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Kelly Fryer-Edwards, Ph.D. Associate Professor, Bioethics University of Washington School of Medicine Ethics of Dissemination: Thinking Through Our Responsibilities.

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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:

1 Kelly Fryer-Edwards, Ph.D. Associate Professor, Bioethics University of Washington School of Medicine Ethics of Dissemination: Thinking Through Our Responsibilities

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3 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?

4 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

5 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

6 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?

7 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

8 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.

9 Research Context and Competing Interests Policy makers Team Individual Researcher Department Funding Agencies Regulators Investigators/ Colleagues Institutions Journals

10 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

11 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

12 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

13 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

14 Growing a Culture Hudson 2003; Yarborough et al. 2009

15 From multi- to interdisciplinary

16 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

17 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”

18 Sharpening your Message AAAS Communicating Science

19 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

20 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

21 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?

22 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

23 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?


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