2013 CBSSM Research Colloquium Abstracts and Speaker Bios
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.