-2004 there was a 7-fold increase in the use of prescription medications to treat GERD in infants <1 year old (Hassal, 2012). However, clinical trials have shown that existing medications are no better than placebo in treating these symptoms (Orenstein et al., 2009) and the majority of infants grow out of this behavior without medical intervention. Given this, it is unclear why medical treatment of GERD persists. One possibility is that the way that physicians frame their assessment of the symptoms influences parents’ perceived need to medicate their child. In the present study, we examined how a doctor’s explanation—in particular, the doctor’s use of the diagnostic label “GERD”—influences parents’ desire for medical interventions. To explore this question, we asked parents in the waiting room of a general pediatrics clinic to read a scenario (2x2 randomized design) in which they were asked to imagine they had an infant who cried and spit up excessively. The scenario then described a pediatric appointment in which the infant either received a formal diagnosis of GERD, or not. In addition, half of parents were explicitly told that existing medications are ineffective at treating the symptoms, or not. Results showed that the presence of a GERD diagnosis made parents more interested in medicating their infant, even when they were explicitly told that the medications do not work. Moreover, the GERD diagnosis made parents less likely to think that their infant would get better without medication, relative to parents who received no diagnosis. In conclusion, physician labeling of normal infants as “diseased” may increase parents’ willingness to medicate their child.
Dr. Laura Scherer is a Postdoctoral Research Fellow at the VA Center for Clinical Management Research and the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. She received her PhD in Social Psychology from Washington University in St. Louis, and will soon be an Assistant Professor of Psychology and Health Sciences at the University of Missouri in Columbia. Her interests include the impact of emotions and intuition on medical decision making, and the psychological phenomena that lead to medicalization and overtreatment.
Cracking the code: Ethical issues involved in the decision to undergo genetic testing
Presenting author: Lauren B. Smith, MD, Assistant Professor, Department of Pathology, CBSSM faculty
Advances in molecular diagnostics have led to the capability of sequencing an individual’s germline DNA or exome for as little as $1000. An ethical analysis and discussion of genetic testing, both historically and as it relates to this new technology, will be presented. The discussion will include factors related to the decision to undergo testing, possible benefits and harms, and issues surrounding research protocols and commercial testing services. The discussion will include an overview of testing for Huntington disease, breast-ovarian cancer syndromes, and Alzheimer’s disease as illustrative examples.
Dr. Lauren Smith is an Assistant Professor in the Department of Pathology at the University of Michigan, specializing in hematopathology. She has been a member of the University of Michigan Adult Ethics Committee since 2005 and also serves as a member of the Michigan State Medical Society Ethics Committee. Her research interests include ethical issues in clinical medicine and pathology.
The myth of individual risk
Presenting author: Ralph Stern, MD, PhD, Clinical Assistant Professor, Department of Internal Medicine
Co-author: Zachary Goldberger, MD
Medical decision-making often relies upon clinical prediction models to estimate individual risk. Morbidity and mortality predictions (e.g. Framingham for ischemic heart disease in healthy patients or APACHE for mortality in critically ill patients) are often used for treatment decisions (e.g. statins, aspirin, hypoglycemic therapy). As such, their prognostic value carries particular importance for shared decision-making with patients and their families. However, it remains underappreciated that clinical prediction methods were developed to analyze disease in populations, not individuals. The notion that such models can give individual patients a unique probability of a health outcome is highly debatable. When the goal is allocating treatments to high risk subgroups to reduce costs, these models may be useful. But when the goal is allocating treatments to high risk individuals, none of the models should be the sole basis for clinical decisions.
Because risk cannot be measured in an individual, there is no way to experimentally verify any of the individual predictions provided by a model. This can only be achieved by assembling a group of patients similar to the individual in question. That each of these groups may have a different risk means there is no such thing as individual risk, an issue identified by John Venn in 1866 and known as the reference class problem. Different models may yield substantially different individual risk estimates. This is an inherent limitation, which is not eliminated by inclusion of more risk factors in the model or other proposed solutions.
While these models are widely used, it remains unclear how best to apply them. Clinicians who use these models to make patient care decisions need to be aware of their limitations.
Dr. Ralph Stern is an Assistant Professor of Medicine in the divisions of Cardiovascular Medicine and Molecular Medicine and Genetics. His clinical interests are hypertension and medical and cancer genetics. His research interests include risk stratification and the clinical utility of new risk factors.
Dr. Zachary Goldberger is a 4th year cardiology fellow and Robert Wood Johnson Clinical Scholar. His research interests center on antiarrhythmic therapy. Specifically, he is interested in understanding the attitudes and experiences of patients receiving implantable cardioverter-defibrilators (ICDs), and creating a decision aid to enhance shared decision-making for patients receiving ICDs for primary prevention of sudden cardiac death. He is also studying utilization of antiarrhythmic therapy and drug toxicity, as well as patterns of care in resuscitation during in-hospital cardiac arrest. His teaching interests center on improving ECG literacy and cardiac physical examination skills in trainees.
The swinging gate: Genetic testing and ethical issues
Presenting author: Wendy R. Uhlmann, MS, CGC, Clinical Assistant Professor, Departments of Internal Medicine and Human Genetics
Advances in genetic testing have resulted in an exponential increase in the number of genetic tests that are available. Given the rapid pace of genetic test introduction, few tests have practice guidelines. As a result, healthcare professionals who order these tests and the genetic testing laboratories have gate-keeper roles with genetic testing. Genetic tests, unlike most medical tests, present some unique considerations given the potential familial implications in addition to the fact that genetic testing is a moving target. Communication of genetic information and genetic test results along with medical record documentation of this information raises several ethical and policy issues, including: Who needs to know? What information should be communicated? Who is obligated to inform whom? What factors need to be considered in the communication of genetic information? Cases from the University of Michigan Medical Genetics Clinic will be used to illustrate ethical issues that clinicians encounter with patients pre-testing and post-testing, including: competing obligations, testing children, carrier testing for rare autosomal recessive genetic conditions, predictive genetic testing and broader insurance issues. Weighing risks and benefits and resolving ethical issues with genetic testing decisions and communication of test results involves consideration of the core ethical principles in addition to assessment of both professional and patient obligations. Careful consideration is needed in weighing competing obligations. Understanding ethical issues currently experience din genetics clinics will help guide the handling of similar and novel future challenges that will arise with advances in genetic testing and genomic medicine.
Wendy R. Uhlmann, MS, CGC, is the genetic counselor/clinic coordinator of the Medical Genetics Clinic at the University of Michigan. She is a Clinical Assistant Professor in the Departments of Internal Medicine and Human Genetics and an executive faculty member of the genetic counseling training program. Wendy Uhlmann is a past president of the National Society of Genetic Counselors and currently serves on the National Center for Biotechnology Information (NCBI) Board of Scientific Counselors (BOSC), Medical Genetics Working Group.
Supporting information for: 2013 CBSSM Research Colloquium and Bishop Lecture (Ruth Macklin, PhD)
PhotoVoice: Promoting individual wellbeing and improving disaster response policies in Japan and beyond
Mieko Yoshihama, PhD, ACSW, LMSW, Professor, School of Social Work, University of Michigan
Co-authors: Yukiko Nakamura, Ochanomizu University Department of Interdisciplinary Gender Studies, Tokyo, Japan; Tomoko Yunomae, Women's Network for East Japan Disaster
Conducted in collaboration with local women’s organizations, PhotoVoice Project is aimed at strengthening gender-informed disaster policies and response in Japan by engaging the very women affected by the disasters in the analyses of their own conditions and advocacy efforts. PhotoVoice, a method of participatory action research, involves participants taking photographs of their lives and communities, followed by a series of small-group discussions about their experiences while sharing their photographs (Wang & Burris, 1997).
After the Great East Japan Disasters of March 11, 2011, a diverse group of women (N=35) in five localities in the most disaster-affected areas of northern Japan participated in PhotoVoice group discussions (4-7 sessions in each location). A significant minority of the participants have been assisting other disaster victims as part of their regular employment or through volunteer effort.
The participants’ photographs and narratives identified various ways in which Japanese sociocultural and structural factors affected women’s vulnerabilities in and after disasters. Traumatic stress and compassion fatigue were prevalent, yet denial and suppression were common response. Facilitated group discussions served as a collective space for grieving the loss and rebuilding their lives. Through repeated group discussions, participants also questioned and identified limitations and failures of the current disaster policies as well as those concerning nuclear energy. Also evident were participants’ increased interest and desire to speak out, similar to the processes of politicalization and conscientization/conscientização (Freire, 1970).
Findings of the project elucidate how individuals respond to trauma, dislocation, and devastation; how individual experiences are influenced by sociocultural and structural forces; and how individuals make sense of disaster and structural inequity, and to formulate action to address them. Findings of the project also suggest that participatory action research such as PhotoVoice could promote participants’ growth and wellbeing by providing space for collective reflections, rebuilding, and action.
Mieko Yoshihama is a Professor of Social Work at the University of Michigan. Dr. Yoshihama's research interests are violence against women, immigrants, mental health, and community organizing. Combining research and social action at local, state, national, and international levels over the last 25 years, Dr. Yoshihama focuses on the prevention of gender-based violence and promotion of the safety and wellbeing of marginalized populations and communities.
Representing torture of women in custody in the U.S.
Carol Jacobsen, MFA, Professor, The University of Michigan Penny Stamps School of Art & Design, Women’s Studies; Human Rights Director, Michigan Women’s Justice & Clemency Project
More than a decade ago, Amnesty International launched its first ever campaign on torture in the U.S. Working with human rights activists, including prisoners, attorneys, artists, and others, the ongoing campaign has focused on the four point chaining, rape, retaliation, medical neglect and other forms of abuse of women occurring in U.S. prisons. As a grassroots, feminist filmmaker working with Amnesty on this issue, in my role as Director of the Michigan Women’s Justice & Clemency Project, and as an educator of visual art, women’s studies and human rights, many questions arise about issues of state and individual power, gender, race, representation, exploitation, censorship and voice as we struggle to make torture a visible and public issue in order to ultimately end it. This presentation will include an excerpt from my film, Segregation Unit.
Segregation Unit, 30 min., 2000
Carol Jacobsen, Director
Narrated by Jamie Whitcomb following her release from prison, the film documents the torture she and many others have suffered (and continue to suffer) in Michigan prisons. The film includes footage shot by guards that was obtained through subpoenas and the Freedom of Information Act in connection with Whitcomb’s successful lawsuit against the State. Co-sponsored by Amnesty International, Segregation Unit is a nonprofit film available free to activists.
Carol Jacobsen is a social documentary artist whose works in video and photography draw on interviews, court files and records to address issues of women's criminalization, censorship and human rights. Her work, co-sponsored by Amnesty International, is represented by Denise Bibro Gallery in New York, and has been exhibited and screened worldwide. She has received awards from the National Endowment for the Arts, the Paul Robeson Foundation, Women in Film Foundation, Rockefeller Foundation and others. Her critical writings have appeared in the New York Law Review, Hastings Women's Law Journal, Signs Journal, Social Text, Art in America and other publications. She teaches Art, Women's Studies and Human Rights at UM, and serves as Director of the Michigan Women's Justice & Clemency Project, a grassroots advocacy and public education effort for freedom and human rights for incarcerated women.
Do non-welfare interests play a role in willingness to donate to biobanks?
Michele C. Gornick, PhD, Postdoctoral Research Fellow, VA Health Science, Research & Development and CBSSM, University of Michigan
Co-authors: Tom Tomlinson, PhD, Kerry Ryan, MA and Scott Kim, MD, PhD
Ethical debate has focused on protecting donor welfare and privacy interests. Little attention has been given to individual donor concerns about the moral, societal, or religious implications of research using their donation. The current study explores the impact of non-welfare interests (NWIs) on participants’ willingness to donate de-identified tissue samples and medical records to biobanks through an experimental online survey (N=1276; 46.3% women; 19.6% racial minority). Participants were more likely to donate to biobanks for NWI topics commonly associated with ‘science’ and medical research (evolution and stem cell research) than unfamiliar uses of biosamples (commercialization/corporate profit and risk assessment by insurance companies). In addition, mode (single vs. multiple scenario) and timing (before vs. after blanket consent) of NWI disclosure affect individual’s willingness to donate. Further, key subject characteristics influence participants’ willingness to donate, even after controlling for NWI scenario assignment (Racial minorities: OR = 0.59, 98% CI 0.34, 0.99, Evangelical Christians: OR = 0.55, 98% CI 0.35, 0.89, Liberal political views: OR = 1.66, 98% CI 1.06, 2.60). These data suggest that NWI issues have complex dimensions that require careful elicitation and evaluation of people’s opinions regarding them. Further, policy recommendations for biobank donation based only on welfare and privacy may neglect other interests that are highly vales by potential donors.
Michele Gornick is a Postdoctoral Research Fellow at the VA Center for Clinical Management Research and the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. She received her PhD in Human Genetics and MA in Statistics from the University of Michigan. Her research is in translational medicine, specifically dealing with ethical issues surrounding the communication of genomic information to cancer patients, physicians and other health care providers.
Which research? Public engagement and opinions about the research use of biobank samples
C. Daniel Myers, PhD, Robert Wood Johnson Scholar in Health Policy Research, Department of Health Management and Policy, School of Public Health, University of Michigan
Daniel B. Thiel, MA, Assistant Director, Life Sciences and Society Program, School of Public Health, University of Michigan
Co-authors: Ann Mongoven, PhD, MPH; Jodyn Platt, MPH; Tevah Platt, MPH; Susan B. King; Sharon L. R. Kardia, PhD
Do potential biobank donors approve of using biobank samples for research, and do they care what kinds of research is done on their samples? We explored this question in various public engagement forums related to the Michigan BioTrust for Health, a recently established state research biobank of de-identified leftover newborn screening bloodspots. Results suggest that that the type of public engagement affects participant responses about whether research using leftover bloodspots is appropriate, and what types of research are should be conducted. In more superficial kinds of engagement participants show nearly-unanimous support for research, support that does not vary greatly across different kinds of research. However, more intensive forms of engagement find somewhat greater skepticism about research, and support that varies according to what aspect of a study is emphasized—target population, disease in question, type of analysis (e.g., genetic or not). Furthermore, more intensive engagements facilitate deeper reflection on the inherently uncertain nature of biobank research applications. This uncertainty brings issues of governance and oversight to the foreground. While there are some areas of broad consensus, there is also widespread disagreement on what kinds of research should and should not be pursued. On a practical level, this variation suggests that singular sources on public opinion may not be adequate to judge public support for biobanking, and that research and policy communities should consider best practices for eliciting educated public opinion on acceptable research. On a more conceptual level, the variety of conceptions of appropriate research uses suggests that informed consent and community oversight processes should account for this pluralistic conception of the public good.
C. Daniel Myers is a Robert Wood Johnson Scholar in Health Policy at the University of Michigan School of Public Health. His research focuses on how political communication affects public attitudes, particularly in the context of public deliberation. He is currently involved in research projects on the role of stories sin political communication as well as on public deliberation about priorities for patient centered outcome research. He received his Ph.D. in Political Science from Princeton University and his B.A. in Political Science from Allegheny College. Starting in 2013 he will be an Assistant Professor of Political Science at the University of Minnesota.
Daniel Thiel is currently the Assistant Director of the Life Sciences and Society Program at the University of Michigan where he wears many hats, including directing a community engagement research project about the Michigan BioTrust for Health. Prior to this position he taught classes in political philosophy, ethics and the philosophy of law at John Jay College in New York City. His research interests are primarily in the fields of bioethics, science and technology studies and social and political philosophy. He completed an M.A. in Philosophy at Stony Brook University and a B.A. in Philosophy at U.C. Berkeley.
Whose sense of public good? Public engagement results from the Michigan BioTrust and ethical implications
Ann Mongoven, PhD, MPH, Assistant Professor, Center for Ethics and Humanities in the Life Sciences and Department of Pediatrics and Human Development, Michigan State University
Co-author: Meta Kreiner, MSc
Can policy-makers assume a consensus on what constitutes “the public good” of a public health biobank? If not, what are the implications for biobank ethical policies? We explore these questions in relationship to public engagement on the Michigan BioTrust. The BioTrust is a recently established state research biobank of de-identified leftover newborn screening bloodspots. BioTrust guidelines require that any research using bloodspots be (a) health research and (b) in the public good. The biobank operates with an opt-out “blanket” presumed consent policy for bloodspots saved before 2010, and an opt-in blanket consent policy for bloodspots saved from 2010 onward.
Community engagement on this issue suggests pluralistic conceptions of what constitutes the public good among Michigan residents. While some types of research generate broad consensus; others generate significant disagreement. Risk/benefit assessments also vary according to both degree and kind, including: potential for scientific/medical advances, economic considerations, and individual or group risk/benefit from biobank participation. Because the bloodspots come from children, some focus on benefits/risks for children; others do not. These results suggest pluralistic conceptions of what constitutes “public good” are at play when citizens assess both if and when the state should use biobank samples for research, and also whether they should allow research on their own children’s bloodspots.
The results also have implications regarding informed consent processes and community oversight for a bloodspot biobank. Lack of consensus on what research is “in the public good” adds empirical weight to ethical requirements that biobanks inform donors before using their bloodspots for research, make lay research descriptions available, include community oversight in biobank governance, and ensure an opt-out mechanism. They suggest the worthiness of considering “by-study” or “tiered” consent options while underscoring their practical challenges. Significantly, even blanket consent and community oversight processes can be improved by acknowledging lack of consensus on what constitutes the public good as a risk of participation.
Ann Mongoven is an Assistant Professor at the Center for Ethics and Humanities in the Life Sciences, Michigan State University. She earned her Ph.D. in religious studies/ethics from the University of Virginia and a M.P.H. from the Johns Hopkins University Bloomberg School of Public Health. Mongoven is also a Michigan State University Lilly Teaching Fellow.
Citizen recommendations for communication about biobank participation and consent: Considering source, message, channel, receiver, and timing
Andrea C. Sexton, BA, Master of Arts Student, Health and Risk Communication, College of Communication Arts and Sciences, Michigan State University
Co-authors: Ann Mongoven, PhD, MPH; Meta Kreiner, MSc
Source, message, channel, and receiver are fundamental factors in models of the communication process. Public and clinical health practitioners must consider these factors in order to design effective health communication. This paper a) reports citizen recommendations for a multi-faceted educational campaign on the Michigan Biotrust; b) analyzes these recommendations by source, message, channel, and receiver characteristics; and c) argues that integrating these recommendations with communication theory suggests both practical strategies for recommendation implementation and extensions of theoretical models of the communication process.
The Michigan BioTrust for health is a state research biobank containing bloodspots leftover after newborn bloodspot screening. In November of 2011, seven deliberative processes engaged a representative sample of Michigan citizens. Five sessions were conducted in-person, each in a different Michigan city. Two sessions were run as Facebook discussion groups.
The primary recommendation from these juries is a multi-faceted campaign to increase public awareness of the BioTrust and its consent processes. The deliberators propose specific suggestions about who should provide information, what content should be communicated, the mediums through which education should occur, and their impressions of citizen responses to current and recommended BioTrust communications.
In addition to identifying source, message, channel, and receiver characteristics, jury participants distinctly emphasize the importance of communication timing. They consider the effect of timing on receivers’ motivation and ability to process information, investigate their options, and ask questions. They also suggest a relationship between timing of communication about the Biotrust and public attitude toward the BioTrust.
Exploring jury participants’ suggestions for education about the BioTrust has implications for clinical interactions, health education curriculums, and mass media campaigns regarding informed consent for biobanks, as well as ethical solicitation of biobank participation. Additionally, emphasis on timing as a key factor in communication may warrant further consideration in theoretical models of the communication process.
Andrea Sexton is a candidate for a Master’s of Arts in Health & Risk Communication at Michigan State University where she is a research assistant in the Center for Ethics and Humanities in the Life Sciences on a project researching community engagement on the Michigan BioTrust for Health. She has also contributed to health communication research on hand washing, health website quality, nutritional labeling, and community engagement in sustainable food system development. Andrea’s research interests include community engagement in health and environmental issues and health and risk decision making. She completed her B.A. in Linguistics & Psychology at the University of Michigan.
Comparing male and female BRCA mutation carriers’ communication of their BRCA test results to family members
Monica Marvin, MS, Associate Director of the Genetic Counseling Program; Genetic Counselor in the Cancer Genetics Clinic; Clinical Assistant Professor; University of Michigan, Department of Human Genetics and Internal Medicine
Co-authors: Heidi Dreyfuss, MS; Lindsay Dohany, MS; Kara Milliron, MS; Sofia Merajver, MD, PhD; Elena Stoffel, MD, MPH; Beverly Yashar, MS, PhD; and Dana Zakalik, MD
Current national guidelines state that patients with positive BRCA results should be urged to notify at-risk relatives. Most research on communication of BRCA results is limited to communication by females and suggests that communication to males occurs less frequently.
The objective of this exploratory study is to identify gender-related characteristics in communication of BRCA results to improve familial communication.
677 individuals who received genetic counseling from three clinics in Michigan were invited to participate. Subjects completed a 34-item survey comprised of novel and previously published questions exploring whom they informed, information shared, method of communication, and factors impacting the decision to undergo testing and disclose results. Communication patterns were examined within the entire cohort and comparisons were made between males and females.
Participants included 35 males and 202 females. Overall greater than 78% of parents shared their test results with at least one of their children with a greater percentage of fathers disclosing to their children than mothers. The disclosure was mostly done in-person and the information shared did not vary much between genders except a greater proportion of mothers with daughter(s) discussed the impact genetics can have on their daughter’s medical management than fathers with their daughter(s). For both males and females, the top reasons for disclosing to children included: 1) wanting to inform them about their risk, 2) feeling the results will impact management, 3) wanting to encourage testing, and 4) having a close relationship.
In genetic counseling, gender of a BRCA mutation carrier does not appear to greatly affect the frequency or method of communication of test results. Furthermore, we found that communication to male and female relatives occurred with a similar frequency. This suggests that current practice effectively enables comprehensive family communication.
Monica Marvin is a Clinical Assistant Professor in the Department of Human Genetics who serves as the Associate Director of the University of Michigan Graduate Program in Genetic Counseling. She also functions as a clinical genetic counselor in the UM Cancer Genetics Clinic. Monica obtained her Masters Degree in genetic counseling from the University of Michigan in 1994. Prior to returning to the University of Michigan in 2005, she worked as a genetic counselor at New Jersey Medical School and Spectrum Health in Grand Rapids, MI. In addition to her work here within the University, Monica is also active in national and state-wide efforts to advance the profession of genetic counseling.
A Gift for All: Everyone has something to give - Approaching dialysis patients about donating their organs
Allyce Smith, MSW, Program Coordinator, National Kidney Foundation of Michigan
Co-authors: Ann Andrews, MPH; Jerry Yee, MD; Holly Riley, MSW; Remonia Chapman; Ken Resnicow, PhD
The organ donor waiting list continues to grow. Individuals with End Stage Renal Disease (ESRD) are not typically viewed, by themselves or their health care team, as potential donors after death. However, ESRD patients are eligible to donate and may obtain a sense of empowerment in knowing they can give, as well as receive. Others feel that asking ESRD patients to sign up on the Donor Registry is unethical. This study will evaluate the effectiveness of using peer mentor to inform dialysis patients about their ability to sign up on the Donor Registry, ultimately increasing their numbers on the Registry.
Using a cluster randomized design, this controlled intervention study is conducted in collaboration with the National Kidney Foundation of Michigan (NKFM), the University of Michigan School of Public Health (UM SPH), Greenfield Health Systems (GHS), Henry Ford Health System, and Gift of Life Michigan. Twelve dialysis units will be randomized to an intervention or comparison group. Participants in the comparison units receive mailings about organ donation while patients in intervention units are assigned peer mentors and meet 7 times over a 4-month period. Peer mentors are individuals with ESRD who have adjusted positively to living with kidney disease and volunteer to lend support to others coping with kidney disease. Peer mentor-patient meetings cover coping with chronic illness and leaving a legacy through deceased organ donation. During the meetings, peer mentors utilize Motivational Interviewing, a person-centered method of guiding patient decision-making and strengthening motivation for change.
The primary outcome is mail/internet registrations on the Donor Registry. Pre/post surveys will be used to evaluate change in organ donation knowledge and attitudes, self-reported donation status, hope for the future, and quality of life.
To date, 150 Greenfield staff, 33 peer mentors, and over 280 patients have participated in 10 dialysis units.
Allyce Haney Smith has been a program coordinator at the National Kidney Foundation of Michigan since 2010. She graduated with her Master’s degree in Social Work from the University of Michigan. She currently coordinates the project, A Gift for All: Everyone Has Something to Give. In this role, Ms. Smith works to help empower patients to become more involved in their own care and end of life decisions.
Putting patient-physician communication in context: An empirical analysis of sequential organization and communication transitions during visits for new diagnoses of early stage prostate cancer.
Danielle Czarnecki, PhD Candidate, Department of Sociology, University of Michigan
Co-authors: Stephen G. Henry, MD; Valerie Kahn, MPH; Wen-Ying Sylvia Chou, PhD, MPH; Angela Fagerlin, PhD; Peter A. Ubel, MD; David R. Rovner, MD, FACP; Margaret Holmes-Rovner, PhD
Background: Patients and physicians typically schedule visits to discuss new diagnoses for which patients have multiple treatment options. How communication is organized during these visits is unknown.
Objective: To investigate the organization of communication tasks and the transitions between these tasks during visits in which patients and physicians discuss diagnosis and treatment of early stage prostate cancer.
Methods: We characterized the sequential organization of 40 visits in which patients received a new diagnosis of early stage prostate cancer. We used transcripts to identify communication tasks and develop a coding system to identify transitions between these tasks. We analyzed a) the organization of communication tasks during these visits and b) how patients and physicians communicate during transitions between tasks.
Results: We identified five major communication tasks, which typically occurred in the following sequence: diagnosis delivery, risk classification, options talk, decision talk, and next steps. Visit organization was physician-driven. Patients resisted physicians’ attempts to transition from a) options talk to decision talk and b) decision talk to next steps by requesting more information about options and clarification about the decision making process, respectively. Physicians showed resistance when patients attempted to discuss decisions before physicians finished discussing treatment options. The overall organization of communication reflected physicians’ focus on delivering a thorough discussion of treatment options. Patient speech was relatively uncommon but increased towards the end of visits. Patients showed some uncertainty about the visit purpose and their role in the decision making process.
Conclusions: In visits discussing new diagnoses of prostate cancer, the overall visit organization and communication during transitions reveal an emphasis on discussing treatment options. Physicians’ focus on discussing options fulfills an important obligation for informed consent, but may not be responsive to patients’ informational or emotional needs.
Danielle Czarnecki is a doctoral candidate in the Department of Sociology at the University of Michigan. Her dissertation research is on religion and assisted reproductive technologies. She examines how infertile Catholic and Evangelical women navigate religious and scientific discourses in their attempts to build families.