Kelly Fryer-Edwards, Ph.D.Kelly Fryer-Edwards, Ph.D.Associate Professor, BioethicsAssociate Professor, Bioethics

University of Washington School of University of Washington School of MedicineMedicine

Ethics of Dissemination: Ethics of Dissemination: Thinking Through Our Thinking Through Our

ResponsibilitiesResponsibilities

Science and the Public Science and the Public InterestInterest

► How does our work contribute to, or engage, How does our work contribute to, or engage, the public interest?the public interest? What role does dissemination play in engaging What role does dissemination play in engaging

the public?the public?

► What obligations do we have as What obligations do we have as researchers?researchers? How can we use dissemination to fulfill our How can we use dissemination to fulfill our

obligations as researchers? obligations as researchers?

► What ethical issues come up in your work?What ethical issues come up in your work? What are the ethics of dissemination?What are the ethics of dissemination?

Who funds your research?Who funds your research?

►Do you have different obligations Do you have different obligations depending on funder?depending on funder? Federal funding (public)Federal funding (public) Foundation funding (private)Foundation funding (private) Industry fundingIndustry funding Departmental/institutional fundingDepartmental/institutional funding No fundingNo funding

Where do you publish?Where do you publish?

Scientific or professional journalsScientific or professional journals Trade or practice-based publicationsTrade or practice-based publications NewslettersNewsletters

► Professional, practice-based, or community-basedProfessional, practice-based, or community-based

NewspapersNewspapers► Op-ed, Commentary, Press releasesOp-ed, Commentary, Press releases

Websites Websites ► Consumer-oriented, educational, blogsConsumer-oriented, educational, blogs

RadioRadio Classroom materialsClassroom materials

Other dissemination routes?Other dissemination routes?

►What about returning results back to What about returning results back to individuals? Institutions? Community individuals? Institutions? Community health boards? health boards?

►What about publishing in areas outside What about publishing in areas outside of your specialty?of your specialty?

►Where will your results make the Where will your results make the biggest impact? biggest impact?

►What are your goals of dissemination?What are your goals of dissemination?

Goals of disseminationGoals of dissemination

► To summarize findingsTo summarize findings► To fulfill contract with funderTo fulfill contract with funder► To contribute to a professional conversationTo contribute to a professional conversation► To advance the fieldTo advance the field► To share insights across fieldsTo share insights across fields► To shape future research questions and To shape future research questions and

agendasagendas► To raise awarenessTo raise awareness► To change practiceTo change practice► To show respect and appreciationTo show respect and appreciation► To increase science literacyTo increase science literacy

What is at stake?What is at stake?

►Thesis: Trustworthy practices in Thesis: Trustworthy practices in research are going to be critical to long-research are going to be critical to long-term successterm success

►Problem: Traditional research practices Problem: Traditional research practices may no longer preserve public trust may no longer preserve public trust

►Proposed Solution: Transformed Proposed Solution: Transformed practices along the research pathway practices along the research pathway are needed.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

ArgumentArgument

► Usual research practices can (without intention) Usual research practices can (without intention) lead to harm for communities, including:lead to harm for communities, including:

Samples shared widely beyond investigator Samples shared widely beyond investigator group with whom relationship/trust establishedgroup with whom relationship/trust established

Focus on scientific literature for disseminationFocus on scientific literature for dissemination

Research reports often focus on Research reports often focus on describingdescribing the the problem, or use “deficit model” language problem, or use “deficit model” language

Promise of benefits do not get back to Promise of benefits do not get back to participantsparticipants

Trustworthy OrganizationsTrustworthy Organizations► Attend to relationships Attend to relationships ► Demonstrate accountabilityDemonstrate accountability► Strive for transparency in processStrive for transparency in process► Launch sustained efforts Launch sustained efforts

Foster habits of mind, not “phases” of workFoster habits of mind, not “phases” of work Proactive – seek out improvement opportunitiesProactive – seek out improvement opportunities

► Work on multiple levels Work on multiple levels locally and nationallylocally and nationally within the institution and the communitywithin the institution and the community

Yarborough et al. 2009Yarborough et al. 2009

TIESTIES22

Trust, Integrity, and Ethics in ScienceTrust, Integrity, and Ethics in Science

► Community feedback about research needs:Community feedback about research needs: RelationshipsRelationships

► Engage publics before starting to do a projectEngage publics before starting to do a project► Identify concerns and opportunitiesIdentify concerns and opportunities► Educate about research processes, tech transferEducate about research processes, tech transfer► Establish communication channels (bi-directional)Establish communication channels (bi-directional)

AccountabilityAccountability► Develop mechanism for shared authorityDevelop mechanism for shared authority► Traceable samples so participants can learn who has Traceable samples so participants can learn who has

their samples, for what purposetheir samples, for what purpose► Appreciate need for specific opt-out or withdrawalAppreciate need for specific opt-out or withdrawal

► Denver October 2008 Denver October 2008

Growing a CultureGrowing a Culture

Hudson 2003; Yarborough et al. 2009

From multi- to From multi- to interdisciplinaryinterdisciplinary

Translational Research CycleTranslational Research Cycle

What outcomes

result?

What health-related research is undertaken?

How do current outcomes influence

thinking about health-related research? T0: Problems &

opportunities

T2: Candidate health application

What determines the transition

from potential to actual health application?

T1: Discovery Research

How are opportunities

to improve health

identified & pursued?

T3:Implementation Dissemination

What determines adoption of new

health applications into practice

T4: Health Impact

W.Burke, Center for Genomics and Healthcare Equality

Reaching Your AudienceReaching Your Audience

►Who is your audience?Who is your audience? Identify an appropriate dissemination modeIdentify an appropriate dissemination mode

►What do they care about?What do they care about? Connect your work to issues, needs, Connect your work to issues, needs,

interestsinterests►Why should they care about your work?Why should they care about your work?

Create a need to know – stories, examplesCreate a need to know – stories, examples Develop a 2-minute “elevator” speechDevelop a 2-minute “elevator” speech

►Keep it simpleKeep it simple► Adapted from AAAS “Communicating Science”Adapted from AAAS “Communicating Science”

Sharpening your MessageSharpening your Message

AAAS Communicating Science

Advocacy or Action-Oriented?Advocacy or Action-Oriented?

►Scientists and scholars can participate in Scientists and scholars can participate in public debates without losing objectivity.public debates without losing objectivity. Provide informationProvide information Clarify issuesClarify issues Justify positions by making arguments clearJustify positions by making arguments clear

►The bottom line is: what impact do you The bottom line is: what impact do you want your work to have? want your work to have?

Adapted from Jane LubchencoAdapted from Jane Lubchenco

In Summary: What is at In Summary: What is at stake?stake?

► Institutional or division/unit cultureInstitutional or division/unit culture Valuing and rewarding behavior we believe Valuing and rewarding behavior we believe

should be endorsed (and not vice versa)should be endorsed (and not vice versa)

►Public trustPublic trust Fostering trustworthy behavior, even when Fostering trustworthy behavior, even when

not audited or regulatednot audited or regulated

►Career satisfactionCareer satisfaction Being part of something that is meaningfulBeing part of something that is meaningful Institutional values align with personal valuesInstitutional values align with personal values

What is your contribution?What is your contribution?

►What kind of researcher do you want to What kind of researcher do you want to be?be?

►What kind of colleague do you want to be?What kind of colleague do you want to be?

►How do you want your work to contribute?How do you want your work to contribute?

►What is your contribution?What is your contribution?

►What are your strengths, passions, What are your strengths, passions, commitments?commitments?

AcknowledgmentsAcknowledgments

► Center for Genomics & Healthcare Equality Center for Genomics & Healthcare Equality (NHGRI)(NHGRI) Wylie Burke, S. Malia Fullerton, Helene Starks Wylie Burke, S. Malia Fullerton, Helene Starks Rose James (UW and Northwest Indian College)Rose James (UW and Northwest Indian College) Bert Boyer & Scarlett Hopkins (University of Alaska, Fairbanks)Bert Boyer & Scarlett Hopkins (University of Alaska, Fairbanks)

► Testing Justice Project Testing Justice Project (Greenwall Foundation)(Greenwall Foundation) Sara Goering and Suzanne Holland (UPS)Sara Goering and Suzanne Holland (UPS)

► TIES Project TIES Project (UCD and Office of Research Integrity)(UCD and Office of Research Integrity) Gail Geller (Hopkins), Rich Sharp (Cleveland), Mark Yarborough Gail Geller (Hopkins), Rich Sharp (Cleveland), Mark Yarborough

(Colorado), and several community health leaders(Colorado), and several community health leaders

► Institute for Translational Health Sciences Institute for Translational Health Sciences (NCRR)(NCRR) Laura-Mae Baldwin, Linda Hyman (MSU), Nora DisisLaura-Mae Baldwin, Linda Hyman (MSU), Nora Disis

Science and the Public Science and the Public InterestInterest

► How does our work contribute to the public How does our work contribute to the public interest?interest? What role does dissemination play in engaging What role does dissemination play in engaging

the public?the public?

► What obligations do we have as What obligations do we have as researchers?researchers? How can we use dissemination to fulfill our How can we use dissemination to fulfill our

obligations as researchers? obligations as researchers?

► What ethical issues come up in your work?What ethical issues come up in your work? What are the ethics of dissemination?What are the ethics of dissemination?