Presentation on theme: "Kelly Fryer-Edwards, Ph.D. Associate Professor, Bioethics University of Washington School of Medicine Ethics of Dissemination: Thinking Through Our Responsibilities."— Presentation transcript:
Kelly Fryer-Edwards, Ph.D. Associate Professor, Bioethics University of Washington School of Medicine Ethics of Dissemination: Thinking Through Our Responsibilities
Science and the Public Interest ► How does our work contribute to, or engage, the public interest? What role does dissemination play in engaging the public? ► What obligations do we have as researchers? How can we use dissemination to fulfill our obligations as researchers? ► What ethical issues come up in your work? What are the ethics of dissemination?
Who funds your research? ► Do you have different obligations depending on funder? Federal funding (public) Foundation funding (private) Industry funding Departmental/institutional funding No funding
Where do you publish? Scientific or professional journals Trade or practice-based publications Newsletters ► Professional, practice-based, or community-based Newspapers ► Op-ed, Commentary, Press releases Websites ► Consumer-oriented, educational, blogs Radio Classroom materials
Other dissemination routes? ► What about returning results back to individuals? Institutions? Community health boards? ► What about publishing in areas outside of your specialty? ► Where will your results make the biggest impact? ► What are your goals of dissemination?
Goals of dissemination ► To summarize findings ► To fulfill contract with funder ► To contribute to a professional conversation ► To advance the field ► To share insights across fields ► To shape future research questions and agendas ► To raise awareness ► To change practice ► To show respect and appreciation ► To increase science literacy
What is at stake? ► Thesis: Trustworthy practices in research are going to be critical to long-term success ► Problem: Traditional research practices may no longer preserve public trust ► Proposed Solution: Transformed practices along the research pathway are needed.
Research Context and Competing Interests Policy makers Team Individual Researcher Department Funding Agencies Regulators Investigators/ Colleagues Institutions Journals
Balancing the Tensions (Linn & Starks) Endeavor of Science Obligation to Science Contribution to Discourse Objectivity The Scientist Career Responsibilities Job Responsibilities Promotion Process Resources Used Funding Obligation to Funder Responsibility of Job Moral Values of a Scientist Personal Interests Truth Telling Personal Integrity Publication Process Journal as Gatekeeper Journal Prestige
Argument ► Usual research practices can (without intention) lead to harm for communities, including: Samples shared widely beyond investigator group with whom relationship/trust established Focus on scientific literature for dissemination Research reports often focus on describing the problem, or use “deficit model” language Promise of benefits do not get back to participants
Trustworthy Organizations ► Attend to relationships ► Demonstrate accountability ► Strive for transparency in process ► Launch sustained efforts Foster habits of mind, not “phases” of work Proactive – seek out improvement opportunities ► Work on multiple levels locally and nationally within the institution and the community Yarborough et al. 2009
TIES 2 Trust, Integrity, and Ethics in Science ► Community feedback about research needs: Relationships ► Engage publics before starting to do a project ► Identify concerns and opportunities ► Educate about research processes, tech transfer ► Establish communication channels (bi-directional) Accountability ► Develop mechanism for shared authority ► Traceable samples so participants can learn who has their samples, for what purpose ► Appreciate need for specific opt-out or withdrawal ► Denver October 2008
Growing a Culture Hudson 2003; Yarborough et al. 2009
From multi- to interdisciplinary
Translational Research Cycle Translational Research Cycle What outcomes result? What health- related research is undertaken? How do current outcomes influence thinking about health- related research? T 0 :Problems & opportunities T 2 :Candidate health application What determines the transition from potential to actual health application? T 1 : Discovery Research How are opportunities to improve health identified & pursued? T 3 :Implementation Dissemination What determines adoption of new health applications into practice T 4 :Health Impact W.Burke, Center for Genomics and Healthcare Equality
Reaching Your Audience ► Who is your audience? Identify an appropriate dissemination mode ► What do they care about? Connect your work to issues, needs, interests ► Why should they care about your work? Create a need to know – stories, examples Develop a 2-minute “elevator” speech ► Keep it simple ► Adapted from AAAS “Communicating Science”
Sharpening your Message AAAS Communicating Science
Advocacy or Action-Oriented? ► Scientists and scholars can participate in public debates without losing objectivity. Provide information Clarify issues Justify positions by making arguments clear ► The bottom line is: what impact do you want your work to have? Adapted from Jane Lubchenco
In Summary: What is at stake? ► Institutional or division/unit culture Valuing and rewarding behavior we believe should be endorsed (and not vice versa) ► Public trust Fostering trustworthy behavior, even when not audited or regulated ► Career satisfaction Being part of something that is meaningful Institutional values align with personal values
What is your contribution? ► What kind of researcher do you want to be? ► What kind of colleague do you want to be? ► How do you want your work to contribute? ► What is your contribution? ► What are your strengths, passions, commitments?
Acknowledgments ► Center for Genomics & Healthcare Equality (NHGRI) Wylie Burke, S. Malia Fullerton, Helene Starks Rose James (UW and Northwest Indian College) Bert Boyer & Scarlett Hopkins (University of Alaska, Fairbanks) ► Testing Justice Project (Greenwall Foundation) Sara Goering and Suzanne Holland (UPS) ► TIES Project (UCD and Office of Research Integrity) Gail Geller (Hopkins), Rich Sharp (Cleveland), Mark Yarborough (Colorado), and several community health leaders ► Institute for Translational Health Sciences (NCRR) Laura-Mae Baldwin, Linda Hyman (MSU), Nora Disis
Science and the Public Interest ► How does our work contribute to the public interest? What role does dissemination play in engaging the public? ► What obligations do we have as researchers? How can we use dissemination to fulfill our obligations as researchers? ► What ethical issues come up in your work? What are the ethics of dissemination?