KellyEdwards,Ph.D.[1]

AssociateDean,TheGraduateSchool

Professor,DepartmentofBioethicsandHumanities

UniversityofWashingtonSchoolofMedicine

Box357120 Seattle,Washington98195

Voice:206.616.7116 Fax:206.685.7515

C.V.UpdatedSeptember 2016

1.PersonalData.Placeofbirth:Honolulu,Hawaii

2.Education.

Ph.D. EducationalLeadershipandPolicyStudies-SocialFoundations

CollegeofEducation,UniversityofWashington,June2000

M.A.inMedicalEthics,UniversityofWashington,December1995

A.B.inPhilosophy,OccidentalCollege,LosAngeles,California

June1989,cumlaudehonors

YearabroadprogramatUniversityofEastAnglia,Norwich,England,1987-1988

3.PostgraduateTraining:

None.

4.FacultyPositionsHeld:

Professor, Department of Bioethics and Humanities, 2014-present

Adjunct Professor, Department of Environmental and Occupational Health Sciences, UW School of Public Health, 2014-present

AssociateProfessor,DepartmentofBioethicsandHumanities(departmentalnamechange2008),UWSchoolofMedicine,2007-2014

AdjunctAssociateProfessor,DepartmentofEnvironmentalandOccupationalHealthSciences,UWSchoolofPublicHealth,2008-present.

AffiliateFaculty,DepartmentofBiologyandWildlife,CollegeofNaturalSciencesandMathematics,UniversityofAlaska,Fairbanks,2007-2011

CoreFaculty,InstituteforPublicHealthGenetics,UniversityofWashingtonSchoolofPublicHealth,2002-present

AssistantProfessor,DepartmentofMedicalHistoryandEthics,UniversityofWashingtonSchoolofMedicine,2001-2007

ActingAssistantProfessor,DepartmentofMedicalHistoryandEthics,Universityof

WashingtonSchoolofMedicine,2000-2001

AdjunctFaculty,DepartmentofPhilosophy,SeattleUniversity,2000-2001

VisitingProfessor,FairhavenCollege,WesternWashingtonUniversity,1997-1998

5.ProfessionalOrganizations:

Member, National Postdoctoral Association, 2012-present

Member,AmericanAssociationfortheAdvancementofScience,2011-present

Member,AmericanAssociationofMedicalColleges,1996-2008

Member,AmericanSocietyforBioethicsandHumanities,1996-2012

Member,FeministApproachestoBioethics,1995-2012

Member,SocietyforGeneralInternalMedicine,2001-2004,2006-2008

Member,SocietyforTeachersofFamilyMedicine,2001-2004,2006-2008

Member,SocietyforHealthandHumanValues,1994-1997

6.TeachingResponsibilities:

NewGraduateCoursesDevelopedandTaught:

GS610b,“CreatinganIndividualDevelopmentPlanandE-Portfolio,”seminarforgraduatestudentsandpost-doctoraltrainees,Summer2013

BH497,“Inquiry-BasedScienceCommunication,”seminarforEnvironmentalHealthandPublicHealthGeneticsgraduatestudents,Spring2010

MHE597/HSERV590,“AppliedResearchEthics,”requiredethicsseminarforClinicalResearchFellows,Summer2006,Summer2007

MHE497,“Community-BasedParticipatoryResearch:AModelforGeneticsResearchwithNativeAmericanCommunities?”seminarfortheCenterforGenomicsandHealthcareEquality,Summer2006

MHE515/PHG525,“PublicCommentaryonEthicalIssuesinPublicHealthGenetics,”InstituteforPublicHealthGenetics,Spring2003-alternatingyears

PHG580,CourseDirector,“InteractiveSeminarinPublicHealthGenetics,”requiredseminarseriesforMPHinPublicHealthGenetics,Fall2003-Spring2005.

MHE506,“ProfessionalSeminarII,”requiredcourseforMABioethicsprogram,Spring2004,Spring2005

MHE536,“ResearchEthics,”requiredcourseforMABioethicsprogram,Winter2004

MHE548,“IntroductiontoClinicalEthics,”requiredcourseforMAinBioethicsprogram,Fall2002,Fall2004

MHE550,“CurrentTopicsinClinicalEthics:PolicyIssues,”requiredcourseforMAinBioethicsprogram,Spring2003,Spring2004

MHE497,“Technology,Power,andHealinginMedicine,”UniversityofWashingtonSchoolofMedicine,Winter2002

New Undergraduate and Graduate Seminars Developed by Trainees (provided Faculty Supervision)

MHE 597, “Ethics of Food,” seminar for graduate students, developed by doctoral student Kate West, Spring 2014

MHE 497, “Indigenous Research Methods,” seminar for graduate students, developed by postdoctoral fellow Michelle Montgomery, Winter 2013

MHE 497, “Ethics in Environmental Health,” seminar for undergraduate students, developed by postdoctoral fellow Wes Smith, Spring 2012

BH 554, “Ethics in the ER,” seminar for medical students, developed by medical student Thomas Robey and attending physician Stephanie Cooper, Winter 2006 (offered annually)

SOMCourses:

HUBIO548,“CasesinClinicalEthics,”requiredethicscourseforMS2students,2008-present.Courseco-chair.

HUBIO665,“IntroductiontoClinicalMedicine:Ethicsseminars,”Washington,Wyoming,Alaska,Montana,Idaho(WWAMI)sitesofUniversityofWashingtonSchoolofMedicine,2002-present. Workshoplead.

HUBIO665,“IntroductiontoClinicalMedicine,”UniversityofWashingtonSchoolofMedicine,Academicyears1999-2005.Smallgrouptutor.

HUBIO559,“Musculoskeletal,Hematology,andEthics”UniversityofWashingtonSchoolofMedicine,Winter1997,Winter1998.Smallgroupproblem-basedlearningtutor.

ResidencyEducationActivities:

FamilyMedicineResidency,“WritingandReflectionforResidents,”3-hourworkshop,PsychosocialRounds,Winters1999-2004

GeneralInternalMedicineResidents,“BurnoutinResidency: Inevitableriteofpassage?”90-minuteworkshop,BehavioralMedicineRounds,Winter/Spring2002-2010

MedicineResidents,“InformedConsent,”NoonConference,2004-2010

OphthalmologyResidents,“EthicsofPharmaceuticalReps,”Winter2001,2002

ContinuingEducationActivities:

Course Co-director, ATHENA: Academy for Teachers in Health and the Environment, UW Center for Ecogenetics and Environmental Health, Summers 2012-present

CourseCo-director,Pallitalk,Advancedcommunicationskillsforpalliativecareclinicians,Aspen,CO,October2013, September 2014

CourseConsultant,IntensiveTalk,Communicationskillsteachingforcriticalcareandpalliativecareclinicians,Pittsburgh,November2012

CourseCo-director,OncotalkTeach,Communicationskillsteachingforoncologists,Aspen,CO,2006-2011. September 2014.

CourseCo-director,AdvancedCommunicationSkills. GeorgetownUniversityHospital,WashingtonDC,October2007

CourseCo-director,Oncotalk,Advancedcommunicationskillsforoncologists,Aspen,CO,2001-2006

CourseCo-director,UnderstandingtheHumanGenome:EthicalChallengesforPublicHealthPolicy,ContinuingEducationConference,DepartmentofOccupationalandEnvironmentalHealth,UniversityofWashington,Seattle,December2003.

EducationalProgramsandCommittees:

Director, Biomedical Research Integrity Series, 2005-2008, 2014-present

Member, Provost Task Force on International Student Experience, 2014-2015

Advisor, Master’s of Public Health, Institute of Public Health Genetics, 2014-2015

Member, Provost Task Force on Online Education, 2013-2014

Co-chair, Ethics and Professionalism Working Group, UW School of Medicine Curriculum Revision Committee, 2013-2014

Chair, Interdisciplinary Teaching and Learning Committee, UW Provost Office, 2012-2013

FacultyAdvisor,CertificateforPublicScholarship,UWSimpsonCenterfortheHumanities,2012-present

Member,InterdisciplinaryStudiesCommittee,UWGraduateSchool,2012-present

Advisor,DoctoralProgramforInstituteofPublicHealthGenetics,2011-2016

Faculty Advisor, Forum on Science, Ethics, and Policy, 2008-present

Chair,InternationalResearchEthicsEducationPrograms,2007-2010

Member,CulturalCompetencyThemeCommittee,UWSchoolofMedicine,2006-2010

Chair,EthicsThemeCommittee,UWSchoolofMedicine,2005-2010

Co-ChairProfessionalismWorkingGroup,CollegesUWSchoolofMedicine,2003-2013

Member,FacultyDevelopmentWorkingGroup,UniversityofWashingtonSchoolofMedicine,CurriculumReviewCommittee,December2000-March2001

Member,ProfessionalandClinicalSkillsWorkingGroup,CurriculumReviewCommittee,UniversityofWashingtonSchoolofMedicine,January-June2000

7.EditorialResponsibilties:

Reviewer, Institute of Medicine and National Academies Reports, 2014-present

AssociateEditor,BMCMedicalResearchMethodology,2011-2012

Reviewer,Science,2010-present

Reviewer,GeneticsinMedicine,2010-2016

Reviewer,JAMA,2007-2013

Reviewer,AmericanSocietyforBioethicsandHumanitiesAnnualMeeting,2007-2013

Reviewer,MedicalEducation,2005-2013

Reviewer,AcademicMedicine,2004-2013

Reviewer,SocialScienceandMedicine,2004-2013

Reviewer,AnnalsofFamilyMedicine,2004-2013

Reviewer,SocietyofGeneralInternalMedicineAnnualMeeting,2004

AmericanSocietyforBioethicsandHumanitiesExchange,DissertationAbstractEditor,2001-2004

8.SpecialNationalandInternationalResponsibilities:

Study Section Member, Fellowships, Center for Scientific Review, July 2017, November 2017

Study Section Member, NCATS Supplement Review Committee, March 2016

Tribal Summit Planning Committee, Member, Centers of Excellence in Environmental Health, Tucson, April 2015

Rapporteur, Tribal Ecological Knowledge Summit at NIH, sponsored by NIEHS. Bethesda, December 2015

Study Section Member, NSF CCE-STEM Review Committee, March 2015

Senior Advisor, National Cancer Institute. 2014-present. Dr. Edwards serves as senior advisor to the NCI project officers developing the bioethics and ELSI research portfolio. She has co-developed and co-facilitated a national workshop on ELSI in Citizen Science and one on bioethics research in NCI funded initiatives.

Founder and Board Member, Vitaltalk, 2012-present. On senior leadership team to guide the development of communication and teaching skills programs for the medical workforce, and to cultivate a network of practitioners working toward culture change in end of life care through oncology, critical care, palliative care, geriatrics, nephrology, and others.

Council Member, Genetic Alliance, 2011-present. On senior leadership team with ongoing responsibility to restructure and lead the consumer-driven non-profit organization in response to current funding, research, and partnership priorities.

Advisor,EmergingLeadersinScienceandSociety(ELISS),AAASInitiative,2012-present.AdvisingELISSfounderandleadersinlaunchingtheirnationalleadershipfellowsinitiativeatfivemajoruniversities(includingUW),consultingonprogramplanning,fundraising,andstrategicplanning.

Member,ExternalAdvisoryBoard,CenterforExcellenceinEnvironmentalHealth,ArizonaStateUniversity,2012-present.InvitedmembertoreviewthecommunityengagementactivitieswithintheNIEHS-fundedCEEHprogramatArizonaState.

Chair, Ethics Team, Genetic Alliance Biotrust, 2012-2015. Leading an interdisciplinary team of international experts in biobanking governance to advise and direct policy and practice choices for all biobanking and research registry enterprises (national and international) within the consumer-driven non-profit, Genetic Alliance.

Chair, Ethics Advisory Team, Sage Bionetworks, 2011-2014. Leading a team of ethics and policy experts to advise this international non-profit organization on innovative technology aimed at facilitating data sharing and data contribution directly from participants. Provide guidance on IRB applications, data access policies, and consent approaches.

Co-Chair,BiobankWorkingGroup,ClinicalResearchEthicsKeyFunctionCommittee,CTSAConsortium(NCRR/NCATS),2010-2012.Directedasenioradvisoryboardof12membersfromleadinginstitutionsandcoordinatedmonthlycallsforournetworkof55membersacrosseveryCTSAwiththeaimofdevelopingandsharingbestpractices.

Member,InstituteofMedicineCommittee,ArmedForcesInstituteofPathologyRepositoryReview,2011-2012.Invitedtoreviewanddeveloprecommendationsfortheoldestandmostexpansivebiospecimenrepositoryinthenation(90millionspecimens),resultinginapublicationandbestpracticerecommendationsforarchivedlegacycollections.

Study Section Member, NIEHS grant reviews, 2009, 2014

Co-Director,UWTeam,MedicalEducationResearchConsortium,AmericanMedicalAssociation,2006.CollaboratedwithseniorleadersfromUWaspartofanationalconsortiumtodevelopinnovativeandeffectivemedicaleducationresearchapproaches.

Member,TIES(Trust,Integrity,andEthicsinScience)Consortium,2004-2010. SteeringCommitteeforNationalMeetingwithIndustryLeaders,October2005-2007.Invitedmemberofleadershipgroupfromthreeotheracademicmedicalcenters,investigatingtrustworthyresearchpracticesthroughaseriesofinvitedmeetingsandpublications.

Co-Chair,ASBHTaskForceonBioethicsandHumanitiesEducationinMedicalSchoolCurricula,2004-2008.AlongwithDr.ClarenceBraddock,ledaDelphiprocesswithmedicalschoolsacrossthecountrytoidentifyessentialelementsandteachingpracticesforethicsandhumanitieseducationinundergraduatemedicaltraining. ASBH hosts the report:

InternationalResponsibilities:

Chair,ExternalReviewCommittee,CentreforBiomedicalResearch,UniversityofVictoria,Canada.Aschair,convenedagroupofinterdisciplinaryexpertstoconductonon-sitereviewofatranslationalscienceprograminBritishColumbia.

WorkingGroupMember,“Citizen’sHealththroughpublic-privateInitiatives:Publichealth,MarketandEthicalperspectives,”EUInitiative(COST:CouncilonScienceandTechnology),2013-present.Invitedmembertodevelopanddisseminateinnovationsingovernanceandpracticesthattransformcitizenrolesinhealthandresearch(21countries).

SteeringCommitteeMember,ELSI2.0:Aninternationalcollaborative,2011-2015.Invitedmemberofinternationalleadersdesigningandpromotingatransformativeapproachtocollaborationinethical,legal,andsocialimplicationsresearchingeneticsresearchandpractice(9countriesrepresentedonleadershipgroup).

FoundingMember,MakingConnections:Biobankinggovernancepoliciesandpractices,2008-present.Invitedtointernationalthinktankonbiobankgovernance,participatinginannualmeetingsinOxford,Singapore,Montreal,Rotterdam,andsecuringfundingfor,andleadingthemeetinginBanff,2010.

9.SpecialLocalResponsibilities:

UWSchoolofMedicineActive:

Member,ContinuousProfessionalismImprovementCommittee,November2006-present

Co-Chair,DataAccessPolicyCommittee,ClinicalDataRepositoryOversightCommittee,UWMedicine,2010-2013

BiomedicalResearchIntegritySeriesAdvisoryCommittee

April2002-2004,2009-2013. Director, 2014-present

Ethicist-in-Residence, Obstetrics Pharmacology Research Unit, UW Medicine 2007-present

UWSchoolofMedicineClosed:

Co-Chair, Ethics and Professionalism Working Group, Curriculum Renewal; Member, Steering Committee, 2012-2013

Chair,DataSafetyMonitoringBoard,BalancingHopeandTruth-tellingforPatientswithCancerorCOPD. J.RandallCurtis,PI. R01fundedthroughNINR.

Member,StudentProgressCommittee,UniversityofWashingtonSchoolofMedicine

September2002-2011

Member,GraduateEducationandResearchCommittee,2007-2010

Member,StandingCommitteeonIssuesofWomenFaculty,September2003-2010

Member,UWTaskForceonPhysicianEthicsandIntegrityintheWorkplace,October2005-2006

ClinicalEthicsEducationAdvisoryCommittee,DepartmentofMedicalHistoryandEthics,December2000-2005

Member,CommitteeonInterprofessionalEthics,UniversityofWashington

September2002-2004

University-wide:

Associate Dean, University of Washington Graduate School, October 2013-present

Member, Advisory Committee on Postdoctoral Appointments, 2015

Faculty Senate Executive Committee, 2015-2016

Member, Law School Dean Review Committee, 2014-2015

Faculty Senator, UW Faculty Senate, 2014-present

Member, Title IX Task Force, Provost’s Office, 2012-present

ActingAssociateDean,UniversityofWashingtonGraduateSchool,2012-2013

ConciliationOfficer,OmbudsmanOffice,UniversityofWashington,2010-present

Director,CommunityOutreachandEthicsCore,CenterforEcogeneticsandEnvironmentalHealth,UniversityofWashingtonSchoolofPublicHealth,2006-present

Co-director,ScienceStudiesNetwork,SimpsonCenterfortheHumanities,2007-2009,SteeringCommittee,2012-present

Co-director,CriticalMedicalHumanities:Cross-disciplinaryResearchCluster,SimpsonCenterfortheHumanities,July2004-2009

Member,President’sAdvisoryCommitteeonWomen,October2003-2005

ELSICoreMember,CenterforEcogeneticsandEnvironmentalHealth,April2002-2006

PugetSoundRegion:

Advisor, Symposium on Our Youngest Citizens, Tacoma Children’s Museum and UW Tacoma, September 2014 and September 2015

BoardMember,Co-ChairProgramCommittee,NorthwestAssociationforBiomedicalResearch(NWABR),2006-2014

Affiliate,AllianceforReducingCancerNorthwest,April2004-2008

Advisor,ConsumerHealthInformationAdvisoryGroup,NationalNetworkofLibrariesofMedicine,PacificNorthwestRegion,December2002-2005

Member,WashingtonStateGeneticAdvisoryCommittee

August2002-2008

DSMBMember,PhaseIIrandomizeddouble-blindplacebo-controlleddose-escalationstudyontheeffectsofgarliconhyperlipidemiainducedbyHAARTinHIV-positiveindividuals,LeannaJ.StandishND,Ph.D.PrimaryInvestigator,BastyrUniversity,2001-2003

10.AwardsandHonors

Future-ish, 2013, 2014, 2015, 2016 Stylish Scientist

Vitaltalk Founders nominated for AAHPM/PDIA Palliative Medicine National Leadership Award, 2016

Nominated for the UW David B. Thorud Leadership Award, 2015

SustainablePath,TrailblazerAward,2013

WashingtonStateLASERScienceChampionAward,2012

GeneticAllianceInnovatorAward,2011

UWMedicineProfessionalServiceAward,2009

UW College of Education Graduate Student Leadership Award, 2000

11.ResearchFunding:

ACTIVE

2 P30 ES07033 (Eaton,PI)4/01/11-3/31/17 10%

Source: NIH/NIEHS$120,000 (AnnualCoredirect)

CenterforEcogeneticsandEnvironmentalHealth

CommunityEngagementandEthicsCore:Themajorgoalofthiscoreistoexploreandprovideeducation/outreachregardinggene-environmentresearchandcommunityengagedresearchsupportforenvironmentalhealthresearchprojectsattheCenter.Dr.EdwardsisCoreDirector.

CONCLUDED

Source: Greenwall Foundation (Seifer, PI)9/1/14-8/31/15 10%
Campus Community Partnerships for Health$100,000
Ethical Principles and Practices in Community Based Research Review
Dr. Edwards is co-investigator on this project which is using a community informed approach to update the Belmont Report and Federal Regulations guiding ethical conduct of research.
UL1 RR 025014-01 (Disis, PI)6/1/12-5/31/16 5-10%
Source: NCRR$6,513,229 (Yr 1 Direct cost)
Institute for Translational Health Sciences (ITHS, a CTSA)
Dr. Edwards was co-director of the Regulatory Support and Bioethics Core and provided leadership on ethics education within the ITHS and the CTSA consortium nationally. She led the Stakeholder Integration Impact Project in 2014. Dr. Edwards effort concluded in December 2014.
Wylie Burke, PI 5/1/2011-4/30/2016 5-20%
Source: NHGRI Total Costs: 881,172 (direct)
Center for Genomics and Healthcare Equality: Center for Excellence in ELSI Research
Dr. Edwards served as a co-investigator on the project and founded the Ethics of Partnership Core. Dr. Edwards effort concluded in June 2014.
Source: ONC (Reiter) 4/1/11- 3/31/14 5-10%
Health Share Montana: State-wide community data repository $1,750,000 (direct)
The goal of this project was to develop a state-wide research portal for comparative effectiveness community based research, in collaboration with the HealthShare Montana Health Information Exchange. Dr. Edwards was a co-investigator with the UW team and provides ethics consultation.
Source: LifeSciencesDiscoveryFund(Porter)4/1/2011–3/31/20135%
ConsortiumBiospecimenProgram$4,995,711(TotalAward)
TheaimofthisprogramwastodevelopacomprehensivebiologicalspecimencollectionanddistributionsystemtofacilitatecancerresearchacrossWashingtonwiththegoalofmoreeffectivecancertherapiesandimprovedtestsforearlydiagnosisandpredictionoftreatmentresponses.Role:ChairoftheEthicsAdvisoryGroup.
Boyer/Burke(DualPIs)12/01/2010–11/30/2013 10%
Source: NHGRI$500,000(AnnualDirect)
Ethicsofdissemination:Communicatingwithparticipantsaboutgeneticresearch
Theproposedprojectsoughttoanswerthequestionofhowwecommunicategeneticandgenomicresearchresultsinthesettingofanon-goingstudybasedonapartnershipbetweentheCenterforAlaskaNativeHealthResearch(CANHR)attheUniversityofAlaska,FairbanksandtheYukon-KuskokwimHealthCorporation(YKHC).Role:Co-Investigator,throughJune2012.
AnthonyBack,PI7/1/2006-6/30/2011 15%
Source:NCITotalCosts:$1,495,000
TrainingOncologyFacultytoTeachCommunicationSkills
TheOncoTalkFacultyDevelopmentprojecttrainedfacultytoteachcommunicationskillstoMedicalOncologyFellowsininpatientandoutpatientsettings. Role:co-investigator.
R25TW007075-01(Kuszler)9/12/07–6/30/11 10%
NIH$193,643(direct)
InternationalBiomedicalResearchEthicsFellowship
ThistraininggrantwasforfellowsfromIndonesiatoparticipateinaformaleducationalcurriculumcomposedoffoundationalcorecoursesfocusedonbiomedicalresearchethicscomplementedbyrelatedelectivecourses. Dr. Edwards was on the curriculum committee and part of the senior advisory board comprised of Indonesian physicians.
KellyEdwards,PI 7/01/05-6/30/09 5%
Source:GreenwallFoundation AnnualCosts:$25,000
TestingJustice:FramingtheNormativeIssuesofGeneticMedicinefortheUnderserved
Inthisproject,we developed a conceptual model of “responsive justice” while workingwiththeNHGRI-fundedCEERinvestigatorstoidentifycases of transformed research practices. The project resulted in an edited volume published by Oxford University Press, and a Hastings Center Report publication.

MaryHebert,PI12/1/2006-3/30/09 10%

Source:NIH/NICHDTotalCosts:

ObstetricsandPharmacologyResearchUnit

TheOPRUconductspharmacodynamicsandpharmacokineticsstudieswithpregnantwomentodeterminesafetyandefficacyofcommonlyusedmedicationsduringpregnancy. Dr.Edwardsservedasanethicsconsultantfortheproject,advisingandresearchingethicalissuesthatariserelatingtotheresearch.

KellyFryer-Edwards,PI 10/01/04-9/30/08 30%
Source:CDCSIP-04-22 TotalCosts:$530,193
FeasibilityStudyofPhysicianEducationforInformedDecisionMaking
Thiswasatwo-phaseproject,firstexploringeducationalneedsandpotentialbarriersforphysicianshavinginformeddecisionmakingdiscussionswithpatientsaroundprostatecancerscreeningdecisions. Thesecondphasedesignedandimplementedaneducationalinterventionofcommunicationskills.
AnthonyBack,PI / 9/1/01-8/31/06 / 7%
Source:CA92055(NCI) / TotalCosts:$1,354,691
EndoflifeCommunicationSkillsforMedicalOncologyFellows
Thisprojectdevelopedastructuredtrainingprograminend-of-lifecommunicationskillsformedicaloncologyfellows;implemented8four-daycourseswithfollow-updistancementorship,andevaluatetheimpactoftheprogramonlearnerknowledge,skillsandattitudes. Dr.Edwardsservedasco-investigatorfortheproject with a focus on program and faculty development.
RickDeyo,PI 9/30/04-9/29/07 5%
Source:RFA-RM-04-006 TotalCosts:$
MultidisciplinaryClinicalResearchTraining
Thistraininggrantpreparedclinicalfacultyforaresearchcareer. Dr.Edwardsdevelopedanddeliveredtheresearchethicsandintegrityeducationforthefellowsinthistrainingprogram.
JudithPauwels,PI 7/1/03-6/30/06 5%
Source:HRSABHP2-D22-HP-00008 TotalCosts:$329,534
ResidencyTrainingInPrimaryCareDentistry
Thisgrantfocusedonthreeareaswherethereisaconvergenceofpublicneedandmedicalchange:genetics,oralhealth,andgeriatrics. Dr.Edwardsconsultedonthecurriculumdevelopmentandparticipatedinfacultydevelopmentimplantation.
WylieBurke,PI / 10/1/02-5/31/06 / 5-35%
Source:240-MCHB-20(1) / TotalCosts:$500,000
GeneticsThroughaPrimaryCareLens:GeneticsTools
Themajorgoalsofthisprojectinvolvedthedesign,implementation,andevaluationofabasicgeneticscurriculumforprimarycarefaculty.Dr.Edwardsservedasco-director focusing on curriculum development and workshop facilitation.
EileenVanSchaik,PI / 09/01/03–02/28/06 / Consultant
Source:1RA43NR008839-01A2 / TotalCosts:$99,997
CulturalSensitivityinEnd-of-LifeCare
Dr.Fryer-Edwardsservedasconsultantoncontentandevaluationforthisinnovativeweb-basedcurriculum.
KellyFryer-Edwards,Co-PI(Burke)
Source:NINDS/NIHRO1NS44486-01 / 2/15/03-12/31/04
(no-costextension12/31/05) / 25%
MotivatingIntegrityonResearchwithHumanSubjects / TotalCosts:$303,200
Thisprojectassessedthepresenceandimportanceofbarrierstoethicalconductonresearchthroughinformationgatheredininterviewsandfocusgroupswithresearchersandotherkeyinformants. Dr.Edwardsservedasco-PIontheproject.
KellyFryer-Edwards,PI
Source:GreenwallFoundation / 5/1/03-4/30/04
TotalCosts:$20,222 / 8%
CommunicatingaboutEthicalIssuesattheEnd-of-Life:AGuideforClinician-Educators
Thisprojectidentifiedteachingskillsforclinician-educatorsteachingcommunicationaroundethicalissuesattheend-of-life. The free online teaching resource (“ToughTalk”) continues today.
1R01HS13172-01(Robins,L.) / 8/1/02-3/31/04 / 20%
AgencyforHealthcareandQuality / TotalCosts:$1million
TheEffectsofEstablishingFocusonMedicalEncounters
Thisprojectproposedaninterventiontoteachresidentsandattendingsthepatient-centeredinterviewingapproachofEstablishingFocus. Variouspatient,visit,andclinicianoutcomeswereassessed. Dr.Edwardsservedasco-investigatorontheproject.
240-98-0020(Kahn,N) / 10/1/01-9/30/02 / 10%
HealthResourcesandServicesAdministration / TotalCosts:1.5million
GeneticsinPrimaryCare:AFacultyDevelopmentInitiative
Themajorgoalsofthisprojectinvolvethedesignandimplementationoffacultydevelopmentprogramstoprepareprimarycarefacultytoteachstudentsandresidentsaboutgeneticissuesrelevanttoprimarycarepractice.Dr.Fryer-EdwardsservedastheCurriculumSpecialist.
WylieBurke,PI / 5/1/01-3/31/02 / 15%
Source:CDCContractNo:01IPA24505 / TotalContract:$50K
HereditaryHemochromatosisWebsite
Themajorgoalsofthisprojectaretodevelop,implement,andevaluateaninformationwebsiteforphysician-users. Dr.EdwardsservedasProjectCoordinatorfortheproject.
CHBraddock,PI
Source:RobertWoodJohnsonFoundation / 7/1/97-4/30/01
TotalCosts:$400,000 / 25-50%
ProfessionalismandMedicalEthics:AnIntegratedCurriculum
Themajorgoalsofthisprojectweretodevelop,implement,andevaluateanintegratedcurriculumforprofessionalismandmedicalethicsthroughoutthefouryearsofmedicalschool. Dr.Edwardsservedasprojectcoordinator.

12.Bibliography:

a.ManuscriptsinRefereedJournals:

  1. Back A, Sayfan R, Edwards K. Whatresidents learn from inpatient hematology/oncology: A call to rebuild a community of practice. Journal of Oncology Practice.2015 Jul;11(4):296-7. Epub 2015 Jun 16. PMID: 26080830
  1. Back A, Trinidad S, Hopley E, Edwards KA. Reframing the goals of care conversation: “We’re in a different place”. J Pall Care. 2014 Sep;17(9):1019-24. Epub 2014 Jun 16. PMID: 24932593
  1. Chalmers D, Burgess M, Edwards K, Kaye J, Meslin E. Marking Shifts in Human Research Ethics in the Development of Biobanking. Public Health Ethics.
  1. Vickers AJ, Edwards K, Cooperberg MR, Mushlin AI.. A simple schema for informed decision-making about prostate cancer screening. Annals of Internal Medicine. 2014 Sep 16;161(6):441-2. PMID: 25222389
  1. Anderson NR, Morrison C, Baldwin L, Griffin J, Reiter W, Edwards K. Governance Strategies for Conducting Text Messaging Interventions in Clinical Research. Clinical and Translational Science. 2014 Apr;7(2):127-31. PMID: 24774328
  1. Robey TE, Edwards K, Murphy MK. Patient and physician perspectives on radiation risk from CT scans in the emergency department. Academic Emergency Medicine. 2014 Feb;21(2):122-9. PMID: 24673667
  1. TerrySF,SheltonR,BiggersG,BakerD,EdwardsK.TheHaystackisMadeofNeedles.GeneticTestingandMolecularBiomarkers.2013;17(3).
  1. YarboroughM,EdwardsK,EsperanzaP,GellerG,SarwalA,SharpR,SpicerP.Relationshipsholdthekeytotrustworthyandproductivetranslationalscience:Recommendationsforexpandingcommunityengagementinbiomedicalresearch.ClinicalandTranslationalScience.2013:doi:10.1111/cts.12022.
  1. KelleyM,EdwardsK,StarksH,FullertonSM,JamesR,GoeringS,HollandS,DisisM,BurkeW.ValuesinTranslation:HowAskingtheRightQuestionsCanMoveTranslationalScienceTowardGreaterHealthImpact.ClinicalandTranslationalScience.2012;5:445–451.(PMC3561695)
  1. MelvinA,MaloneJ,WilfondB,EdwardsK.RoleforCTSAsinleveragingadistributedresearchinfrastructuretoengagediversestakeholdersinemergentresearchpolicydevelopment.ClinicalandTranslationalScience.Feb2013;6(1):57-9.
  1. AndersonN,BraggC,HartzlerA,EdwardsK. Participant-CentricInitiatives:ToolstoFacilitateEngagementInResearch.AppliedandTranslationalGenomics.1(1);December2012:25–29.
  1. KayeJ,MeslinEM,KnoppersBM,JuengstET,DeschênesM,Cambon-ThomsenA,ChalmersD,DeVriesJ,EdwardsK,HoppeN,KentA,AdebamowoC,MarshallP,KatoK.Researchpriorities.ELSI2.0forgenomicsandsociety.Science.2012May11;336(6082):673-4.
  1. KayeJ,CurrenL,AndersonN,EdwardsK,FullertonSM,KanellopoulouN,LundD,MacarthurDG,MascalzoniD,ShepherdJ,TaylorPL,TerrySF,WinterSF.Frompatientstopartners:participant-centricinitiativesinbiomedicalresearch.NatRevGenet.2012Apr3.
  1. DoukasDJ,McCulloughLB,WearS,BraddockC,BrodyH,CarreseJ,EdwardsK,FinsJJ,FreerJ,GreenM,KatzJ,LedererS,MalekJ,ShapiroJ,WatsonK.Medicaleducationinmedicalethicsandhumanitiesasthefoundationfordevelopingmedicalprofessionalism.AcademicMedicine.March2012.87(3):334-41.
  1. HornEJ,EdwardsK,TerrySF.EngagingResearchParticipantsandBuildingTrust.GeneticTestingandBiomarkersDecember2011;15(12):839-840.
  1. O’DohertyK,BurgessM,EdwardsK,GallagherR,HawkinsA,KayeJ,McAffreyV,WinickoffD.FromConsenttoInstitutions:DesigningAdaptiveGovernanceforGenomicBiobanks.SocSciMed2011.73:367-374.
  1. RobinsL,WittebornS,MinerL,MaukschL,EdwardsKA,BrockD.Identifyingtransparencyinphysiciancommunication.PatientEducCouns2011Apr;83(1):73-9.
  1. BackA.TrinidadSB,HopleyE,ArnoldR,BaileW,EdwardsKA.WhatPatientsValueWhenOncologistsGiveNewsofCancerRecurrence:CommentaryonSpecificMomentsinAudiorecordedConversations.Oncologist.2011;16(3):342-50.(PMC3228111)
  1. AndersonNRandEdwardsK*.BuildingaChainofTrust:UsingPolicyandPracticetoEnhanceTrustworthyClinicalDataDiscoveryandSharing.ACMProceedings.December2010. Accessedat:
  1. GasterB,EdwardsK,TrinidadSB,GallagherTH,BraddockCH.Patient-centereddiscussionsaboutprostatecancerscreening: Areal-worldapproach.AnnInternMed.2010Nov16;153(10):661-5.(PMC3065982)
  1. MeachamMC,StarksH,BurkeW,EdwardsK.Researcherperspectivesondisclosureofincidentalfindingsingeneticresearch.JEmpirResHumResEthics.2010Sep;5(3):31-41.(PMC3413406)
  1. BackAL,ArnoldRM,BaileW,EdwardsK,TulskyJ. WhenPraiseisWorthConsideringinDifficultConversations.Lancet.11Sept2010.376(9744):866–867.
  1. BackAL,ArnoldRM,TulskyJA,BaileWF,EdwardsK."CouldIaddsomething?":Teachingcommunicationbyinterveninginrealtimeduringaclinicalencounter.AcadMed.2010Jun;85(6):1048-51.(PMC3097516)
  1. VigEK,StarksH,TaylorJS,HopleyEK,Fryer-EdwardsK.WhyDon'tPatientsEnrollinHospice?CanWeDoAnythingAboutIt?JGenInternMed.2010Jun10.
  1. BackAL,MichaelsenK,AlexanderS,HopleyE,EdwardsK,ArnoldRM.Howoncologyfellowsdiscusstransitionsingoalsofcare:asnapshotofapproachesusedpriortotraining.JPalliatMed.2010Apr;13(4):395-400.
  1. Fullerton,SM,Yu,JH,Crouch,J,Fryer-Edwards,K,Burke,W.Populationdescriptionanditsroleintheinterpretationofgeneticassociation.HumanGenetics.2010Feb16.
  1. Fullerton,SM,Anderson,NR,Guzauskas,G,Freeman,D,Fryer-EdwardsK.Meetingthegovernancechallengesofnextgenerationbiorepositoryresearch.ScienceTranslationalMedicine,2,15cm3,2010.
  1. BackA,ArnoldRA,BaileW,TulskyJ,Fryer-EdwardsK.HumanisminOncology:Whatmakeseducationincommunicationtransformative?JCancerEducation.2009;24(2):160-2.
  1. YarboroughM,Fryer-EdwardsK,GellerG,SharpR. TransformingtheCultureofBiomedicalResearchfromCompliancetoTrustworthiness:InsightsfromNon-MedicalSectors.AcademicMedicine.2009Apr;84(4):472-7.
  1. BackA,ArnoldRM,BaileW,TulskyJ,BarleyG,PeaR,Fryer-EdwardsK.FacultyDevelopmenttoChangetheParadigmofCommunicationSkillsTeachinginOncology. JClinicalOncology.2009Mar1;27(7):1137-41.
  1. LabergeAM,Fryer-EdwardsK,KylerP,Lloyd-PuryearMA,BurkeW.Long-termimpactofthe“GeneticsinPrimaryCare”facultydevelopmentinitiative. FamilyMedicine. FamMed.2009Apr;41(4):266-70.
  1. GoeringS,HollandS,Fryer-EdwardsK.Transforminggeneticresearchpracticeswithmarginalizedcommunities:acaseforresponsivejustice.HastingsCenterReport.2008Mar-Apr;38(2):43-53.
  1. KelleyM,Fryer-EdwardsK,FullertonSM,GallagherT,WilfondB.SharingDataandExperience:UsingtheCTSA"MoralCommunity"toImproveResearchEthicsConsultation.AmericanJournalofBioethics2008;8(3):37.
  1. TrinidadSB,Fryer-EdwardsK,CrestA,KylerP,Lloyd-PuryearMA,BurkeW.Educationalneedsingeneticmedicine:primarycareperspectives.CommunityGenetics.2008;11(3):160-5.
  1. CaulfieldT,McGuireAL,ChoM,BuchananJA,BurgessMM,DanilczykU,DiazCM,Fryer-EdwardsK,GreenSK,HodoshMA,JuengstET,KayeJ,KedesL,KnoppersBM,LemmensT,MeslinEM,MurphyJ,NussbaumRL,OtlowskiM,PullmanD,RayPN,SugarmanJ,TimmonsM. Researchethicsrecommendationsforwhole-genomeresearch:consensusstatement.PLoSBiol.2008Mar25;6(3):e73.
  1. BergC,Fryer-EdwardsK.Ethicalchallengesofdirect-to-consumergenetictesting.JournalofBusinessEthics.2008;77:17-31. OnlineAccessible,March2007.
  1. Fryer-EdwardsK,VanEatonE,GoldsteinEA,KimballHR, VeithRC,PellegriniCA,RamseyPG.OvercomingInstitutionalChallengesthroughContinuousProfessionalismImprovement.AcadMed.2007Nov;82(11):1073-8.
  1. VigEK,StarksH,TaylorJS,HopleyEK,Fryer-EdwardsK.Survivingsurrogatedecision-making:whathelpsandhamperstheexperienceofmakingmedicaldecisionsforothers.JGenInternMed.2007Sep;22(9):1274-9.
  1. BackT,ArnoldR,BaileW,Fryer-EdwardsK,AlexanderS,BarleyG,GoolyT,TulskyJ. Efficacyofcommunicationskillstrainingforgivingbadnewsanddiscussingtransitionstopalliativecare.ArchInternMed.2007Mar12;167(5):453-60.
  1. DemingD,Fryer-EdwardsK,DudzinskiD,StarksH,CulverJ,RobinsL,BurkeW.Incorporatingprinciplesandpracticalwisdominresearchethicseducation.AcadMed.2007Jan;82(1):18-23.
  1. Fryer-EdwardsK,FullertonSM.Relationshipswithtest-tubes:where'sthereciprocity? AmJBioeth.2006Nov-Dec;6(6):36-8.
  1. BowenDJ,AllenJD,VuT,JohnsonRE,Fryer-EdwardsK,HartAJr.Theoreticalfoundationsforinterventionsdesignedtopromoteinformeddecisionmakingforcancerscreening.AnnBehavMed.2006Dec;32(3):202-10.
  1. VigEK,StarksH,TaylorJS,HopleyEK,Fryer-EdwardsK.Beyondsubstitutedjudgment:howsurrogatesnavigateend-of-lifedecision-making.JAmGeriatricSociety.2006;54:1688-1693.
  1. GoldsteinEA,MaestasRR,Fryer-EdwardsK,WenrichMD,OelschlagerA-M,BaernsteinA,KimballHR. Professionalisminmedicaleducation:aninstitutionalchallenge. AcademicMedicine. 2006;81:871-6.
  1. Fryer-EdwardsK,ArnoldRA,BaileW,TulskyJA,PetraccaF,BackA.Teachingcommunicationskills: aqualitativestudyofreflectiveteachingpractices.AcademicMedicine.2006;81:638-644.
  1. Fryer-EdwardsK,WilkinsMD,BaernsteinA,BraddockCH.Counteractingethicalerosionwithwardethics.AcademicMedicine.2006;81:626-631.
  1. VigEK,StarksH,TaylorJS,HopleyEK,Fryer-EdwardsK,PearlmanRA.Howdosurrogatedecisionmakersdescribehospice?Doesitmatter? AmericanJournalofHospiceandPalliativeCare.2006Mar-Apr;23:91-9.
  1. Fryer-EdwardsK.Oncasserolesandcattle.AmericanJournalofBioethics.2006;6(2):55-6.
  1. Fryer-EdwardsK,CalogeroC.Thechallengeoftheother.AmericanJournalofBioethics.2005Nov/Dec:65-66.
  1. BackT,ArnoldR,TulskyJ,BaileW,Fryer-EdwardsK.Approachingdifficultcommunicationtasksinoncology.CA–ACancerJournal.2005;55(3):164-77.
  1. BackT,ArnoldR,TulskyJ,BaileW,Fryer-EdwardsK.Onsayinggoodbye.AnnalsofInternalMedicine.2005Apr19;142(8):682-5.
  1. PinskyL,Fryer-EdwardsK..DivingforPERLS:Workingandperformanceportfoliosforevaluationandreflectiononlearning.JournalofGeneralInternalMedicine.2004;19:582-7.
  1. Fryer-EdwardsK,BaernsteinA.WhereTheRubberMeetsTheRoad:ACyclist’sGuidetoTeachingProfessionalism.AmericanJournalofBioethics.2004;4(2):22-24.
  1. SmithS,Fryer-EdwardsK,DiekemaDS,BraddockCH.Findingeffectivestrategiesofteachingethics:acomparisontrialoftwointerventions.AcademicMedicine.2004;79:265-271.
  1. BaernsteinA,Fryer-EdwardsK.PromotingReflectiononProfessionalism: AComparisonTrialofEducationalInterventionsforMedicalStudents.AcademicMedicine.2003;78(7):742-7.
  1. KasmanDL,Fryer-EdwardsK,BraddockCH.Educatingforprofessionalism:emotionalexperiencesonmedicalandpediatricwards.AcademicMedicine.2003;78(7):730-741.
  1. BackT,ArnoldR,TulskyJ,BaileW,Fryer-EdwardsK.Teachingcommunicationskillstomedicaloncologyfellows. JournalofClinicalOncology.2003;21(12):2433-6.
  1. NeherJ,Fryer-EdwardsK.Residencyashero’squest.FamilyMedicine.2003;35:367-369.
  1. BraddockCH,MicekMA,Fryer-EdwardsK,LevinsonW.Factorsthatpredictbetterinformedconsent.JournalofClinicalEthics.2002;13(4):344-52.
  1. Fryer-Edwards,K.Addressingthehiddencurriculuminscientificresearch.AmericanJournalofBioethics.2002;2(4):58-9.
  1. RobinsLS,BraddockCH,Fryer-EdwardsK.UsingtheAmericanBoardofInternalMedicine’s“ElementsofProfessionalism”asaframeworkforethicseducationandevaluation. AcademicMedicine. 2002;77:523-31.
  1. CleverS,EdwardsKA,FeudtnerC,BraddockCH.Ethicsandcommunication:Doesstudents’comfortaddressingethicalissuesvarybyspecialtyteam?JournalofGeneralInternalMedicine2001;16:560-566.
  1. EdwardsKA.Whocaresaboutempathy?(ResponsewithMarkF.Carr).SecondOpinion.2001;7(July):73-82.
  1. EdwardsKA.Acritiqueofempathy.SecondOpinion.2000;6(4):35-47.
  1. BraddockCH,EdwardsKA,HasenbergNM,LaidleyT,LevinsonW.Informeddecisionmakinginoutpatientpractice:Timetogetbacktothebasics.JAMA.1999;282:2313-2320.

b.Bookchapters:

  1. EdwardsK.“Whatdoesthecultureofresearchteachnext-generationscientists?” InFredHaffertyandJosephO’Donnell,eds.TheHiddenCurriculumandHealthProfessionsEducation.DartmouthCollegePress,2015.
  1. FullertonSMandEdwardsK,“Ethicalissuesingeneticepidemiology,”inAustinetal.GeneticEpidemiology:MethodsandApplications.CABIPress,2013.
  1. Austin MA, Beaty TH, Dotson WD, Edwards K, Fullerton SM, Gwinn M, Khoury MJ, McKnight B, Ottman R, Psaty BM, Schwartz SM, Stamatoyannopoulos J, Stanford JL, Thornton TA. Genetic Epidemiology: Methods and Applications. CABI, Wallingford, United Kingdom, 2013.
  1. GoeringS,HollandS,EdwardsK.“Makinggoodonthepromiseofgenomics:Justiceintranslationalscience,”InWylieBurke,EdwardsK,GoeringS,HollandS,TrinidadS.,eds.AchievingJusticeinGenomicTranslation:Re-ThinkingthePathwaytoBenefit.OxfordUniversityPress,2011.
  1. GoeringS,HollandS,EdwardsK.Commentariesonthediscoveryphaseoftranslationalscience,andthedevelopmentphase,deliveryphase,outcomephase,inBurkeetal.AchievingJusticeinGenomicTranslation.
  1. EdwardsK,GoeringS,HollandS,KelleyM.“Conclusion,”inBurkeetal.AchievingJusticeinGenomicTranslation.
  1. Fryer-EdwardsK,HampsonLA,CarlstenC,BurkeW."Ethicalissuesinecogenetics,"inDavidEatonandLucioCosta,eds.FundamentalsofEcogenetics.WileyBooks,2006.
  1. Fryer-EdwardsK,PinskyLE,RobinsL.“Theuseofportfolioassessmentinprofessionalism,”inDavidStern,ed.MeasuringMedicalProfessionalism.NewYork:OxfordUniversityPress,2006.
  1. BraddockCH,Fryer-EdwardsK.EthicsinMedicine.InDPauuw,LBurkholder,andMMigeon,eds.InternalMedicineClerkshipGuide,2ndedition.Mosby,2003.
  1. BraddockCH,EdwardsKA.EthicsinMedicine.InDPauuw,LBurkholder,andMMigeon,eds.GuidetoInternalMedicine.Mosby,1999.

c.Publishedbooks,videos,websites,software,etc.

  1. Castro-Reyes P, Cooks J, Drew E, Edwards K, Freeman E, Isaacs ML, Park A, Sablan-Santos L, Seifer S, Shore N, Wat E. Research ethics reconsidered in the context of community-engaged research. Final report from a Campus-Community Partnerships for Health and Greenwall Foundation project, 2015. Accessible at:
  1. CommitteeontheReviewoftheAppropriateUseofAFIP’sTissueRepositoryFollowingItsTransfertotheJointPathologyCenter(EdwardsK,committeememberandcontributingauthor).FutureUsesoftheDepartmentofDefenseJointPathologyCenterBiorepository.NationalAcademiesPress,2012.
  1. AndersonN,EdwardsK.PeopleMatter:TheFutureofResearch.Peoplematterproject.org
  1. BurkeW,EdwardsK,GoeringS,HollandS,TrinidadS.Eds.AchievingJusticeinGenomicTranslation:Re-ThinkingthePathwaytoBenefit.OxfordUniversityPress,2011.
  1. Fryer-Edwards K, Braddock C, Moskop J, Timberlake D et al. for the ASBH Task Force on Bioethics and Humanities Education in Undergraduate Medical Education, 2009.
  1. Fryer-EdwardsK,BackT,ArnoldRM,BaileW,TulskyJ.“ToughTalk:HelpingDoctorsApproachDifficultConversations,”aweb-basedresourceforclinicalfacultyandphysicians.
  1. EdwardsKA.1998-1999.Updated2003,2005, 2015.Editorfor“EthicsinMedicine,”aweb-basedresourceformedicalstudents,residents,andfaculty.

d.Otherpublications:

  1. EdwardsKA,RobeyT.PreparingfortheUnexpected-TeachingEREthics.VirtualMentor.2010;12(6):455-458.
  1. VigE,HopleyE,TaylorJ,Fryer-EdwardsK,StarksH.Cognitivescreeningraisesfearsofidentitytheft.Lettertotheeditor.JournalofAmericanGeriatricsSociety.2004;52(12):2147-8.2.BraddockCH,EdwardsKA.Howshouldphysiciansinvolvepatientsinmedicaldecisions?Lettertotheeditor.JAMA2000.283(18):2391.

3.EdwardsKA.ReviewofMedicalHarm:Historical,Conceptual,andEthicalDimensionsofIatrogenicIllness,byVASharpeandAIFaden.FeministApproachestoBioethicsNewsletter.2000;8(2):16.