Ethics of Dissemination:
Thinking Through Our
Responsibilities
Kelly Fryer-Edwards, Ph.D.
Associate Professor, Bioethics
University of Washington School of
Medicine
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
► To
► To
► To
► To
► To
► To
► To
► To
► To
summarize findings
fulfill contract with funder
contribute to a professional conversation
advance the field
share insights across fields
shape future research questions and agendas
raise awareness
change practice
show respect and appreciation
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
Regulators
Funding Agencies
Journals
Institutions
Department
Team
Investigators/
Colleagues
Individual
Researcher
Balancing the Tensions
(Linn & Starks)
Endeavor of Science
• Obligation to Science
• Contribution to Discourse
• Objectivity
Moral Values of a
Scientist
• Personal Interests
• Truth Telling
• Personal Integrity
Publication
Process
• Journal as Gatekeeper
• Journal Prestige
Funding
• Obligation to Funder
• Responsibility of Job
The
Scientist
Career
Responsibilities
• Job Responsibilities
• Promotion Process
• Resources Used
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
TIES2
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
How do current
outcomes influence
thinking about healthrelated research?
What
outcomes
result?
T0: Problems &
opportunities
T4: Health
Impact
What determines
adoption of new
health applications
into practice
T3:Implementation
Dissemination
What healthrelated research
is undertaken?
T1: Discovery
Research
T2: Candidate
health
application
How are
opportunities
to improve
health
identified &
pursued?
What determines
the transition
from potential to
actual health
application?
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
► What
is your contribution?
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
 Laura-Mae Baldwin, Linda Hyman (MSU), Nora Disis
(NCRR)
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?