Bioethics & Humanities Annual Report

Bioethics & Humanities Annual Report 2016 2017 Bioethics & Humanities is a department within the University of Washington School of Medicine Highlights Page 0

TABLE OF CONTENTS Highlights 3 Page Scholarship Publications 5 Presentations 8 Grants/Contracts 10 Education and Community Engagement 12 Clinical Ethics Consultations 13 BH Annual Report 2016-17 Page 1

Highlights from the Department of Bioethics & Humanities Personnel Gina Campelia joined the faculty as an Assistant Professor and is leading UW School of Medicine s Ethics theme in the medical school curriculum. Deb Bowen became the Associate Director of Public Health Genetics Nancy Jecker was Visiting Professor, Chinese University of Hong Kong, Faculty of Medicine, Centre for Bioethics, Shatin, New Territories Scholarship Wylie Burke and Susan Trinidad The deceptive appeal of direct to consumer genetics. Ann Int Med 2016 Apr 19;164(8):564-5. Alice Popejoy and Malia Fullerton (2016). Genomics is failing on diversity. Nature, 538(7624): 161-4. Starks H, Doorenbos AZ, Bourget E, Lindhorst T, Aisenberg E, Oman N, Rue TC, Curtis JR, Hays R. The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden. Contemporary Clinical Trials. 2016;49:15-20. doi 10.1016/j.cct.2016.05.004. PMCID in progress. Deb Bowen, Changing the housing environment to reduce obesity in public housing residents: A cluster randomized trial, BMC Public Health Nancy Jecker, 2016. Advance Care Planning: What Gives Prior Wishes Normative Force? Asian Bioethics Review 8(3): 195-210, Special issue on Dying Well, B Steinbock, P Menzel, eds. Education and Community Engagement The 30 th annual Summer Seminar in Healthcare Ethics, featuring Dr. Kayhan Parsi and Bioethics & Humanities faculty, had 86 with high satisfaction ratings (xxx). The Departments of Surgery & Bioethics & Humanities launched the 1 st Annual Surgical Ethics Conference. The Graduate Certificate in Palliative Care program continues with Helene Starks, PhD, MPH as core faculty. Bioethics Grand Rounds hosted four events including a combined Surgical Ethics Grand Rounds with the Department of Surgery. Malia Fullerton presented; "Benefits, misconceptions, and pitfalls of biomedical research", as part of the Engaging Communities to Participate in Biomedical Research and Precision Medicine Opportunities panel, National Latino Cancer Summit, San Francisco, July 2016. MA Bioethics Alum Danae Dotolo, was selected as one of six 2016-2017 Magnusson Scholars. National Leadership Denise Dudzinski was elected Secretary and Nancy Jecker was elected Director of the American Society for Bioethics & Humanities. In 2015, Erika Blacksher was appointed to the Ethics Code Task Force, American Public Health Association, which is revising the Public Health Ethics Code of the American Public Health Association 2002 BH Annual Report 2016-17 Page 3

Deb Bowen won the lifetime achievement award for LGBT health from the Gay and Lesbian Medical Association Malia Fullerton was invited to join the Population Screening Working Group, Genomics and Population Health Action Collaborative (GPHAC), Roundtable on Genomics and Precision Health, National Academies of Sciences, Engineering, and Medicine Clinical Ethics Consultation UW Medicine Ethics Consultation Service provided 128 clinical ethics consults, and numerous organizational ethics consults across three institutions, Harborview Medical Center, University of Washington Medical Center, and Northwest Hospital. BH Annual Report 2016-17 Page 4

SCHOLARSHIP Publications: 29 Peer-reviewed Papers/Professional Organization Statements: 20 Commentaries/Editorials/Letters: 3 Book Chapters: 6 Peer-reviewed Papers 1. Van Dyke ER, Blacksher E, Echo-Hawk AL, Bassett D, Harris R, Buchwald D. Health Disparities Research among Small Tribal Populations: Describing Appropriate Criteria for Aggregating Tribal Health Data. Am J Epidemiol 2016;184(1):1-6. PMID: 27268030. PMCID: PMC4929243. DOI: 10.1093/aje/kwv334. 2. Blacksher E, Nelson C, Van Dyke ER, Bassett D, Echo-Hawk AL, Buchwald DS. Conversations about Community-Based Participatory Research and Trust: We Are Explorers Together Prog Community Health Partnersh Summer 2016;10(2):305-9. PMID: 27346777. DOI: 1353/cpr.2016.0039. 3. Naughton,MJ, Brunner,RL,Hogan, P, Danhauer, 3 SC, Brenes, GA, Bowen,DJ, Snively, B, Goveas, JS,Taiyab Nazmus Saquib, A, Zaslavsky, O, Shumaker, SA, Global quality of life among WHI women aged 80 years and older J Gerontol A Biol Sci Med Sci (2016) 71 (Suppl 1): S72-S7 4. Condit CM, Shen L, Johnson CO, Korngiebel DM, Bowen DJ, Edwards KL. Participant s role expectation in genetics research and re-consent: Revising the theory and methods of mental models research relating to roles. J of Health Communication; 2016, 21(sup2):16-24 5. Quintiliani LM, Mann DM, Puputti M, Quinn E, Bowen DJ. Pilot and Feasibility Test of a Mobile Health-Supported Behavioral Counseling Intervention for Weight Management Among Breast Cancer Survivors. JMIR Cancer. 2016 Jan-Jun;2(1). pii: e4. 6. Brazg, T, T Lindhort, DM Dudzinski, B. Wilfond. 2016. Defining Patient Advocacy for the Context of Clinical Ethics Consultation: A Review of the Literature and Recommendations for Consultants. Journal of Clinical Ethics 27:2, 176-184. 7. Dudzinski, DM. 2016. Navigating Moral Distress Using the Moral Distress Map. Journal of Medical Ethics. March 11.doi:10.1136/medethics-2015-103156 8. Lang, KR, CY Dupree, AA Kon, DM Dudzinski. 2016. Calling Out Implicit Racial Bias as a Harm in Pediatric Care. Cambridge Quarterly of Healthcare Ethics. 25:3, 540-52. 9. Edwards KA, Terry SF, Gold D, Horn EJ, Schwartz M, Stuart M, Vernon SD. Realizing our potential in biobanking: Disease advocacy organizations enliven translational research. Biopreserv Biobank. 2016 Aug;14(4):314-8. 10. Malen, RC, Knerr, S, Delgado, F, Fullerton, SM, & Thompson, B (2016). Rural Mexican-Americans' perceptions of family health history, genetics, and disease risk: implications for disparities-focused research dissemination. Journal of Community Genetics, 7(1): 91-96. 11. Green RC, Goddard KAB, Jarvik GP, Amendola LM, Appelbaum PS, Berg JS, Bernhardt BA, Biesecker LG, Biswas S, Blout CL, Bowling KM, Brothers KB, Burke W, Caga-Anan CF, Chinnaiyan AM, Chung WK, Clayton EW, Cooper GM, East K, Evans JP, Fullerton SM, Garraway LA, Garrett JR, Gray SW, Henderson GE, Hindorff LA, Holm IA, Lewis MH, Hutter CM, Janne PA, Joffe S, Kaufman D, Knoppers BM, Koenig BA, Krantz ID, Manolio T, McCullough L, McEwen J, McGuire A, Muzny D, Myers RM, Nickerson DA, Ou J, Parsons DW, Petersen GM, Plon SE, Rehm HL, Roberts JS, Robinson D, Salama JS, Scollon S, BH Annual Report 2016-17 Page 5

Sharp RR, Shirts BH, Spinner NB, Tabor HK, Tarczy-Hornoch P, Veenstra DL, Wagle N, Weck K, Wilfond BS, Wilhelmsen K, Wolf SM, Wynn J, Yu JH, for the CSER Consortium (2016). Clinical Sequencing Exploratory Research Consortium: accelerating the evidencebased practice of genomic medicine. American Journal of Human Genetics, 98(6):1051-66. 12. Chalmers, D, Nicol, D, Kaye, J, Bell, J, Campbell, AV, Ho, CWL, Kato, K, Minari, J, Mitchell, C, Molnár-Gábor, F, Otlowski, M, Thiel, D, Fullerton, SM, & Whitton, T (2016). Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Medical Ethics, 17(1):39. 13. Smith, CE, Fullerton, SM, Dookeran, KA, Hampel, H, Tin, A, Maruthur, NM, Schisler, JC, Henderson JA, Tucker, KL, & Ordovás, JM (2016). Using genetic technologies to reduce, rather than widen, health disparities. Health Affairs, 35(8): 1367-1373. 14. Richards, JE, Bane, E, Fullerton, SM, Ludman, EJ, & Jarvik, GP (2016). Allocation of resources to communication of research result summaries: biobank participant perspectives. Journal of Empirical Research on Human Research Ethics, 11(4):364-369. 15. Popejoy, AB & Fullerton, SM (2016). Genomics is failing on diversity. Nature, 538(7624): 161-4. 16. Korngiebel, DM, Fullerton, SM, & Burke, W (2016). Patient safety in genomic medicine: an exploratory study. Genetics in Medicine, 18(11):1136-1142. 17. Smith, ME, Sanderson, SC, Brothers, KB, Myers, MF, McCormick, J, Aufox, S, Shrubsole, MJ, Garrison, NA, Mercaldo, ND, Schildcrout, JS, Clayton, EW, Antommaria, AH, Basford, M, Brilliant, M, Connolly, JJ, Fullerton, SM, Horowitz, CR, Jarvik, GP, Kaufman, D, Kitchner, T, Li, R, Ludman, EJ, McCarty, C, McManus, V, Stallings, S, Williams, JL, & Holm, IA (2016). Conducting a large, multi-site survey about patients views on broad consent: challenges and solutions. BMC Medical Research Methodology, 16 (1):162. 18. Jecker, NS. 2016. Advance Care Planning: What Gives Prior Wishes Normative Force? Asian Bioethics Review 8(3): 195-210, Special issue on Dying Well, B Steinbock, P Menzel, eds. 19. Brown C, Jecker NS, Curtis JR, 2016. Inadequate Palliative Care in Chronic Lung Disease: An Issue of Health Care Inequality Annals of the American Thoracic Society, DOI: 10.1513/AnnalsATS.201510-666PS. 20. Starks H, Doorenbos AZ, Bourget E, Lindhorst T, Aisenberg E, Oman N, Rue TC, Curtis JR, Hays R. The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden. Contemporary Clinical Trials. 2016;49:15-20. 21. Coats H, Paganelli T, Starks H, Lindhorst, T, Starks Acosta A, Mauksch L, Doorenbos A. A community needs assessment for the development of a an interprofessional palliative care training curriculum. Journal of Palliative Medicine, 2017; 20(3):235-40. 22. Richards C, Starks H, O Connor MR, Doorenbos AZ. Elements of family-centered care in the pediatric intensive care unit: An integrative review. Journal of Palliative Care Nursing, 2017; 19(3):238-46. 23. Coats H, Bourget E, Starks H, Oman N, Lindhorst T, Curtis JR, Hays R, Doorenbos AZ. There s gotta be some balance. Nurse reflections on the benefits and challenges of implementing family-centered care in the PICU. American Journal of Critical Care, 2017; in press. Commentaries/Editorials/Letters Campelia, GD. Jan 27, 2016. Integration without Reduction: What the Philosophy of Empathy can Learn from Mirror Neurons, The Neuroethics Blog, AJOB Neuroscience BH Annual Report 2016-17 Page 6

Fullerton, SM (2016). No panacea: Next-Gen Sequencing will not mitigate adoptees lack of genetic family health history (Peer Commentary on May et al., Does lack of Genetic Relative Family Health History represent a potentially avoidable health disparity for adoptees?). American Journal of Bioethics, 16(12):41-43. Dudzinski, DM. 2016.Quality Attestation from the Inside. American Journal of Bioethics. 16:3, 27-8 Book Chapters 1. Blacksher E. Ethical Tools to Promote Health in the 21st Century: An Argument Against Stigma. In The Handbook of Stigma, Discrimination and Health, Link B, Dovidio J, Major B., eds. (New York, NY: Oxford University Press forthcoming 2017), in press. 2. Blacksher E. Obesity Prevention in Children: Media Campaigns, Stigma, and Ethical Considerations (Case Study). Public Health Ethics: Cases Spanning the Globe, Barrett DH, Ortmann LH, Dawson A, Saenz C, Reis A, Bolan G, eds. (New York, NY: Springer International Publishing 2016), also available online http://www.springer.com/us/book/9783319238463 3. Blacksher E, Goold SD. Black-White Infant Mortality: Disparities, Priorities, and Social Justice in Public Health (Case Study). Public Health Ethics: Cases Spanning the Globe. Barrett DH, Ortmann LH, Dawson A, Saenz C, Reis A, Bolan G, eds. (New York, NY: Springer International Publishing 2016), also available online http://www.springer.com/us/book/9783319238463 4. Coughlin, SS, Bowen, DJ, and Youngbloom, E. Breast cancer screening, in Handbook of Community-based Participatory Research, edited by Steven S. Coughlin, Selina A. Smith, and Maria E. Fernandez, Oxford University Press: New York, 2016. 5. Clark JD, Dudzinski DM. 2016. Chapter 66: Ethical Considerations. In SP Dunn, S Horslen (Eds.), Solid Organ Transplantation in Infants and Children. Switzerland: Springer International Publishing. 6. Jecker, NS, 2016. Medical Futility and Respect for Patient Autonomy. In John K. Davis Handbook on End of Life Ethics, Routledge Publishing Company: 139-151. BH Annual Report 2016-17 Page 7

Presentations: 30 National or International Meetings: 17 Conferences/Workshops/Grand Rounds: 12 Visiting Professorships: 1 Erika Blacksher "Rethinking Responsibility for Health: A Social Connection Model." The Sickness of Society: What Kind of Inequality Matters for Health? Benjamin Rabinowitz Workshop. University of Washington, Seattle, Washington. April 29, 2016. "Translating Science and Health Policy in Polarized Political Contexts. RWJF Health & Society Scholars at Columbia University, Final Mini-Conference. Columbia University Population Research Center. April 21, 2016. Free Speech and Safe Space Panel. First Annual Discussion. Associated Students of the University of Washington. Seattle, Washington. November 16, 2016. "Who Is Responsible for Health?" MedTalk. University of Washington Medlife Chapter. Seattle, Washington. February 19, 2016. Gina Campelia American Society for Bioethics and Humanities Annual Meeting, Paper: Caring for Pregnant Women: How the Principle of Respect for Autonomy is Failing Us, Oct 8, 2016. Denise Dudzinski The Ethics of Destination Therapy: When a Bridge Becomes the Journey s End. American Academy of Medical Colleges Annual Meeting, Seattle, Washington, November 11, 2016. Moral Distress. Veteran s Health Administration Ethics Committee. Seattle, WA, May 3, 2017 Ethics in Extracorporeal Life Support,, University of Washington Medical Center & Harborview Medical Center ECLS Nurses, March 22, 2016 Ethics Committees & Consultation Services. Overlake Hospital. Bellevue, Washington, September 28, 2016. (for the Overlake Hospital Ethics Committee) Project Echo- Geriatrics. Informed Consent & Shared Decision Making. December 16, 2016. (for regional physicians) BH Annual Report 2016-17 Page 8

Kelly Edwards Caga-anan EC, Dawson L, Edwards K, Helmers KF, Merritt M, Starks H. Navigating federal funding for bioethics research: From soup to nuts. Half-day, pre-conference workshop, American Society for Bioethics and Humanities, (ASBH) Annual Meeting, Washington, DC. October 6, 2016. Ethics of engagement, Alpha-1 Foundation Annual Meeting, Bethesda, March 2016 Regulatory and policy landscape: facilitators and barriers for community engaged research, PCORNet Building Trustworthiness Conference, Panel Moderator and Meeting Planning Committee, Washington DC March 2016 Malia Fullerton Working dinner on ELSI issues: enhanced diversity in clinical sequencing: preparing for CSER2 (with V Bonham & BA Koenig), Clinical Sequencing Exploratory Research (CSER) Consortium National Meeting, Bethesda, MD, September 2016 On the use of race and ethnicity in genetic research, Use of Race/Ethnicity in Genomics and Biomedical Research workshop, National Institutes of Health, Bethesda, MD, October 2016 Big data and the pursuit of precision medicine: challenges for research oversight, Ethics and Regulation in the Digital Age, Northwest Association for Biomedical Research and Quorum Annual Conference, Seattle, July 2016 Benefits, misconceptions, and pitfalls of biomedical research, Invited Panelist, Engaging Communities to Participate in Biomedical Research and Precision Medicine Opportunities, National Latino Cancer Summit, San Francisco, July 2016 Ethical issues in clinical genomics, Distinguished Guest Speaker, GeNOM ALVA Project Summer Seminar Series, University of Washington, Seattle, July 2016 Adventures in precision medicine: a major public research initiative and its implications for healthcare consumers and institutions, National Network of Libraries of Medicine Pacific Northwest Region (NN/LM PNR) Rendezvous Series, Seattle, September 2016 Nancy Jecker Visiting Professor, Chinese University of Hong Kong, Faculty of Medicine, Centre for Bioethics, Shatin, New Territories, Hong Kong, July 2016. Keynote Address, Chinese University of Hong Kong, Faculty of Medicine, Centre for Bioethics, Shatin, New Territories, Hong Kong, International Workshop on Genetic Enhancement, presentation on Future People as Research Subjects: CRISPR-Cas9 Engineering of the Human Germline, July 2016. Invited Speaker, Chinese University of Hong Kong, Department of Philosophy and Faculty of Medicine, Centre for Bioethics, Shatin, New Territories, Hong Kong, presentation on Age- Based Inequalities in Health and Health Care: An Ethics Framework, July 2016. BH Annual Report 2016-17 Page 9

National University of Singapore, Yong Loo Lin School of Medicine, Centre for Biomedical Ethics, Singapore, Presentation on Preparing Health Care Systems to Care for Aging Populations: An Ethics Framework, July 2016. Saw Swee Hock School of Public Health, Singapore, Presentation on Ethics in the Allocation of Scarce Healthcare Resource, July 2016. National University of Singapore, National University Hospital, Department of Emergency Medicine, Singapore, Grand Rounds presentation on When Not to Rescue Victims of Sudden Cardiac Arrest: An Ethical Analysis of Best Practices for CPR and Emergency Cardiac Care, July 2016 Helene Starks Washington s experience with the Death with Dignity Act 2009-2014. Harborview Ethics Forum, April 13, 2016. Spring policy forum on the End of Life Option Act. Panelist, Institute for Health & Aging, University of California at San Francisco, San Francisco, CA, May 10, 2016. Lessons on dying in Washington. Panelist, End-of-Life Discussion Series: Inaugural Event. Stanford University, Palo Alto, CA, May 12, 2016. Qualitative research methods. Workshop co-leader, Kathleen Foley Palliative Care Retreat, Quebec City, Canada, October 25, 2016. Moving forward into the future with health services research. Akron Children s Hospital, Akron, OH, December 6, 2016. Grants and Contracts New Awards DNA Repair Therapies for Ovarian Cancer Dana-Farber/Harvard Cancer Center Deb Bowen, PhD, Co-I Integrated Versus Referral Care for Complex Psychiatric Disorders in Rural FQHC s Patient Centered Outcomes Research Institute Deb Bowen, PhD, Co-I Program on Genetic and Dietary Predictors of Drug Response in Rural and AI/AN Populations NIGMS Wylie Burke, MD, PhD, PI Sue Trinidad, research scientist Campus-Community Capacity Building for Climate Change Research and Adaptation BH Annual Report 2016-17 Page 10

NIH Kelly Edwards, PhD, Co-I Interdisciplinary Center for Exposures, Diseases, Genomics, and Environment NIH Kelly Edwards, PhD, key personnel TopMed Data Coordinating Center Supplement NHLBI Malia Fullerton, DPhil, key personnel Rare Variants and NHLBI Traits in Deeply Phenotyped Cohorts NHLBI Wylie Burke, MD, PhD, key personnel Healthier Washington Initiative Evaluation Project Washington State Health Care Authority Deb Bowen PhD, Co-I Implementation evaluation of home-based palliative care ACO pilot program. Stupski Foundation Helene Starks, PhD, MPH, Co-I and PI on UW subcontract BH Annual Report 2016-17 Page 11

EDUCATION and COMMUNITY ENGAGEMENT UWMC Bioethics Grand Rounds A Romp in the PARC: Research on Medical Practices Public Attitudes for Research Consent Benjamin S. Wilfond, MD February 2016 Joint Bioethics Grand Rounds, Co-sponsored by the Department of Surgery Ethics and Surgical Ethics: Same and Different Robert M. Sade, MD October 2016 30 th Annual Summer Seminar in Healthcare Ethics, July 31-August 4, 2017 Total attendees: 93 1 st Annual Surgical Ethics Conference, August 5, 2017 Seattle, WA Palliative Care Certificate Program Biomedical Research Integrity Program Total participants: 385 Bioethics & Humanities MA Program 2017 graduates: Crystal Brown Kristi Klee Leah Kroon Abby Rosenberg Anna Snyder Tyler Tate UW School of Medicine Ethics Curriculum Development In 2017, created the ethics content for the Ecology of Health and Medicine, which is a new course for the UW Medical School curriculum. Ethics sessions in the curriculum include: Adolescent Adherence, Ethics of Carrier Testing, Lessons from Tuskegee, Care Ethics and Sickle Cell Disease, History of Bioethics, Individual Responsibility in the Profession, Ethical Values, Obligations and Virtues in Communities Topics include: autonomy & relational autonomy, beneficence, virtues in the profession, culture of medicine, care ethics, medical futility, informed consent, casuistry, and more. BH Annual Report 2016-17 Page 12

Ethics CONSULTATIONS at UW Medicine Hospitals University of Washington Medical Center 49 Harborview Medical Center 65 Northwest Hospital 14 BH Annual Report 2016-17 Page 13

BH Annual Report 2016-17 Page 14