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Genetics/Genomics Nursing Genetics/Genomics Nursing Competency: Competency: ImplicationsImplications for for

Education, Practice and ResearchEducation, Practice and Research

Kathleen Calzone, MSN, RN, APNG, FAANKathleen Calzone, MSN, RN, APNG, FAANNational Cancer Institute, NIHNational Cancer Institute, NIH

andand

Jean Jenkins, PhD, RN, FAANJean Jenkins, PhD, RN, FAANNational Human Genome Research Institute, NIHNational Human Genome Research Institute, NIH

Genetics Curriculum ChecklistGenetics Curriculum Checklist

Determine existing genetics/genomics contentDetermine existing genetics/genomics contentSurvey and/or visit with faculty-course contentSurvey and/or visit with faculty-course contentDetermine and/or assist faculty to determine gaps Determine and/or assist faculty to determine gaps

in pre-requisite coursesin pre-requisite coursesDetermine and/or assist faculty to determine gaps Determine and/or assist faculty to determine gaps

in nursing coursesin nursing coursesExemplar: Read, C. et al. (2004). J of Nsg Ed, Exemplar: Read, C. et al. (2004). J of Nsg Ed,

43(8), 376-380.43(8), 376-380.

Hetterberg, C., Prows, C. (2004). A checklist to assist in the integration of genetics into nursing curricula.Hetterberg, C., Prows, C. (2004). A checklist to assist in the integration of genetics into nursing curricula.Nursing Outlook. 52, 85-88. Nursing Outlook. 52, 85-88.

Models Of Genetic/Genomic Models Of Genetic/Genomic Curriculum IntegrationCurriculum Integration

• Five year plan at Boston College School of Five year plan at Boston College School of Nursing - interest group 2001Nursing - interest group 2001

• 2003 & 2008 conducted a curriculum survey 2003 & 2008 conducted a curriculum survey of lead course faculty for 20 required coursesof lead course faculty for 20 required courses

to determine genetics contentto determine genetics content

• Framework of competencies (Framework of competencies (http://www.nchpeg.org))

Boston Survey ResultsBoston Survey Results

• 100% response rate100% response rate• Genetics is integrated into the nursing Genetics is integrated into the nursing

curriculumcurriculum• Most (>50%): terminology, genetic variation Most (>50%): terminology, genetic variation

and clinical care, family history, privacy, and clinical care, family history, privacy, autonomy, and cultural identityautonomy, and cultural identity

• Least (<20%): indications for referral, misuses Least (<20%): indications for referral, misuses of genetic information, dissemination of of genetic information, dissemination of information about policy issuesinformation about policy issues

Follow-up To Survey Follow-up To Survey RecommendationsRecommendations

• Personal knowledge base developmentPersonal knowledge base development

• Incorporate principles whenever possibleIncorporate principles whenever possible

• Select texts with genetics contentSelect texts with genetics content

• Use internet and local genetics resourcesUse internet and local genetics resources

• Select clinical experiences that demonstrate Select clinical experiences that demonstrate genetics concernsgenetics concerns

OutcomesOutcomes

• Mandates: Essentials; NCLEXMandates: Essentials; NCLEX

• Recognition that everyone does not have to be Recognition that everyone does not have to be a genetics expert to include content in a genetics expert to include content in curriculum (i.e., molecular genetics)curriculum (i.e., molecular genetics)

• Providing a separate genetics course was first Providing a separate genetics course was first idea/rejectedidea/rejected

• Incorporation became an expectation of all Incorporation became an expectation of all staff (i.e., objectives, content, assignmentsstaff (i.e., objectives, content, assignments))

SummarySummary

• Takes timeTakes time• Requires communicationRequires communication• Requires commitmentRequires commitment• Use what is out there!Use what is out there!• Remove the fear factor-none of us is truly Remove the fear factor-none of us is truly

“expert”“expert”• More confidence makes it possibleMore confidence makes it possible(Exemplar: Cathy Read)(Exemplar: Cathy Read)

Genetics Curriculum Checklist Genetics Curriculum Checklist (Hetteberg & Prows, 2004)(Hetteberg & Prows, 2004)

• Increase faculty awareness about need to include geneticsIncrease faculty awareness about need to include genetics

– Share/discuss relevant documentsShare/discuss relevant documents

• Essentials of BSN Education Essentials of BSN Education http://www.aacn.nche.edu

• ISONG/ANA Scope and Standards ISONG/ANA Scope and Standards http://www.isong.org

• Essential Nursing Competencies Essential Nursing Competencies http://www.genome.gov/17517037

– Review ways to integrate into curriculumReview ways to integrate into curriculum

– Inform of available resources Inform of available resources

– Provide exemplars of others successProvide exemplars of others success

Faculty AwarenessFaculty Awareness

• Exemplar: Johns Hopkins School of Nursing Exemplar: Johns Hopkins School of Nursing Sharon Olsen “Champion role”Sharon Olsen “Champion role”

• Shares personal expertise through-out curriculumShares personal expertise through-out curriculum– Introductory courses, Trends & Issues, Health Introductory courses, Trends & Issues, Health

assessment, Pathophys, Elective in oncologyassessment, Pathophys, Elective in oncology– Across the life span; Role of nursesAcross the life span; Role of nurses

• Provides updates to faculty colleaguesProvides updates to faculty colleagues– Bulletin boardBulletin board– Listserv materials; resources (PDF Competencies)Listserv materials; resources (PDF Competencies)

Johns Hopkins Cont.Johns Hopkins Cont.

• Example: Health assessment courseExample: Health assessment course– Lecture and lab on family history/pedigreeLecture and lab on family history/pedigree– IT resources assisted in video on how to draw IT resources assisted in video on how to draw

pedigree based on standardspedigree based on standards– Required to collect on all patients and analyze for Required to collect on all patients and analyze for

risks of disease-students as teachersrisks of disease-students as teachers– Across the lifespanAcross the lifespan– Biggest challenge: EMR with family history not in Biggest challenge: EMR with family history not in

hospital setting/DISCONNECThospital setting/DISCONNECT

Family History Resources and ToolsFamily History Resources and Tools

• American Medical Association American Medical Association www.ama-assn.org www.ama-assn.org

• Centers for Disease Control and Centers for Disease Control and Prevention National Office for Public Prevention National Office for Public Health Genomics Health Genomics www.cdc.gov/genomics www.cdc.gov/genomics

• U.S. Surgeon General’s Family U.S. Surgeon General’s Family History Initiative History Initiative www.hhs.gov/familyhistory www.hhs.gov/familyhistory

Johns Hopkins Cont.Johns Hopkins Cont.

• Genetics is a large focus of public health Genetics is a large focus of public health courses offered at JHSONcourses offered at JHSON

• Nurses take elective courses within those Nurses take elective courses within those programsprograms

• Shared courses/Shared expertiseShared courses/Shared expertise

• Scholarly project-”Genetic Boxes”Scholarly project-”Genetic Boxes”


• Increase faculty knowledge about geneticsIncrease faculty knowledge about genetics– Provide genetic informational/educational Provide genetic informational/educational

opportunities such as: opportunities such as: • Faculty development seriesFaculty development series

• Brown bag lunch discussionsBrown bag lunch discussions

• WorkshopsWorkshops

• Journal clubJournal club

• Professional organizationsProfessional organizations

• ChampionsChampions

Faculty ChampionsFaculty Champions Faculty SupportFaculty Support Share expertise through-out Share expertise through-out

curriculumcurriculum Consult with individual Consult with individual

faculty to provide assistance faculty to provide assistance in integrating genetics/ in integrating genetics/ genomics into existing genomics into existing courseworkcoursework

Serve as a faculty resourceServe as a faculty resource Link to genetic/genomic Link to genetic/genomic

expertsexperts


• Integrate genetic content in nursing curriculumIntegrate genetic content in nursing curriculum– Funding; resources: genetics professionalsFunding; resources: genetics professionals– Develop/add genetics-related objectives, content, Develop/add genetics-related objectives, content,

assignments, test questions, extra credit assignments, test questions, extra credit assignmentassignment

– Add/assist in adding content, assignments, test Add/assist in adding content, assignments, test questions to faculty courses questions to faculty courses

– Develop a new Develop a new elective elective course focused on course focused on genetics; develop a new genetics; develop a new requiredrequired course course

Stand Alone CourseStand Alone Course

• Exemplar: University of Pittsburgh Exemplar: University of Pittsburgh Yvette ConleyYvette Conley

• Full 3 credit course is required of all Full 3 credit course is required of all undergraduate nursing students (2001)undergraduate nursing students (2001)

• Introduction to genetics & molecular Introduction to genetics & molecular therapeuticstherapeutics

• Also available at graduate level/add EBPAlso available at graduate level/add EBP• www.nursing.pitt.edu doctoral program www.nursing.pitt.edu doctoral program

brochure genomicsbrochure genomics

Stand Alone CourseStand Alone Course

• Exemplar: Emory Lynette WrightExemplar: Emory Lynette Wright

• Required course for all studentsRequired course for all students– 3 hr course for senior undergrads3 hr course for senior undergrads– 2 hr course for all masters students2 hr course for all masters students– Not practical for all programsNot practical for all programs– Encourage interdisciplinary courseEncourage interdisciplinary course

Emory University Cont.Emory University Cont.

– KEY: faculty that feel committed to geneticsKEY: faculty that feel committed to genetics– Important to provide faculty updates (<fear)Important to provide faculty updates (<fear)– Include biology in early courses. Build on it for Include biology in early courses. Build on it for

clinical application “just like other nursing clinical application “just like other nursing courses”courses”

– Problem based: science; condition; impact; Problem based: science; condition; impact; ethical, legal, social implicationsethical, legal, social implications

– Take home exams with clinical scenariosTake home exams with clinical scenarios– Small group projects/poster daysSmall group projects/poster days

Genetics Curriculum at The University Genetics Curriculum at The University of Iowaof Iowa

• Exemplar: Janet WilliamsExemplar: Janet Williams

• UI uses an integrated model and human UI uses an integrated model and human genetics elective coursegenetics elective course– Content throughout coursesContent throughout courses– Online human genetics courseOnline human genetics course

• Enrollment includes UI ug students, UI grad students, Enrollment includes UI ug students, UI grad students, practicing nurses, nurse faculty from other programspracticing nurses, nurse faculty from other programs

• Taught by genetics nursing facultyTaught by genetics nursing faculty


• Example-Undergraduate content taught by Example-Undergraduate content taught by course facultycourse faculty– Issues in Nursing -Senior level course, includes Issues in Nursing -Senior level course, includes

ethics principlesethics principles– Ethical Issues CD-Rom from UIEthical Issues CD-Rom from UI

[email protected]@uiowa.edu– Case studies on genetic testing that presents ethics Case studies on genetic testing that presents ethics

issues and discussion questionsissues and discussion questions


• Example- Undergraduate content taught by Example- Undergraduate content taught by genetics nursing content expertgenetics nursing content expert– Human Growth and Development course for pre-Human Growth and Development course for pre-

nursing studentsnursing students• guest lecture on genetic influences of growth, guest lecture on genetic influences of growth,

development, and health of childrendevelopment, and health of children

• guest lecture on genetic influences of growth, guest lecture on genetic influences of growth, development, and health of adultsdevelopment, and health of adults


• BenefitsBenefits– Faculty with genetic nursing expertiseFaculty with genetic nursing expertise– Clinical colleagues from nursing, genetic Clinical colleagues from nursing, genetic

counseling, public health, medicine, with genetics counseling, public health, medicine, with genetics expertise and interest in clinical teachingexpertise and interest in clinical teaching

– Offer independent study experiences to ug students Offer independent study experiences to ug students with nursing faculty, some students include with nursing faculty, some students include clinical experiences in specialty clinicsclinical experiences in specialty clinics


• BenefitsBenefits– Dean support of importance of genetics in the Dean support of importance of genetics in the

profession of nursing to meet health care profession of nursing to meet health care challengeschallenges

– More students enter BSN program with strong More students enter BSN program with strong science preparation, are familiar with genetics science preparation, are familiar with genetics concepts “younger students get it; not intimidated”concepts “younger students get it; not intimidated”

– Student enthusiasm for genetics application in Student enthusiasm for genetics application in nursing practice “find it exciting and expect it”nursing practice “find it exciting and expect it”


• What’s challengingWhat’s challenging– Keeping up with the scope of genetics application Keeping up with the scope of genetics application

across all populations and clinical settingsacross all populations and clinical settings– Keeping up with resources to support application Keeping up with resources to support application

of genetics and genomics in nursing curriculaof genetics and genomics in nursing curricula– Changing facultyChanging faculty

Interdisciplinary Interdisciplinary Education ConsortiumEducation Consortium

Outcome Indicators

FacultyToolkit

EssentialEssentialCompetenciesCompetencies

Tool KitTool Kit 9/14/07 meeting was held in collaboration with 9/14/07 meeting was held in collaboration with

AACN. Recommendation: A Toolkit is needed.AACN. Recommendation: A Toolkit is needed. Utilize learning outcomes and practice indicators Utilize learning outcomes and practice indicators

to select what to include.to select what to include. Content must illustrate:Content must illustrate:

Relevancy for nurses;Relevancy for nurses; Identify the right skills;Identify the right skills; Be realistic in the expected outcomes;Be realistic in the expected outcomes; and offer Champions for consultationand offer Champions for consultation..

Tool KitTool Kit Consider varied methodologies to offer valuable Consider varied methodologies to offer valuable

genetic/genomic resourcesgenetic/genomic resources Second meeting held 6/24-6/25/08Second meeting held 6/24-6/25/08 Learned from experiences of others (UK)Learned from experiences of others (UK) Heard about what other disciplines offer; Heard about what other disciplines offer; Determined those components we had on our Determined those components we had on our

wish list to include:wish list to include: Clearinghouse (shopping cart)Clearinghouse (shopping cart) Interactive (wiki)Interactive (wiki) Images/slidesImages/slides SharewareShareware

Tool KitTool Kit

Identified and peer reviewed resourcesIdentified and peer reviewed resourcesMapped available resources to specific Mapped available resources to specific

knowledge areas linked to competenciesknowledge areas linked to competenciesCompleted a resource gap analysisCompleted a resource gap analysisPlan to establish an editorial board for ongoing Plan to establish an editorial board for ongoing

maintenance of toolkitmaintenance of toolkitIdentified a vendor to build the toolkitIdentified a vendor to build the toolkit

Nursing/PA/UVA CollaborationNursing/PA/UVA Collaboration

Education RepositoryEducation Repository

Faculty/Staff DevelopmentFaculty/Staff Development NCHPEG www.nchpeg.org NCHPEG www.nchpeg.org Cincinnati Children’s Hospital Web Based Genetics Cincinnati Children’s Hospital Web Based Genetics

Institute; Modules (web-based, self paced, free access Institute; Modules (web-based, self paced, free access and use); Genetics is Relevant Now (CE) and use); Genetics is Relevant Now (CE) www.gepn.cchmc.org www.gepn.cchmc.org

National Institute of Nursing Research Summer National Institute of Nursing Research Summer Genetics Institute Genetics Institute ninr.nih.gov ninr.nih.gov

International Society of Nurses in GeneticsInternational Society of Nurses in Geneticswww.isong.org www.isong.org

Oncology Nursing Society Short Course Oncology Nursing Society Short Course www.ons.org www.ons.org

Research Institution Training ProgramsResearch Institution Training ProgramsFox Chase Cancer Center; City of HopeFox Chase Cancer Center; City of Hope

ResourcesResources

• Textbooks (Jenkins & Lea, 2005; Lashley, Textbooks (Jenkins & Lea, 2005; Lashley, 2005 & 2007; Calzone, Masny, Jenkins, in 2005 & 2007; Calzone, Masny, Jenkins, in press)press)

• WeblinksWeblinks

• References:References:

– Genetics articles in Nursing journals (JNS) Genetics articles in Nursing journals (JNS) & now an e-text from STTI& now an e-text from STTI

Norton Publishers (WW Norton & Company) 2006

Clinical ResourcesClinical Resources

• Stories-UK: Stories-UK: http://www.geneticseducation.nhs.uk/ http://www.geneticseducation.nhs.uk/ tellingstories/index.asptellingstories/index.asp

• GeneTests www.genetests.org GeneTests www.genetests.org

• Genetic Alliance www.geneticalliance.orgGenetic Alliance www.geneticalliance.org

• Genetics and Rare Diseases Information Genetics and Rare Diseases Information Center (GARD) www.genome.gov/10000409Center (GARD) www.genome.gov/10000409

• NCI www.cancer.gov NCI www.cancer.gov

Genetics and Genomics for Genetics and Genomics for Health Professionals – New Health Professionals – New

NHGRI Web ResourceNHGRI Web Resource

reliable, up-to-date genetics and genomics reliable, up-to-date genetics and genomics information related to patient managementinformation related to patient management curricular resourcescurricular resources new National Institutes of Health and NHGRI new National Institutes of Health and NHGRI research activitiesresearch activities related ethical, legal and social issuesrelated ethical, legal and social issues

–http://www.genome.gov/Health/http://www.genome.gov/Health/

Consequences (Jenkins Dissertation 1999)Consequences (Jenkins Dissertation 1999)

• Predicted consequences of genetics nursing Predicted consequences of genetics nursing education n=398education n=398

• Themes: Themes: ADVANTAGESADVANTAGES

““the current paradigm of nursing will change”the current paradigm of nursing will change”

““greater access to genetic services and greater access to genetic services and information”information”

““nurses will be prepared for the incredible nurses will be prepared for the incredible changes already occurring in health care”changes already occurring in health care”

Consequences Of Genetics Nursing Consequences Of Genetics Nursing EducationEducation

CHALLENGESCHALLENGES

““a little knowledge could be dangerous”a little knowledge could be dangerous”

““to not provide this education to nurses means to not provide this education to nurses means that nurses will not be able to participate on an that nurses will not be able to participate on an interdisciplinary team that addresses genetic interdisciplinary team that addresses genetic problems/illnesses”problems/illnesses”

“…“…most resources, such as textbooks are out of most resources, such as textbooks are out of date as soon as published”date as soon as published”

Consequences Of Genetics/ Genomics Consequences Of Genetics/ Genomics Education for PracticeEducation for Practice

• KnowledgeKnowledge

• ReferralsReferrals

• InterpretInterpret

• Patient EducationPatient Education

• EthicsEthics

• PolicyPolicy

Public PerceptionPublic Perception

Main concern of consumer:Main concern of consumer: What can be done to improve the outcome of What can be done to improve the outcome of

my healthmy health??

Awareness, interest,Awareness, interest,access, outcomes,access, outcomes,decisions, cost, fears ofdecisions, cost, fears ofdiscriminationdiscrimination

What is GINA?What is GINA?

• A federal law (passed 2008) that prevents A federal law (passed 2008) that prevents health insurers and employers from health insurers and employers from discriminating based on an individual’s discriminating based on an individual’s genetic informationgenetic information

• The bill is intended to allow Americans to take The bill is intended to allow Americans to take advantage of the benefits of genetic testing advantage of the benefits of genetic testing without fear of losing their health insurance or without fear of losing their health insurance or their jobs their jobs

What will GINA do?What will GINA do?

• Prohibit health insurers from requesting or requiring Prohibit health insurers from requesting or requiring genetic information of an individual or their family genetic information of an individual or their family members, or using it for decisions regarding members, or using it for decisions regarding coverage, rates, or preexisting conditions. coverage, rates, or preexisting conditions.

• Prevents employers from using genetic information in Prevents employers from using genetic information in decisions regarding hiring, firing, promotion or any decisions regarding hiring, firing, promotion or any other terms of employment (e.g., benefits)other terms of employment (e.g., benefits)

• The law specifically includes participation in research The law specifically includes participation in research that includes genetic services (genetic testing, that includes genetic services (genetic testing, counseling, or education).counseling, or education).

GINA’s Core ProtectionsGINA’s Core Protections

• Genetic testing and genetic information that reveals Genetic testing and genetic information that reveals an increased risk of future disease, such as breast and an increased risk of future disease, such as breast and ovarian cancer, Alzheimer disease, colon cancer, ovarian cancer, Alzheimer disease, colon cancer, Huntington diseaseHuntington disease

• Family HistoryFamily History

• DNA or RNA based pharmacogenomic tests (i.e., DNA or RNA based pharmacogenomic tests (i.e., cytochrome p450 testing by DNA chip)cytochrome p450 testing by DNA chip)

GINA does NOT coverGINA does NOT cover

• Manifest disease – someone who is already Manifest disease – someone who is already sicksick

• Use of genetic information in regard to life, Use of genetic information in regard to life, long-term care, or disability insurancelong-term care, or disability insurance

• Members of the militaryMembers of the military

Now what?Now what?

• Regulations being drafted to implement GINARegulations being drafted to implement GINA12 month deadline12 month deadline

• Insurance protections go into effect May 09Insurance protections go into effect May 09

• Employment protections go into effect Employment protections go into effect November 2009November 2009

Genetics Legislation, Guidelines and Genetics Legislation, Guidelines and PoliciesPolicies

• National Human Genome Research Institute: National Human Genome Research Institute: Policy and Ethics Policy and Ethics www.genome.gov/PolicyEthics/ www.genome.gov/PolicyEthics/

• Secretary’s Advisory Committee on Genetics, Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) Health and Society (SACGHS) www4.od.nih.gov/oba/sacghs.htm www4.od.nih.gov/oba/sacghs.htm

• Thomas—U.S. Congress on the Internet Thomas—U.S. Congress on the Internet www.thomas.govwww.thomas.gov

American Academy of Nursing:American Academy of Nursing:Genetics and Genomics Nursing White PaperGenetics and Genomics Nursing White Paper

• Purpose: To educate policymakers, the media and other professional Purpose: To educate policymakers, the media and other professional health organizations about nurses’ role and impact on the emerging health organizations about nurses’ role and impact on the emerging policy area of genetics and genomics. (Publication planned for 2009)policy area of genetics and genomics. (Publication planned for 2009)

• Addresses:Addresses:– Improving health outcomes by nurses who are competent in Improving health outcomes by nurses who are competent in

genetics and genomics. Two concrete examples are included. genetics and genomics. Two concrete examples are included. – Nursings role in genetics and genomics (current and projected). Nursings role in genetics and genomics (current and projected).

– An overview and comparison of what the U.S. and other countries An overview and comparison of what the U.S. and other countries are doing in genetics and genomics. are doing in genetics and genomics.

– An international perspective and highlight relevant points that can An international perspective and highlight relevant points that can be used to inform U.S. policy issues. be used to inform U.S. policy issues.

– Identifies current and future policy issues.Identifies current and future policy issues.

PreparePrepare NURSES NOT ONLY FOR THE NURSES NOT ONLY FOR THE

NEEDS OF TODAY, BUT ALSO FOR THE NEEDS OF TODAY, BUT ALSO FOR THE UTILIZATION OF GENOMIC ADVANCES IN THE UTILIZATION OF GENOMIC ADVANCES IN THE

HEALTH CARE OF TOMORROWHEALTH CARE OF TOMORROW

Competency: ResearchCompetency: Research

• Evaluates impact and effectiveness of genetic Evaluates impact and effectiveness of genetic and genomics technology, information, and genomics technology, information, interventions, and treatments on clients’ interventions, and treatments on clients’ outcome.outcome.

• AAnalytic Validity nalytic Validity • CClinical Validity linical Validity • CClinical Utility linical Utility • EEthical, Legal and Social Implications thical, Legal and Social Implications

Quality OversightQuality Oversight• FDAFDA

– Test KitsTest Kits– Drug LabelingDrug Labeling

• EGAPPEGAPP– Coordinated, systematic process for evaluating Coordinated, systematic process for evaluating

genetic testsgenetic tests– Recommendation statementsRecommendation statements

http://www.egappreviews.org http://www.egappreviews.org – Report completed for CYP450-insufficient Report completed for CYP450-insufficient

evidence; more clinical trials neededevidence; more clinical trials needed

Additional Information & Reviewsavailable at www.egappreviews.org

Personal/Professional PerspectivePersonal/Professional Perspective

SEMINARS IN SEMINARS IN ONCOLOGY ONCOLOGY NURSING, 2006, NURSING, 2006, 22(2), 117-12522(2), 117-125

• Example Example – NHLNHL

Building BlocksBuilding Blocks

• ProgressProgress• Healthcare Healthcare

ProfessionalsProfessionals• Healthcare Healthcare

SystemsSystems• ResourcesResources• PublicPublic• YouYou

Thank youThank you

• jean.jenkins jean.jenkins @nih. gov@nih. gov

• 301-496-4601301-496-4601

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