Genetics/Genomics Nursing Competency PowerPoint II

Genetics/Genomics Nursing Competency: Genetics/Genomics Nursing Competency: Implications for Education, Practice and ResearchImplications for Education, Practice and Research

Kathleen Calzone, MSN, RN, APNG, FAANKathleen Calzone, MSN, RN, APNG, FAANNational Institutes of Health, National Institutes of Health,

National Cancer Institute, National Cancer Institute, Center for Cancer Research-Genetics BranchCenter for Cancer Research-Genetics Branch

andand

Jean Jenkins, PhD, RN, FAANJean Jenkins, PhD, RN, FAANNational Institutes of Health, National Institutes of Health,

National Human Genome Research InstituteNational Human Genome Research Institute

DefinitionsDefinitions GeneticsGenetics – study of – study of

individual genes and their individual genes and their impact on relatively rare impact on relatively rare single gene disorderssingle gene disorders

GenomicsGenomics – study of all – study of all the genes in the human the genes in the human genome together, including genome together, including their interactions with each their interactions with each other, the environment, and other, the environment, and other psychosocial and other psychosocial and cultural factorscultural factors

Overview of the SessionOverview of the Session Relevance of Genetics and Genomics to Nursing Relevance of Genetics and Genomics to Nursing

PracticePractice The Essential Nursing Competencies and The Essential Nursing Competencies and

Curricula Guidelines for Genetics and Curricula Guidelines for Genetics and GenomicsGenomics

Competency Outcome IndicatorsCompetency Outcome Indicators Genetics/Genomics and AACN Baccalaureate Genetics/Genomics and AACN Baccalaureate

EssentialsEssentials Models of Genetic and Genomic Curriculum Models of Genetic and Genomic Curriculum

Integration Resources for Nursing EducatorsIntegration Resources for Nursing Educators Implications for Nursing Research Implications for Nursing Research Discussion/Questions and AnswersDiscussion/Questions and Answers

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Cumulative Pace of Disease Gene Discovery 1981-2005Cumulative Pace of Disease Gene Discovery 1981-2005

YearYear

NumberNumberof Genesof Genes

AssociatedAssociatedwithwith

DiseaseDisease

Source: Online Mendelian Inheritance in ManSource: Online Mendelian Inheritance in Man

Nursing PopulationNursing PopulationThere are more than 2,900,000 nurses as of March 2004

2,915,309 current licenses to practice as registered nurses

2,421,351 employed in nursing 1,360,847 in a hospital setting

U.S. DHHS (2005). The Registered Nurse Population: Preliminary Findings from the National Sample U.S. DHHS (2005). The Registered Nurse Population: Preliminary Findings from the National Sample Survey Of Registered Nurses , March 2004., HRSA, Bureau of Health Professions, Division of Nursing.Survey Of Registered Nurses , March 2004., HRSA, Bureau of Health Professions, Division of Nursing.

Nursing BackgroundNursing Background Genetic and genomic content is not

consistently incorporated into 2007 NCLEX-RN® Detailed Test Plan Examination to evaluate entry-level

nursing competence of candidates for licensure as registered nurses

• Perform health history/health and risk assessments (e.g., lifestyle, family and genetic history)

A systematic evaluation of genetic/genomic content in post registered nurse NCLEX certification examinations has not been completed

National Council State Boards of Nursing. (2007). 2007 NCLEX-RN® Detailed Test Plan. National Council State Boards of Nursing. (2007). 2007 NCLEX-RN® Detailed Test Plan. https://www.ncsbn.org/2007_NCLEX_RN_Detailed_Test_Plan_Candidate.pdfhttps://www.ncsbn.org/2007_NCLEX_RN_Detailed_Test_Plan_Candidate.pdf

http://www.genome.gov/10000409

Barriers to Incorporating Genetics and Barriers to Incorporating Genetics and Genomics into Nursing CurriculaGenomics into Nursing Curricula

2005 Nursing Faculty Survey (2005 Nursing Faculty Survey (N=224))AIM: DAIM: Determine status of genetics content in nursing etermine status of genetics content in nursing curricula and compare to 1996 faculty surveycurricula and compare to 1996 faculty survey29% of schools reported no genetic or genomic 29% of schools reported no genetic or genomic curriculum content (no change from 1996)curriculum content (no change from 1996)

Barriers Curriculum too full (92%) Curriculum too full (92%) Faculty not knowledgeable about genetics (59.4%)Faculty not knowledgeable about genetics (59.4%) Not high enough priority (34.4%)Not high enough priority (34.4%) Not covered in NCLEX (24.6%)Not covered in NCLEX (24.6%) Not important for certification (10.3%)Not important for certification (10.3%) Not essential to nursing care (9.4%)Not essential to nursing care (9.4%) Not applicable or relevant to nursing practice (2.2%)Not applicable or relevant to nursing practice (2.2%)

Prows, C., Calzone, K., Jenkins, J. (2006). Genetics content in nursing curriculum. Proc. of NCHPEG.Prows, C., Calzone, K., Jenkins, J. (2006). Genetics content in nursing curriculum. Proc. of NCHPEG.

Estimated Curricular Time Spent on Estimated Curricular Time Spent on Genetic Content CategoriesGenetic Content Categories

Prows, C., Calzone, K., Jenkins, J. (2006). Genetics content in nursing curriculum. Proc. of NCHPEG.Prows, C., Calzone, K., Jenkins, J. (2006). Genetics content in nursing curriculum. Proc. of NCHPEG.

Genetics and genomics mentioned 16 times Genetics and genomics mentioned 16 times not including genetic/genomic concepts not including genetic/genomic concepts such as pedigrees and pharmacogenomics.such as pedigrees and pharmacogenomics.

Executive SummaryExecutive Summary

““This document emphasizes such concepts as patient-This document emphasizes such concepts as patient-centered care, interprofessional teams, evidence-based centered care, interprofessional teams, evidence-based practice, quality improvement, patient safety, practice, quality improvement, patient safety, informatics, clinical reasoning/critical thinking, informatics, clinical reasoning/critical thinking, genetics genetics and genomicsand genomics, cultural sensitivity, professionalism, and , cultural sensitivity, professionalism, and practice across the lifespan in an ever-changing and practice across the lifespan in an ever-changing and complex healthcare environment.”complex healthcare environment.”

IntroductionIntroduction

““Scientific advances, particularly in the areas of Scientific advances, particularly in the areas of genetics genetics and genomicsand genomics, have had and will continue to have a , have had and will continue to have a growing and significant impact on prevention, diagnosis, growing and significant impact on prevention, diagnosis, and treatment of diseases, illnesses, and conditions.”and treatment of diseases, illnesses, and conditions.”

““Strong forces influencing the role of nurses include:Strong forces influencing the role of nurses include: Scientific advances, particularly in the area of Scientific advances, particularly in the area of genetics and genomicsgenetics and genomics.”.”

The Discipline of NursingThe Discipline of Nursing

““Scientific advances, (particularly in the areas of Scientific advances, (particularly in the areas of genetics and genomics)genetics and genomics), changing demographics of , changing demographics of patient populations, new care technologies, and patient patient populations, new care technologies, and patient access to health care information call for new ways of access to health care information call for new ways of thinking and doing in health care.”thinking and doing in health care.”

Essential V: Healthcare Policy, Finance, and Essential V: Healthcare Policy, Finance, and Regulatory EnvironmentsRegulatory Environments

Sample ContentSample Content““Impact of social trends such as Impact of social trends such as genetics and genetics and genomicsgenomics, childhood obesity and aging on health , childhood obesity and aging on health policy.”policy.”

Essential VII: Clinical Prevention and Population Essential VII: Clinical Prevention and Population HealthHealth

RationaleRationale““Epidemiologic studies show that lifestyle, Epidemiologic studies show that lifestyle, environmental, and environmental, and geneticgenetic factors are major factors are major determinants of population health in areas of health, determinants of population health in areas of health, illness, disease, disability, and mortality.”illness, disease, disability, and mortality.”


The baccalaureate program prepares the graduate to:The baccalaureate program prepares the graduate to:1.1. ““Access protective and predictive factors, Access protective and predictive factors, including including

geneticsgenetics, which influence the health of individuals, , which influence the health of individuals, families, groups, communities, and populations.families, groups, communities, and populations.

2.2. Conduct a health history, including environmental Conduct a health history, including environmental exposure and exposure and a family history that recognizes genetic a family history that recognizes genetic risks,risks, to identify current and future health problems.” to identify current and future health problems.”


Sample ContentSample Content““genetics and genomicsgenetics and genomics..Pedigree from a three-generation family health Pedigree from a three-generation family health history using standardized symbols and terminologyhistory using standardized symbols and terminology..””

Essential VIII: Professionalism and Professional Essential VIII: Professionalism and Professional ValuesValues

RationaleRationale““In addition, nurses are prepared to work with patients In addition, nurses are prepared to work with patients across the lifespan who across the lifespan who require genetic technologies require genetic technologies and treatmentand treatment.”.”

Essential IX: Baccalaureate Generalist Nursing Essential IX: Baccalaureate Generalist Nursing PracticePractice

RationaleRationale““In addition, nurses are prepared to work with patients across the In addition, nurses are prepared to work with patients across the lifespan who lifespan who require genetic technologies and treatmentrequire genetic technologies and treatment.”.”““For example, For example, genetics and genomicsgenetics and genomics are areas where knowledge is are areas where knowledge is escalating and the graduate will be cognizant of customized therapies escalating and the graduate will be cognizant of customized therapies designed to improve care outcomes.”designed to improve care outcomes.”


The baccalaureate program prepares the graduate to:The baccalaureate program prepares the graduate to:““2. Recognize the relationship of 2. Recognize the relationship of genetics and genomicsgenetics and genomics to to

health, prevention, screening, diagnostics, prognostics, health, prevention, screening, diagnostics, prognostics, selection of treatment, and monitoring of treatment selection of treatment, and monitoring of treatment effectiveness, using a constructed pedigree from effectiveness, using a constructed pedigree from collected family history information as well as collected family history information as well as standardized symbols and terminology.”standardized symbols and terminology.”


Sample ContentSample Content “ “genetics and genomicsgenetics and genomics.. pharmacology/pharmacology/pharmacogeneticspharmacogenetics.”.”

SummarySummary

““Due to the ever-changing and complex healthcare Due to the ever-changing and complex healthcare environment, this document emphasizes such concepts environment, this document emphasizes such concepts as patient-centered care, interprofessional teams, as patient-centered care, interprofessional teams, evidence-based practice, quality improvement, patient evidence-based practice, quality improvement, patient safety, informatics, clinical reasoning/critical thinking, safety, informatics, clinical reasoning/critical thinking, genetics and genomicsgenetics and genomics, cultural sensitivity, , cultural sensitivity, professionalism, practice across the lifespan, and end-professionalism, practice across the lifespan, and end-of-life care.”of-life care.”

Heart Disease34%

Cancer30%

Cerebrovascular8% Chronic Lower Respiratory

7%Accidents

6%

Diabetes4%

Influenza/Pneumonia3%

Alzheimer's4%

Kidney2%

Septicemia2%

Other11%

Top Ten Leading Causes of Top Ten Leading Causes of Mortality in the USMortality in the US

National Center for Health Statistics. http://www.cdc.gov/nchs/fastats/deaths.htmNational Center for Health Statistics. http://www.cdc.gov/nchs/fastats/deaths.htm

Gene Discoveries for Common Complex Diseases

NIH Research Initiatives

Human Genome Project

Completed

Human Genome Project Begins

HapMap Project Completed

Genes and Environment Initiative Launched

Genetic Association Information Network Launched

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HapMap Project Initiated

The Cancer Genome Atlas Launched

YR 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07

Prologue by HHS Secretary Prologue by HHS Secretary Michael O. LeavittMichael O. Leavitt

Some Key Points:Some Key Points:

Developed powerfulDeveloped powerful

pharmaceuticals – yet most drugs pharmaceuticals – yet most drugs prescribed in the US today are prescribed in the US today are effective in fewer than 60% of effective in fewer than 60% of treated patients. This efficacy rate treated patients. This efficacy rate reflects the variability of reflects the variability of metabolism or other factors from metabolism or other factors from person to personperson to person.

Our definitions of diseases Our definitions of diseases remain rooted in 18th and 19th remain rooted in 18th and 19th century terms.century terms.

http://www.hhs.gov/myhealthcare/news/phc_2008_report.pdfhttp://www.hhs.gov/myhealthcare/news/phc_2008_report.pdf

Goal of Personalized MedicineGoal of Personalized Medicine Help us achieve the right diagnosis Help us achieve the right diagnosis

and prescribe the right medication for and prescribe the right medication for the particular individual and exact the particular individual and exact condition, steadily improving on condition, steadily improving on traditional trial-and-error approaches;traditional trial-and-error approaches;

Enable us to spot the onset of disease Enable us to spot the onset of disease even before symptoms appear, and even before symptoms appear, and take action to preempt or delay onset take action to preempt or delay onset of the condition; andof the condition; and

Help us identify our own Help us identify our own predisposition to disease, so that we predisposition to disease, so that we can take more effective steps to can take more effective steps to prevent it.prevent it.

http://www.fda.gov/cder/foi/label/2007/009218s105lblv2.pdfhttp://www.fda.gov/cder/foi/label/2007/009218s105lblv2.pdf

FDA CoumadinFDA Coumadin®® LabelingLabeling

Emergency Department VisitsEmergency Department VisitsCenters for Disease Control National ED Centers for Disease Control National ED Surveillance 2004-2005Surveillance 2004-2005Adverse drug events (ADE) defined as Adverse drug events (ADE) defined as undesirable pharmacologic or idiosyncratic undesirable pharmacologic or idiosyncratic effects from medications administered at effects from medications administered at correctcorrect dosages. dosages. ADE’s accounted for > 200,000 ED visitsADE’s accounted for > 200,000 ED visitsADE’s accounted for > 36,000 hospitalizationsADE’s accounted for > 36,000 hospitalizationsAmong individuals Among individuals >>65 y/o 17.3% of ED visits 65 y/o 17.3% of ED visits were associated with ADE’s from were associated with ADE’s from warfarinwarfarin..

Budnitz, D.S., et al. (2006). National surveillance of emergency department visits for outpatient adverse drug Budnitz, D.S., et al. (2006). National surveillance of emergency department visits for outpatient adverse drug events. JAMA, 296, 1858-1866.events. JAMA, 296, 1858-1866.Budnitz, D.S., et al. (2007). Medication use leading to emergency department visits for adverse drug events Budnitz, D.S., et al. (2007). Medication use leading to emergency department visits for adverse drug events in older adults. Annals of Internal Medicine, 147, 755-765.in older adults. Annals of Internal Medicine, 147, 755-765.

Environment and personal factors play a Environment and personal factors play a role in individual variationrole in individual variation

Direct to Consumer MarketingDirect to Consumer Marketing

http://www.navigenics.comhttp://www.navigenics.com/http://www.decode.com/http://www.decode.com/

Two Separate IssuesTwo Separate IssuesClaims made about the Claims made about the tests to induce purchase tests to induce purchase (e.g., through (e.g., through advertising); advertising);

Sale of genetic testing Sale of genetic testing services and provision of services and provision of test results directly to test results directly to consumersconsumers

http://www.navigenics.com/

Direct to Consumer MarketingDirect to Consumer Marketing23andMe23andMe 23andme launched directly to consumers in December 2007. 23andme launched directly to consumers in December 2007. Saliva Sample.Saliva Sample. Evaluating nearly 600,00 SNP’s for 90 health conditions Evaluating nearly 600,00 SNP’s for 90 health conditions $399$399..

http://www.23andme.comhttp://www.23andme.com

Time’s Best Inventions of 2008Time’s Best Inventions of 2008

October 30, 2008 – October 30, 2008 – TIME Magazine TIME Magazine announced that the announced that the Personal Genome Personal Genome Service™ from Service™ from 23andMe, Inc. has 23andMe, Inc. has been named 2008's been named 2008's Invention of the Year.Invention of the Year.

http://www.time.com/time/specials/packages/article/0,28804,1852747_1854493,00.htmlhttp://www.time.com/time/specials/packages/article/0,28804,1852747_1854493,00.html

How Prevalent is the Uptake?How Prevalent is the Uptake?

Availability of Genetic and Availability of Genetic and Genomic TestingGenomic Testing

Prenatal diagnosisPrenatal diagnosis Carrier testingCarrier testing Confirmation of a genetic diagnosisConfirmation of a genetic diagnosis Genetic susceptibility Genetic susceptibility Disease screening/diagnosisDisease screening/diagnosis PharmacogenomicPharmacogenomic Disease profilingDisease profiling

The Essential Nursing Competencies and The Essential Nursing Competencies and Curricula Guidelines for Genetics and GenomicsCurricula Guidelines for Genetics and Genomics

Define essential genetic and genomic Define essential genetic and genomic competencies for competencies for ALL ALL nurses nurses regardless of level of academic regardless of level of academic preparation, practice setting or preparation, practice setting or specialty. specialty. Guide curriculum content based Guide curriculum content based

on the current state of the on the current state of the evidence.evidence.

Provide the basis for evaluating Provide the basis for evaluating nurse competence in genetics nurse competence in genetics and genomics including:and genomics including:

• NCLEXNCLEX• CertificationCertification• Maintaining LicensureMaintaining Licensure

Prepare the nursing workforce to Prepare the nursing workforce to deliver competent nursing care in the deliver competent nursing care in the genomic era of healthcare.genomic era of healthcare.

Organizational PartnershipsOrganizational Partnerships

Established partnership Established partnership with key organizationswith key organizations Health Resources and Health Resources and

Services AdministrationServices Administration American Nurses American Nurses

Association Association Centers for Disease ControlCenters for Disease Control National Institute of Nursing National Institute of Nursing

ResearchResearch

Competency FrameworkCompetency Framework

Consistent with existing competencies Consistent with existing competencies and Scope/Standards of Practiceand Scope/Standards of Practice

Applicable to all nurses regardless of Applicable to all nurses regardless of academic preparation, role, specialtyacademic preparation, role, specialty

Focus on genetics AND genomicsFocus on genetics AND genomics Clients considered persons, families, Clients considered persons, families,

communities and/or populationscommunities and/or populations Written consistent with Bloom’s Written consistent with Bloom’s

TaxonomyTaxonomy

Competency DevelopmentCompetency Development Identified, analyzed, reviewed and Identified, analyzed, reviewed and

compared available peer reviewed compared available peer reviewed published work reporting practice-based published work reporting practice-based genetic and genomic competencies, genetic and genomic competencies, guidelines, and recommendations. guidelines, and recommendations.

Competencies drafted, reviewed, modified Competencies drafted, reviewed, modified and approved by a Steering Committee.and approved by a Steering Committee.

Competencies reviewed and modified by Competencies reviewed and modified by nurse representatives to the National nurse representatives to the National Coalition for Health Professional Education Coalition for Health Professional Education in Genetics (NCHPEG) in January, 2005.in Genetics (NCHPEG) in January, 2005.

Public comment was solicited with Public comment was solicited with revisions incorporated.revisions incorporated.

Consensus Meeting Consensus Meeting September 21-22, 2005 September 21-22, 2005

http://www.nursingworld.org/ethics/geneticshttp://www.nursingworld.org/ethics/genetics

Essential CompetenciesEssential Competencies

Two Domains Professional Responsibilities Professional Practice

Assessment Identification Referral Provision of Education, Care & Support

Professional ResponsibilitiesProfessional Responsibilities Recognize when one’s own attitudes and values related to genetic Recognize when one’s own attitudes and values related to genetic

and genomic science may affect care provided to clientsand genomic science may affect care provided to clients Advocate for clients access to desired genetic/genomic services Advocate for clients access to desired genetic/genomic services

and/or resourcesand/or resources Examine competency of practice on a regular basis, identifying Examine competency of practice on a regular basis, identifying

areas of strength, as well as areas in which professional areas of strength, as well as areas in which professional development related to genetics and genomics would be development related to genetics and genomics would be beneficialbeneficial

Incorporate genetic and genomic technologies and information Incorporate genetic and genomic technologies and information into registered nurse practiceinto registered nurse practice

Demonstrate in practice the importance of tailoring genetic and Demonstrate in practice the importance of tailoring genetic and genomic information and services to clients based on their genomic information and services to clients based on their culture, religion, knowledge level, literacy and preferred culture, religion, knowledge level, literacy and preferred languagelanguage

Advocate for the rights of all clients for autonomous, informed Advocate for the rights of all clients for autonomous, informed genetic and genomic related decision-making and voluntary genetic and genomic related decision-making and voluntary actionaction

AssessmentAssessmentThe registered nurse:The registered nurse: Demonstrates an understanding of Demonstrates an understanding of

the relationship of the relationship of genetics/genomics to health, genetics/genomics to health, prevention, screening, diagnostics, prevention, screening, diagnostics, prognostics, selection of treatment, prognostics, selection of treatment, and monitoring of treatment and monitoring of treatment effectivenesseffectiveness

Demonstrates ability to elicit a Demonstrates ability to elicit a minimum of three generation minimum of three generation family health history informationfamily health history information

Constructs pedigree from collected Constructs pedigree from collected family history information using family history information using standardized symbols and standardized symbols and terminologyterminology

Assessment, continuedAssessment, continued Collects personal, health and developmental histories that consider Collects personal, health and developmental histories that consider

genetic, environmental, and genomic influences and risksgenetic, environmental, and genomic influences and risks Conducts comprehensive health and physical assessments that Conducts comprehensive health and physical assessments that

incorporates knowledge about genetic, environmental, and incorporates knowledge about genetic, environmental, and genomic influences and risk factorsgenomic influences and risk factors

Critically analyzes the history and physical assessment findings Critically analyzes the history and physical assessment findings for genetic, environmental, and genomic influences and risk for genetic, environmental, and genomic influences and risk factorsfactors

Assesses clients’ knowledge, perceptions, and responses to Assesses clients’ knowledge, perceptions, and responses to genetic and genomic informationgenetic and genomic information

Develops plan of care that incorporates genetic and genomic Develops plan of care that incorporates genetic and genomic assessment informationassessment information

Provision of Education, Care & SupportProvision of Education, Care & Support

The registered nurse:The registered nurse: Provides clients with interpretation of selective genetic and Provides clients with interpretation of selective genetic and

genomic information or servicesgenomic information or services Provides clients with genetic and genomic credible, accurate, Provides clients with genetic and genomic credible, accurate,

appropriate and current information, resources, services and/or appropriate and current information, resources, services and/or technologies that facilitate decision-makingtechnologies that facilitate decision-making

Uses health promotion/disease prevention practices that:Uses health promotion/disease prevention practices that:• Considers genetic and genomic influences on risk with Considers genetic and genomic influences on risk with

personal and environmental risk factorspersonal and environmental risk factors• Incorporates knowledge of genetic and/or genomic risk Incorporates knowledge of genetic and/or genomic risk

factors (e.g., a client with a genetic predisposition for high factors (e.g., a client with a genetic predisposition for high cholesterol that can benefit from a change in lifestyle that will cholesterol that can benefit from a change in lifestyle that will decrease the likelihood that the genetic risk will be expressed)decrease the likelihood that the genetic risk will be expressed)

Uses genetic and genomic-based interventions and information Uses genetic and genomic-based interventions and information to improve clients’ outcomesto improve clients’ outcomes

Provision of Education, Care & Support, Provision of Education, Care & Support, ContinuedContinued

Collaborates with healthcare Collaborates with healthcare providers in providing genetic and providers in providing genetic and genomic health caregenomic health care

Collaborates with insurance Collaborates with insurance providers/payers to facilitate providers/payers to facilitate reimbursement for genetic and reimbursement for genetic and genomic health care servicesgenomic health care services

Performs interventions/treatments Performs interventions/treatments appropriate to clients’ genetic and appropriate to clients’ genetic and genomic health care needsgenomic health care needs

Evaluates impact and effectiveness Evaluates impact and effectiveness of genetic and genomic technology, of genetic and genomic technology, information, interventions, and information, interventions, and treatments on clients’ outcometreatments on clients’ outcome

IdentificationIdentificationThe registered nurse:The registered nurse: Identifies clients who may benefit from specific Identifies clients who may benefit from specific

genetic and genomic information and/or services genetic and genomic information and/or services based on assessment databased on assessment data

Identifies credible, accurate, appropriate and Identifies credible, accurate, appropriate and current genetic and genomic information, current genetic and genomic information, resources, services and/or technologies specific resources, services and/or technologies specific to given clientsto given clients

Identifies ethical, ethnic/ancestral, cultural, Identifies ethical, ethnic/ancestral, cultural, religious, legal, fiscal, and societal issues related religious, legal, fiscal, and societal issues related to genetic and genomic information and to genetic and genomic information and technologiestechnologies

Defines issues that undermine the rights of all Defines issues that undermine the rights of all clients for autonomous, informed genetic and clients for autonomous, informed genetic and genomic-related decision-making and voluntary genomic-related decision-making and voluntary actionaction

ReferralReferralThe registered nurse:The registered nurse: Facilitates referrals for specialized genetic and Facilitates referrals for specialized genetic and

genomic services for clients as neededgenomic services for clients as needed

Endorsement StatusEndorsement Status 49 organizations have endorsed including49 organizations have endorsed including

American Academy of NursingAmerican Academy of Nursing American Association of Colleges of NursingAmerican Association of Colleges of Nursing American Nursing AssociationAmerican Nursing Association American Nurses Credentialing CenterAmerican Nurses Credentialing Center International Society of Nurses in GeneticsInternational Society of Nurses in Genetics National Coalition for Health Professional Education in GeneticsNational Coalition for Health Professional Education in Genetics National League for NursingNational League for Nursing National League for Nursing Accrediting CommissionNational League for Nursing Accrediting Commission Oncology Nursing SocietyOncology Nursing Society Sigma Theta TauSigma Theta Tau Southern Regional Education Board Council on Collegiate Education for Southern Regional Education Board Council on Collegiate Education for

NursingNursing Unsolicited, endorsements have been received from Unsolicited, endorsements have been received from

schools of nursingschools of nursing

Outcome IndicatorsOutcome Indicators Adjunct to the Essential Nursing Competencies and

Curricula Guidelines for Genetics and Genomics Intended to define for each competency

Specific areas of knowledge Clinical performance indicators

Specific Areas of KnowledgeSpecific Areas of Knowledge Clinical Performance Clinical Performance IndicatorsIndicators

Components of family history needed to Components of family history needed to identify disease susceptibility or identify disease susceptibility or genetic/genomic conditiongenetic/genomic condition Standard pedigree nomenclatureStandard pedigree nomenclature Type of information that needs to be collected Type of information that needs to be collected and recorded such as:and recorded such as:

Disease and age of onset, ethnicity, both maternal Disease and age of onset, ethnicity, both maternal and paternal lineagesand paternal lineages

Three generationsThree generations Existing family history toolsExisting family history tools

Collect a client’s personal and Collect a client’s personal and three generation family health three generation family health history to assess for genomic history to assess for genomic factors that impact the client’s factors that impact the client’s health. health.

A Short StoryA Short Story

““It’s one of those times in your It’s one of those times in your life that you are grateful you had life that you are grateful you had

the knowledge.”the knowledge.”

Quote from:Quote from:Barbara Ganster, RN, BSNBarbara Ganster, RN, BSN

Breast Cancer Case ManagerBreast Cancer Case ManagerNational Naval Medical CenterNational Naval Medical Center

November 19, 2008November 19, 2008

QuestionsQuestions

[email protected]@mail.nih.gov301-435-0538301-435-0538

[email protected]@nih.gov301-496-4601301-496-4601

http://www.genome.gov/Pages/Careers/HealthProfessionalEducation/geneticscompetency.pdfhttp://www.genome.gov/Pages/Careers/HealthProfessionalEducation/geneticscompetency.pdf

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Genetics/Genomics Nursing Competency PowerPoint II