Title: GeneticsGenomics Nursing Competency: Implications for Education, Practice and Research
1Genetics/Genomics Nursing Competency
Implications for Education, Practice and Research
Kathleen Calzone, MSN, RN, APNG, FAAN National
Institutes of Health, National Cancer Institute,
Center for Cancer Research-Genetics
Branch and Jean Jenkins, PhD, RN, FAAN National
Institutes of Health, National Human Genome
Research Institute
2Definitions
- Genetics study of individual genes and their
impact on relatively rare single gene disorders - Genomics study of all the genes in the human
genome together, including their interactions
with each other, the environment, and other
psychosocial and cultural factors
3Overview of the Session
- Relevance of Genetics and Genomics to Nursing
Practice - The Essential Nursing Competencies and Curricula
Guidelines for Genetics and Genomics - Competency Outcome Indicators
- Genetics/Genomics and AACN Baccalaureate
Essentials - Models of Genetic and Genomic Curriculum
Integration Resources for Nursing Educators - Implications for Nursing Research
- Discussion/Questions and Answers
4Cumulative Pace of Disease Gene Discovery
1981-2005
Number of Genes Associated with Disease
Year
Source Online Mendelian Inheritance in Man
5Nursing Population
- There 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 Survey Of Registered Nurses ,
March 2004., HRSA, Bureau of Health Professions,
Division of Nursing.
6Nursing 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.
https//www.ncsbn.org/2007_NCLEX_RN_Detailed_Test_
Plan_Candidate.pdf
7Barriers to Incorporating Genetics and Genomics
into Nursing Curricula
- 2005 Nursing Faculty Survey (N224)
- AIM Determine status of genetics content in
nursing curricula and compare to 1996 faculty
survey - 29 of schools reported no genetic or genomic
curriculum content (no change from 1996) - Barriers
- Curriculum too full (92)
- Faculty not knowledgeable about genetics
(59.4) - Not high enough priority (34.4)
- Not covered in NCLEX (24.6)
- Not important for certification (10.3)
- Not essential to nursing care (9.4)
- Not applicable or relevant to nursing practice
(2.2)
Prows, C., Calzone, K., Jenkins, J. (2006).
Genetics content in nursing curriculum. Proc. of
NCHPEG.
8Estimated Curricular Time Spent on Genetic
Content Categories
Prows, C., Calzone, K., Jenkins, J. (2006).
Genetics content in nursing curriculum. Proc. of
NCHPEG.
9- Genetics and genomics mentioned 16 times not
including genetic/genomic concepts such as
pedigrees and pharmacogenomics.
10Executive Summary This document emphasizes such
concepts as patient-centered care,
interprofessional teams, evidence-based practice,
quality improvement, patient safety, informatics,
clinical reasoning/critical thinking, genetics
and genomics, cultural sensitivity,
professionalism, and practice across the lifespan
in an ever-changing and complex healthcare
environment.
11- Introduction
-
- Scientific advances, particularly in the areas
of genetics and genomics, have had and will
continue to have a growing and significant impact
on prevention, diagnosis, and treatment of
diseases, illnesses, and conditions. - Strong forces influencing the role of nurses
include - Scientific advances, particularly in the area
of genetics and genomics.
12The Discipline of Nursing Scientific advances,
(particularly in the areas of genetics and
genomics), changing demographics of patient
populations, new care technologies, and patient
access to health care information call for new
ways of thinking and doing in health care.
13- Essential V Healthcare Policy, Finance, and
Regulatory Environments -
- Sample Content
- Impact of social trends such as genetics and
genomics, childhood obesity and aging on health
policy.
14- Essential VII Clinical Prevention and Population
Health -
- Rationale
- Epidemiologic studies show that lifestyle,
environmental, and genetic factors are major
determinants of population health in areas of
health, illness, disease, disability, and
mortality.
15- Essential VII Clinical Prevention and Population
Health -
- The baccalaureate program prepares the graduate
to - Access protective and predictive factors,
including genetics, which influence the health of
individuals, families, groups, communities, and
populations. - Conduct a health history, including
environmental exposure and a family history that
recognizes genetic risks, to identify current and
future health problems.
16- Essential VII Clinical Prevention and Population
Health -
- Sample Content
- genetics and genomics.
- Pedigree from a three-generation family health
history using standardized symbols and
terminology.
17Essential VIII Professionalism and Professional
Values Rationale In addition, nurses are
prepared to work with patients across the
lifespan who require genetic technologies and
treatment.
18Essential IX Baccalaureate Generalist Nursing
Practice Rationale In addition, nurses are
prepared to work with patients across the
lifespan who require genetic technologies and
treatment. For example, genetics and genomics
are areas where knowledge is escalating and the
graduate will be cognizant of customized
therapies designed to improve care outcomes.
19Essential IX Baccalaureate Generalist Nursing
Practice The baccalaureate program prepares the
graduate to 2. Recognize the relationship of
genetics and genomics to health, prevention,
screening, diagnostics, prognostics, selection of
treatment, and monitoring of treatment
effectiveness, using a constructed pedigree from
collected family history information as well as
standardized symbols and terminology.
20- Essential IX Baccalaureate Generalist Nursing
Practice -
- Sample Content
- genetics and genomics.
- pharmacology/pharmacogenetics.
21- Summary
-
- Due to the ever-changing and complex healthcare
environment, this document emphasizes such
concepts as patient-centered care,
interprofessional teams, evidence-based practice,
quality improvement, patient safety, informatics,
clinical reasoning/critical thinking, genetics
and genomics, cultural sensitivity,
professionalism, practice across the lifespan,
and end-of-life care.
22Top Ten Leading Causes of Mortality in the US
National Center for Health Statistics.
http//www.cdc.gov/nchs/fastats/deaths.htm
23Gene Discoveries for Common Complex Diseases
Type 2 Diabetes Prostate Cancer Systemic Lupus
Erythematosus Myocardial Infarction Inflammatory
Bowel Disease Macular Degeneration
Breast Cancer Alzheimer's Disease
Macular Degeneration
Type 2 Diabetes Psoriasis
Colon Cancer
YR
90
91
92
93
94
95
96
97
98
99
00
01
02
03
04
05
06
07
HapMap Project Completed
Genes and Environment Initiative Launched
Genetic Association Information Network Launched
HapMap Project Initiated
The Cancer Genome Atlas Launched
Human Genome Project Completed
Human Genome Project Begins
NIH Research Initiatives
24- Prologue by HHS Secretary Michael O. Leavitt
- Some Key Points
- Developed powerful pharmaceuticals yet most
drugs prescribed in the US today are effective in
fewer than 60 of treated patients. This efficacy
rate reflects the variability of metabolism or
other factors from person to person. - Our definitions of diseases remain rooted in
18th and 19th century terms.
http//www.hhs.gov/myhealthcare/news/phc_2008_repo
rt.pdf
25Goal of Personalized Medicine
- Help us achieve the right diagnosis and
prescribe the right medication for the particular
individual and exact condition, steadily
improving on traditional trial-and-error
approaches - Enable us to spot the onset of disease even
before symptoms appear, and take action to
preempt or delay onset of the condition and - Help us identify our own predisposition to
disease, so that we can take more effective steps
to prevent it.
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30FDA Coumadin Labeling
http//www.fda.gov/cder/foi/label/2007/009218s105l
blv2.pdf
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32Emergency Department Visits
- Centers for Disease Control National ED
Surveillance 2004-2005 - Adverse drug events (ADE) defined as undesirable
pharmacologic or idiosyncratic effects from
medications administered at correct dosages. - ADEs accounted for gt 200,000 ED visits
- ADEs accounted for gt 36,000 hospitalizations
- Among individuals gt65 y/o 17.3 of ED visits were
associated with ADEs from warfarin.
Budnitz, D.S., et al. (2006). National
surveillance of emergency department visits for
outpatient adverse drug events. JAMA, 296,
1858-1866. 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.
33Environment and personal factors play a role in
individual variation
34Direct to Consumer Marketing
- Two Separate Issues
- Claims made about the tests to induce purchase
(e.g., through advertising) - Sale of genetic testing services and provision of
test results directly to consumers
http//www.navigenics.com/ http//www.decode.com/
35Direct to Consumer Marketing
- 23andMe
- 23andme launched directly to consumers in
December 2007. - Saliva Sample.
- Evaluating nearly 600,00 SNPs for 90 health
conditions 399.
http//www.23andme.com
36Times Best Inventions of 2008
- October 30, 2008 TIME Magazine announced that
the Personal Genome Service from 23andMe, Inc.
has been named 2008's Invention of the Year.
http//www.time.com/time/specials/packages/article
/0,28804,1852747_1854493,00.html
37How Prevalent is the Uptake?
38Availability of Genetic and Genomic Testing
- Prenatal diagnosis
- Carrier testing
- Confirmation of a genetic diagnosis
- Genetic susceptibility
- Disease screening/diagnosis
- Pharmacogenomic
- Disease profiling
39The Essential Nursing Competencies and Curricula
Guidelines for Genetics and Genomics
- Define essential genetic and genomic competencies
for ALL nurses regardless of level of academic
preparation, practice setting or specialty. - Guide curriculum content based on the current
state of the evidence. - Provide the basis for evaluating nurse competence
in genetics and genomics including - NCLEX
- Certification
- Maintaining Licensure
- Prepare the nursing workforce to deliver
competent nursing care in the genomic era of
healthcare.
40Organizational Partnerships
- Established partnership with key organizations
- Health Resources and Services Administration
- American Nurses Association
- Centers for Disease Control
- National Institute of Nursing Research
41Competency Framework
- Consistent with existing competencies and
Scope/Standards of Practice - Applicable to all nurses regardless of academic
preparation, role, specialty - Focus on genetics AND genomics
- Clients considered persons, families, communities
and/or populations - Written consistent with Blooms Taxonomy
42Competency Development
- Identified, analyzed, reviewed and compared
available peer reviewed published work reporting
practice-based genetic and genomic competencies,
guidelines, and recommendations. - Competencies drafted, reviewed, modified and
approved by a Steering Committee. - Competencies reviewed and modified by nurse
representatives to the National Coalition for
Health Professional Education in Genetics
(NCHPEG) in January, 2005. - Public comment was solicited with revisions
incorporated.
43Consensus Meeting September 21-22, 2005
http//www.nursingworld.org/ethics/genetics
44Essential Competencies
- Two Domains
- Professional Responsibilities
- Professional Practice
- Assessment
- Identification
- Referral
- Provision of Education, Care Support
45Professional Responsibilities
- Recognize when ones own attitudes and values
related to genetic and genomic science may affect
care provided to clients - Advocate for clients access to desired
genetic/genomic services and/or resources - Examine competency of practice on a regular
basis, identifying areas of strength, as well as
areas in which professional development related
to genetics and genomics would be beneficial - Incorporate genetic and genomic technologies and
information into registered nurse practice - Demonstrate in practice the importance of
tailoring genetic and genomic information and
services to clients based on their culture,
religion, knowledge level, literacy and preferred
language - Advocate for the rights of all clients for
autonomous, informed genetic and genomic related
decision-making and voluntary action
46Assessment
- The registered nurse
- Demonstrates an understanding of the relationship
of genetics/genomics to health, prevention,
screening, diagnostics, prognostics, selection of
treatment, and monitoring of treatment
effectiveness - Demonstrates ability to elicit a minimum of three
generation family health history information - Constructs pedigree from collected family history
information using standardized symbols and
terminology
47Assessment, continued
- Collects personal, health and developmental
histories that consider genetic, environmental,
and genomic influences and risks - Conducts comprehensive health and physical
assessments that incorporates knowledge about
genetic, environmental, and genomic influences
and risk factors - Critically analyzes the history and physical
assessment findings for genetic, environmental,
and genomic influences and risk factors - Assesses clients knowledge, perceptions, and
responses to genetic and genomic information - Develops plan of care that incorporates genetic
and genomic assessment information
48Provision of Education, Care Support
- The registered nurse
- Provides clients with interpretation of selective
genetic and genomic information or services - Provides clients with genetic and genomic
credible, accurate, appropriate and current
information, resources, services and/or
technologies that facilitate decision-making - Uses health promotion/disease prevention
practices that - Considers genetic and genomic influences on risk
with personal and environmental risk factors - Incorporates knowledge of genetic and/or genomic
risk factors (e.g., a client with a genetic
predisposition for high cholesterol that can
benefit from a change in lifestyle that will
decrease the likelihood that the genetic risk
will be expressed) - Uses genetic and genomic-based interventions and
information to improve clients outcomes
49Provision of Education, Care Support, Continued
- Collaborates with healthcare providers in
providing genetic and genomic health care - Collaborates with insurance providers/payers to
facilitate reimbursement for genetic and genomic
health care services - Performs interventions/treatments appropriate to
clients genetic and genomic health care needs - Evaluates impact and effectiveness of genetic and
genomic technology, information, interventions,
and treatments on clients outcome
50Identification
- The registered nurse
- Identifies clients who may benefit from specific
genetic and genomic information and/or services
based on assessment data - Identifies credible, accurate, appropriate and
current genetic and genomic information,
resources, services and/or technologies specific
to given clients - Identifies ethical, ethnic/ancestral, cultural,
religious, legal, fiscal, and societal issues
related to genetic and genomic information and
technologies - Defines issues that undermine the rights of all
clients for autonomous, informed genetic and
genomic-related decision-making and voluntary
action
51Referral
- The registered nurse
- Facilitates referrals for specialized genetic and
genomic services for clients as needed
52Endorsement Status
- 49 organizations have endorsed including
- American Academy of Nursing
- American Association of Colleges of Nursing
- American Nursing Association
- American Nurses Credentialing Center
- International Society of Nurses in Genetics
- National Coalition for Health Professional
Education in Genetics - National League for Nursing
- National League for Nursing Accrediting
Commission - Oncology Nursing Society
- Sigma Theta Tau
- Southern Regional Education Board Council on
Collegiate Education for Nursing - Unsolicited, endorsements have been received from
schools of nursing
53Outcome 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
54A Short Story
55Its one of those times in your life that you
are grateful you had the knowledge.
- Quote from
- Barbara Ganster, RN, BSN
- Breast Cancer Case Manager
- National Naval Medical Center
- November 19, 2008
56Questions
calzonek_at_mail.nih.gov 301-435-0538 Jean.Jenkins_at_n
ih.gov 301-496-4601
http//www.genome.gov/Pages/Careers/HealthProfessi
onalEducation/geneticscompetency.pdf