ESSENTIAL NURSING COMPETENCIES AND CURRICULA GUIDELINES FOR GENETICS AND GENOMICS Established by Consensus Panel, September 21–22, 2005
ESSENTIAL NURSING COMPETENCIES
AND CURRICULA GUIDELINES
FOR GENETICS AND
GENOMICS
Established by Consensus Panel,September 21–22, 2005
ESSENTIAL NURSING COMPETENCIES
AND CURRICULA GUIDELINES
FOR GENETICS AND
GENOMICS
Established by Consensus Panel, September 21–22, 2005and published by the American Nurses Association,
Silver Spring, Maryland 2006
Library of Congress Cataloging-in-Publication data
Essential nursing competencies and curricula guidelines for genetics andgenomics : established by consensus panel, September 21-22, 2005 / Jean F.Jenkins ... [et al.].
p. ; cm.Includes bibliographical references.ISBN-13: 978-1-55810-239-2ISBN-10: 1-55810-239-61. Genetic counseling. 2. Nursing. 3. Genomes. 4. Medical genetics. I. Jenkins,Jean F. II. American Nurses Association.[DNLM: 1. Genetics, Medical--standards--United States--Guideline. 2.Education, Nursing--standards--United States--Guideline. 3. Genomics--stan-dards--United States--Guideline. 4. Professional Competence--standards--United States--Guideline. QZ 50 E78 2006]
RB155.7.E872 2006362.196'042--dc22
2006023922
This publication — Essential Nursing Competencies and Curricula Guidelines forGenetics and Genomics — reflects the thinking of the nursing profession onvarious issues and should be reviewed in conjunction with state board ofnursing policies and practices. State law, rules, and regulations govern thepractice of nursing, while Essential Nursing Competencies and CurriculaGuidelines for Genetics and Genomics guides nurses in the application of theirprofessional skills and responsibilities.
Support for this initiative has been obtained from:• National Human Genome Research Institute, National Institutes of Health• Office of Rare Diseases, National Institutes of Health• American Nurses Association
A limited number of print copies are available from NHGRI, NIH Bldg. 31 Rm. 4B09 Bethesda, MD 20892-2152 or the PDF can be accessed athttp://www.genome.gov OR http://www.nursingworld.org/ethics/genetics
© 2006 American Nurses Association. All rights reserved. Any part of this bookmay be reproduced or utilized in any form or any means without permissionin writing from the publisher. Please do, however, cite this publication as thesource: Consensus Panel on Genetic/Genomic Nursing Competencies (2006).Essential Nursing Competencies and Curricula Guidelines for Genetics andGenomics. Silver Spring, MD: American Nurses Association.
ISBN-13: 978-1-55810-239-2 ISBN-10: 1-55810-239-6Published September 2006.
Table of Contents iii
TABLE OF CONTENTS
Preamble .................................................................................................................... 1
Contributors, Consensus Panel, and Endorsing Organizations ...... 2
Background and Context of the Competencies ...................................... 7Purpose ............................................................................................................ 8Applicability .................................................................................................... 8Definitions ...................................................................................................... 8Development of the Competencies and Process of Consensus .... 9
Resource/Reference Documents .................................................... 9Competency Development ............................................................ 10Process of Consensus ........................................................................ 10
Essential Competencies .................................................................................. 11Professional Responsibilities .................................................................. 11Professional Practice Domain ................................................................ 11
Nursing Assessment: Applying/Integrating Genetic and Genomic Knowledge ........................................ 11
Identification ........................................................................................ 12Referral Activities ................................................................................ 12Provision of Education, Care, and Support ................................ 13
Implementation Strategies ............................................................................ 15Key Strategies .............................................................................................. 15Incorporation of Competencies, Content,
and Teaching Strategies into the Curriculum .......................... 16
References Cited in Text .................................................................................. 19
Appendix A. Resources to Support the Genetics and Genomics Competencies .............................................................................................. 23
Books and Monographs .......................................................................... 24Career Development: Continuing Education .................................. 27Career Development: Post-Graduate Programs .............................. 29Clinical Genetics ........................................................................................ 31Consumer/Client: General Information .............................................. 32
iv Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Consumer/Client: Support and Advocacy Groups ........................ 34ELSI (Ethical, Legal, and Social Implications),
Policy, and Legislation ...................................................................... 35Family History Tools .................................................................................. 38Genome Research ...................................................................................... 39Health Professional Practice and Education .................................... 41Institutional Review Boards (IRBs) ........................................................ 44News Sites Specializing in Genetics and Genomics ...................... 45Professional Organizations: Genetics .................................................. 46Professional Organizations: Nursing Practice .................................. 47Risk Assessment .......................................................................................... 49Search Engines Specializing in Genetics and Genomics ............ 50United States Government Agencies .................................................. 51
Preamble 1
PREAMBLE
Genomics is a central science for all nursing practice because essen-tially all diseases and conditions have a genetic or genomic compo-nent. Health care for all persons will increasingly include genetic andgenomic information along the pathways of prevention, screening,diagnostics, prognostics, selection of treatment, and monitoring oftreatment effectiveness.
The essential competencies were developed by an independentpanel of nurse leaders from clinical, research, and academic settings(identified on the next page) whose goal was to establish the mini-mum basis by which to prepare the nursing workforce to deliver com-petent genetic- and genomic-focused nursing care. These competen-cies are not intended to replace or recreate existing standards of practice,but are intended to incorporate the genetic and genomic perspective intoall nursing education and practice.
The competencies were developed on the basis of:
• The results of a review of peer-reviewed published workreporting practice-based genetic and genomic competen-cies, guidelines, and recommendations.
• Input from nurse representatives to the National Coalitionfor Health Professional Education in Genetics (NCHPEG)meeting in January, 2005.
• Public comment from the nursing community at large.• Statements from conference attendees during open com-
ment periods during a two-day meeting of key stakeholders(listed on pages 3 and 4) held September 21 and 22, 2005.
The competencies are based on the state of the evidence avail-able at the time they were developed and reflect the MINIMAL amountof genetic and genomic competency expected by every nurse. Thesecompetencies reflect a consensus and are NOT from any federal agencyor single nursing organization, and they are applicable to the practiceof all registered nurses regardless of academic preparation, practicesetting, role, or specialty.
The nursing organizations that have endorsed the competencies (see pages 5 and 6) agree with the content, and they support and promote initiatives within their own organization to implement the competencies.
2 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
CONTRIBUTORS, CONSENSUS PANEL,AND ENDORSING ORGANIZATIONS
Steering Committee Co-ChairsJean Jenkins, PhD, RN, FAAN National Human Genome
Research Institute
Kathleen Calzone, MSN, RN, APNG International Society of Nurses in Genetics
National Cancer Institute
MembersLaurie Badzek, RN, MS, JD, LLM American Nurses Association
Carolyn Constantin, RNC, PhD Centers for Disease Control and Prevention
Annette Debisette, DNSc, RN, ANP Health Resources and Services Administration
Suzanne Feetham, PhD, RN, FAAN Health Resources and Services Administration
Denise Geolot, PhD, RN, FAAN Health Resources and Services Administration
Pamela Hagan, MSN, RN American Nurses Association
Madeleine Hess, PhD, RN Health Resources and Services Administration
Dale Lea, MS, RN, MPH, CGC, APNG, FAAN National Human Genome Research Institute
Judith Lewis, PhD, RNC, FAAN Virginia Commonwealth University
Kerry Nesseler, MS, RN Health Resources and Services Administration
Kathleen Potempa, DNSc, RN, FAAN Oregon Health and Science University
Cynthia Prows, MSN, RN Cincinnati Children's Hospital Medical Center
Elizabeth Thomson, DNSc, RN, CGC, FAAN National Human Genome Research Institute
Melinda Tinkle, PhD, RN National Institute of Nursing Research
Janet Williams, PhD, RN, FAAN University of Iowa
Contributors, Consensus Panel, and Endorsing Organizations 3
Consensus PanelBadzek, Laurie American Nurses Association (ANA)
Beauchesne, Michelle National Organization of Nurse PractitionerFaculties
Bickford, Carol American Nurses Association (ANA)
Calzone, Kathleen A. International Society of Nurses in Genetics (ISONG)
National Cancer Institute/NIH
Cashion, Ann King University of Tennessee Health Science Center
Chornick, Nancy National Council of State Boards of Nursing
Debisette, Annette Tyree DHHS/HRSA/BHPr/OAA
Feetham, Suzanne DHHS/HRSA/Center for Quality
Fete, Mary Dermatology Nurses Association
Geolot, Denise H. DHHS/HRSA/BHPr/DN
Goolsby, Mary Jo American Academy of Nurse Practitioners
Greco, Karen Elaine Oregon Health and Science University
Hagan, Pam American Nurses Association (ANA)
Hess, Madeleine DHHS/HRSA/BHPr/Gec
Hickey, Joanne American Nurses Credentialing Center (ANCC)
Jenkins, Jean F. National Human Genome Research Institute/NIH
Jungquist, Carla American Society for Pain Management Nursing (ASPMN)
Kenner, Carole A. National Association of Neonatal Nurses
Kirk, Maggie University of GlamorganNMS National Genetics Education and Development Centre
Lea, Dale Halsey National Human Genome Research Institute/NIH
Lewis, Judith A. Virginia Commonwealth University
Littlejohn, Sandra National Alaska Native American Indian Nurses Association
Malloy, Pam American Association of Colleges of Nursing (AACN)
Masny, Agnes Oncology Nursing Society (ONS)
Messmer, Patricia R. NLNAC and Miami Children's Hospital
4 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Moore, Mary Kay Developmental Disabilities Nurses Association
Mott, Sandra Society of Pediatric Nurses
Nesseler, Kerry Paige DHHS/HRSA/BHPr
Olsen, Sharon The Johns Hopkins University School of Nursing/SREB
Picard, Carol Sigma Theta Tau International
Potempa, Kathleen Oregon Health and Science University
Prows, Cynthia A. Children's Hospital Medical Center
Puetz, Belinda E. National Nursing Staff Development Organization
Ramirez, Carmen T. National Association Hispanic Nurses
Repta, Shirley American Psychiatric Nurses Association
Rivera, Reynaldo Philippine Nurses Association of America
Ruhl, Catherine Association of Women's Health,Obstretric and Neonatal Nurses (AWHONN)
Rust, Jo Ellen National Association of Clinical Nurse Specialists
Ryan-Kraus, Patricia National Association of Pediatric Nurse Practitioners (NAPNAP)
Scales, Rosemary Pediatric Endocrinology Nursing Society
Schiefelbein, Julieanne The Academy of Neonatal Nursing
Schumann, Mary Jean American Nurses Association (ANA)
Shaver, Joan American Academy of Nursing
Shinn, Linda J. Consensus Management Group
Thomson, Elizabeth National Human Genome Research Institute/NIH/ELSI Research
Tinkle, Melinda National Institute for Nursing Research (NINR)
Valiga, Theresa M. National League for Nursing (NLN)
Wicks, Terry C. American Association of Nurse Anesthetists
Williams, Charlene American Academy of Ambulatory Care Nursing (AAACN)
Williams, Janet K. University of Iowa
Yeo, Seonae Asian American/Pacific Islander Nurses Association
Contributors, Consensus Panel, and Endorsing Organizations 5
Academy of Medical-SurgicalNurses
Academy of Neonatal Nurses LLC
American Academy of AmbulatoryCare Nursing
American Academy of Nursing
American Association of Collegesof Nursing
American Association ofNeuroscience Nurses
American Association ofOccupational Health Nurses
American Nephrology NursesAssociation
American Nurses Association
American Nurses CredentialingCenter
American Psychiatric NursesAssociation
American Radiological NursesAssociation
American Society of PainManagement Nursing
American Society of Plastic SurgicalNurses
Association of Pediatric OncologyNurses
Association of periOperativeRegistered Nurses
Association of Women's Health,Obstetric and Neonatal Nurses
Council of Cardiovascular Nursingof the American HeartAssociation
Council of International NeonatalNurses
Dermatology Nurses Association
Developmental Disabilities NursesAssociation
Genetic Alliance
Hospice and Palliative NursesAssociation
International Society of Nurses inGenetics
March of Dimes
National Association of ClinicalNurse Specialists
National Association of HispanicNurses
National Association of NeonatalNurses
National Association of OrthopedicNurses
National Association of PediatricNurse Practitioners
National Coalition of EthnicMinority Nurse Associations
National Conference ofGerontological NursePractitioners
National Gerontological NursingAssociation
National League for Nursing
National League for NursingAccrediting Commission
National Nursing StaffDevelopment Organization
National Organization of NursePractitioner Faculties
Oncology Nursing Society
Pediatric Endocrinology NursingSociety
Endorsing Organizations
6 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Philippine Nurses Association ofAmerica
Sigma Theta Tau International
Society for Vascular Nursing
Society of Pediatric Nurses
Society of Urologic Nurses andAssociates
Southern Regional EducationBoard Council on CollegiateEducation for Nursing
Johns Hopkins University School ofNursing
Nell Hodgson Woodruff School ofNursing, Emory University
Endorsing Schools of Nursing
BACKGROUND AND CONTEXT OF THE COMPETENCIES
Genetic and genomic science is redefining the understanding of thecontinuum of human health and illness. Therefore, recognition ofgenomics as a central science for health professional knowledge isessential. Because essentially all diseases and conditions have a genet-ic or genomic component, options for care for all persons will increas-ingly include genetic and genomic information along the pathways ofprevention, screening, diagnostics, prognostics, selection of treatment,and monitoring of treatment effectiveness. The clinical application ofgenetic and genomic knowledge has major implications for the entirenursing profession regardless of academic preparation, role, or prac-tice setting.
The public will increasingly expect that the registered nurse (RN)will use genetic and genomic information and technology when pro-viding care. These expectations have direct implications for RNpreparatory curricula, as well as for the 2.9 million practicing nurses.The rate of progress for applying a genomic approach throughout thecontinuum of care depends not only on technologic advances, butalso on nursing expertise. In its report on genetics and nursing in2000, an expert Health Resources and Services Administration (HRSA)panel emphasized the importance of integrating genetics content intonursing curricula in order to provide an adequately prepared nursingworkforce now and for the future.1 To care for persons/families/communities and/or populations throughout the life span, registerednurses will need to demonstrate proficiency with incorporatinggenetic and genomic information into their practice. For example:
• Understand the genetic and genomic basis of health and/oran illness for which the person is seeking care and the vari-ables that impact his or her response.
• Recognize a newborn at risk for morbidity or mortalityresulting from genetic metabolism errors.
• Identify an asymptomatic adolescent who is at high risk forhereditary colon cancer.
• Identify a couple at risk for having a child with a geneticcondition.
• Guide interventions for the prevention of cardiovascular dis-ease in young adults.
Background and Context of the Competencies 7
• Facilitate drug selection or dosage in treatment of an adultwith cancer based on molecular markers.
• Promote informed consent that includes the risks, benefits,and limitations of participation in genetic research.
• Assist anyone having questions about genetic and genomicinformation or services.
• Identify Caucasians of northern European descent (a popula-tion at risk for hemachromatosis) who have joint disease,severe and continuing fatigue, heart disease, elevated liverenzymes, impotence, and diabetes, because they are candi-dates for hemochromatosis HFE genetic testing.
Purpose The primary purpose of this document is to define essential geneticand genomic competencies for all registered nurses. This document isintended to guide nurse educators in the design and implementationof learning experiences that help students/learners/practicing nursesachieve these genetic and genomic competencies. These competen-cies are not intended to replace or recreate existing standards of prac-tice but are intended to incorporate the genetic and genomic per-spective into all nursing education and practice. The goal is to preparethe nursing workforce to deliver competent genetic- and genomic-focused nursing care.
ApplicabilityThe genetic and genomic competencies are integral to the practice ofall registered nurses regardless of academic preparation, practice set-ting, role, or specialty.
DefinitionsThe first two definitions of two central and somewhat overlappingterms remain a work in progress, because the new knowledge pro-duced by genome research will create an ongoing need to assess andrevise our understanding of the influence of both genetic and genom-ic factors for health outcomes. For the purpose of this document, bothgenetic and genomic information will be used as the context fordefining required competencies.
• Genetics – Study of individual genes and their impact on rel-atively rare single gene disorders.2
8 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
• Genomics – Study of all the genes in the human genometogether, including their interactions with each other, theenvironment, and the influence of other psychosocial andcultural factors.2
The rest of the key definitions are more established, but areoffered to clarify the use in this report of what can have more generalmeanings:
• Clients – Recipients of health care may include persons, fam-ilies, communities, and/or populations from any race, ethnici-ty/ancestry, culture, or religious background. The term clientswill be used throughout the document to reflect the focusof nursing care.
• Pedigree – A graphic illustration of a family health historyusing standardized symbols.3
• Resources – A collection of genetic and genomic tools andsites for healthcare referrals for delivery of nursing care.
• Services – The delivery of genetic and genomic health care.
• Technology – The use of tools and/or machines to performtasks; in this case, the identification and assessment of geneticand genomic information (e.g., the use of micoarray technolo-gy to assess the genetic features of a specific tumor).
Development of the Competencies andProcess of ConsensusThe development of this document and its underlying competenciesare described below.
Resource/Reference Documents The Steering Committee identified, reviewed, analyzed, and comparedcompetencies recommended in existing published and peer-revieweddocuments.4-12 A pre-publication manuscript by Greco and Salveson13
reported on a qualitative analysis of published competency recom-mendations, including many of the above documents.4, 5, 8, 9 In addition,a competence-based education framework developed in the UnitedKingdom was used as a resource document.14 Analysis of these docu-ments and resources identified fundamental genetic and genomiccompetencies applicable for all registered nurses. A summary of avail-able resources is provided in Appendix A.
Background and Context of the Competencies 9
Competency Development Based on the review of earlier peer-reviewed published work reportingpractice-based genetic and genomic competencies, guidelines, and recom-mendations, a group of nurse leaders from clinical, research, and academicsettings developed these proposed competencies.The proposed compe-tencies were approved by a steering committee of federal, academic, andnational leaders in nursing. In addition, these competencies were reviewedby nurse representatives to the National Coalition for Health ProfessionalEducation in Genetics (NCHPEG) meeting in 2005 with subsequent revisionto integrate their comments.To assist the development process, publiccomments, especially from the nursing community, were solicited.
Process of ConsensusThe four-phase consensus process that guided the creation of this doc-ument is described below.
• Phase I: The Steering Committee reviewed and provided com-ments on the preliminary document.This revised draft docu-ment was shared with nursing representatives attending theNational Coalition for Health Professional Education in Geneticsmeeting (January 2005) to further define and structure theserecommended essential nursing competencies in genetics andgenomics.
• Phase II : Additional review of the revised essentials documentcommenced with the posting for public comment athttp://NursingWorld.org/ethics/genetics and announcement tothe American Nurses Association (ANA) and its constituentmembers and organizational affiliates, the NursingOrganizations AllianceTM, and other nursing organizations. Allcomments were carefully considered and appropriate revisionsincorporated as indicated.
• Phase III: A meeting of key stakeholders was held September 21and 22, 2005, to establish consensus on the final competencydocument by key stakeholders.This meeting’s participants (con-sensus panel) are listed on pages 3 and 4. Strategies to integrategenetic and genomic information into education and practicewere proposed and then discussed, with identification of stepsto include in an action plan for integration of recommendedgenetic and genomic nursing competencies content into curric-ula, the NCLEX examination, specialty certification processes,and accreditation programs.
• Phase IV: Endorsement of the final document by all NursingOrganizations AllianceTM member organizations was requestedby March 2006.
10 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
ESSENTIAL COMPETENCIES
Professional ResponsibilitiesAll registered nurses are expected to engage in professional role activ-ities that are consistent with Nursing: Scope and Standards of Practice(2004) by the American Nurses Association.15 In addition, competentnursing practice now requires the incorporation of genetic andgenomic knowledge and skills in order to:
• Recognize when one’s own attitudes and values related togenetic and genomic science may affect care provided toclients.
• Advocate for clients’ access to desired genetic/genomic serv-ices and/or resources including support groups.
• Examine competency of practice on a regular basis, identify-ing areas of strength, as well as areas in which professionaldevelopment related to genetics and genomics would bebeneficial.
• Incorporate genetic and genomic technologies and informa-tion into registered nurse practice.
• Demonstrate in practice the importance of tailoring geneticand genomic information and services to clients based ontheir culture, religion, knowledge level, literacy, and preferredlanguage.
• Advocate for the rights of all clients for autonomous,informed genetic- and genomic-related decision-makingand voluntary action.
Professional Practice DomainNursing Assessment: Applying/IntegratingGenetic and Genomic KnowledgeThe registered nurse:
• Demonstrates an understanding of the relationship ofgenetics and genomics to health, prevention, screening,diagnostics, prognostics, selection of treatment, and moni-toring of treatment effectiveness.
• Demonstrates ability to elicit a minimum of three-genera-tion family health history information.
Essential Competencies 11
• Constructs a pedigree from collected family history informa-tion using standardized symbols and terminology.
• Collects personal, health, and developmental histories thatconsider genetic, environmental, and genomic influencesand risks.
• Conducts comprehensive health and physical assessmentswhich incorporate knowledge about genetic, environmental,and genomic influences and risk factors.
• Critically analyzes the history and physical assessment find-ings for genetic, environmental, and genomic influences andrisk factors.
• Assesses clients’ knowledge, perceptions, and responses togenetic and genomic information.
• Develops a plan of care that incorporates genetic andgenomic assessment information.
IdentificationThe registered nurse:
• Identifies clients who may benefit from specific genetic andgenomic information and/or services based on assessmentdata.
• Identifies credible, accurate, appropriate, and current geneticand genomic information, resources, services, and/or tech-nologies specific to given clients.
• Identifies ethical, ethnic/ancestral, cultural, religious, legal,fiscal, and societal issues related to genetic and genomicinformation and technologies.
• Defines issues that undermine the rights of all clients forautonomous, informed genetic- and genomic-related deci-sion-making and voluntary action.
Referral ActivitiesThe registered nurse:
• Facilitates referrals for specialized genetic and genomic serv-ices for clients as needed.
12 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Provision of Education, Care, and SupportThe registered nurse:
• Provides clients with interpretation of selective genetic andgenomic information or services.
• Provides clients with credible, accurate, appropriate, and cur-rent genetic and genomic information, resources, services,and/or technologies that facilitate decision-making.
• Uses health promotion/disease prevention practices that:
• Consider genetic and genomic influences on personal and environmental risk factors.
• Incorporate knowledge of genetic and/or genomic risk factors (e.g., a client with a genetic predisposition for high cholesterol who 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 infor-mation to improve clients’ outcomes.
• Collaborates with healthcare providers in providing geneticand genomic health care.
• Collaborates with insurance providers/payers to facilitatereimbursement for genetic and genomic healthcare services.
• Performs interventions/treatments appropriate to clients’genetic and genomic healthcare needs.
• Evaluates impact and effectiveness of genetic and genomictechnology, information, interventions, and treatments onclients’ outcome.
Essential Competencies 13
14
IMPLEMENTATION STRATEGIES
Practice and curriculum change requires the commitment of nursingleaders and academic faculty to develop a long-term plan to incorpo-rate genetic and genomic information in order to improve the public’shealth. Faculty and practicing nurses must be supported by their insti-tutions to attend continuing education or academic courses to updatetheir genetic and genomic knowledge. Collaboration with other disci-plines is necessary to provide a strong foundation of knowledge ofbasic human genetics and current applications to practice.
Key StrategiesSome strategies to implement the competencies specified in this doc-ument are described briefly below.
• NCLEX – Participate in the NCLEX test development processto ensure inclusion of test items addressing genetic andgenomic knowledge. Continue to include and participate indevelopment of test items assessing integration of geneticand genomic knowledge. Work with the American HospitalAssociation and other regulatory agencies and organiza-tions to incorporate genetics and genomics practice con-tent on assessments of quality which will also influenceNCLEX content.
• Certification – All certification exams should include testitems measuring the knowledge of genetic and genomicinformation pertinent to the specialty for which a registerednurse is being certified.
• Practicing Nurses – Practicing nurses should be encouragedto pursue genetic and genomic continuing education.Consider establishing a United States National GeneticsEducation and Development Center modeled after theUnited Kingdom initiative which can serve as the centralresource for genetics and genomic education initiatives. Seehttp://www.geneticseducation.nhs.uk
• Accreditation of Programs – The standards for accreditationshould evaluate whether the curriculum is designed to meetthe essential core genetic and genomic competencies. Seehttp://www.nlnac.org/home.htm for the most recent editionof the National League for Nursing Accrediting Commission’saccreditation manual for these standards.
Implementation Strategies 15
• Curricula – Each nursing curriculum preparing registerednurses for practice (at any and all levels) should includegenetic and genomic learning experiences sufficient for allregistered nurses to be proficient in the essential competen-cies. This can be accomplished by incorporating geneticsand genomics learning experiences into existing classes.Refer to Appendix A for resources useful to faculty.
Incorporation of Competencies, Content, andTeaching Strategies into the CurriculumToday’s nursing curriculum is dense, and integrating new informationis a challenge. Since genetic and genomic information is integral andcritical to all areas of nursing practice, curricula must prepare gradu-ates with this information.16 Nursing faculty from 171 nursing schoolscontributed to the development of a checklist which was created tohelp faculty integrate genetics content into nursing curricula.17 Animportant initial strategy noted in the checklist is to determine whatcontent is already being taught in pre-nursing and nursing courses.Once content gaps are identified, many curriculum change strategiescan be used to add genetic and genomic content to instructionalresources.18 Potential solutions include incorporating genetics andgenomics as a central science including the following:
• Add genetic and genomic content to existing lectures;
• Integrate assignments and test questions incorporatinggenetic and genomic knowledge into existing courses;
• Include genetic- and genomic-focused objectives in allnursing courses;
• Create a curriculum thread focused on genetics andgenomics;
• Develop an elective genetics and genomics nursing coursethat can be transitioned into a required course; and
• Collaborate with interdisciplinary colleagues to designcourses and curricula.
Outcomes associated with some of the curriculum options listedabove have already been published.19 A theory-based approach tointegrating genetics into one school’s nursing curriculum is welldescribed by Horner et al.20 Integrative approaches in associate andbaccalaureate programs have been published by Danz (2004),Zamerowski (2000), and Read et al. (2004).21, 22, 23
16 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Development of a single genetic and genomic nursing courseincorporated into the curriculum has also been described.24 The abilityof faculty to effectively incorporate genetics and genomics contentinto the nursing curricula hinges on the availability of faculty witheducation or expertise in genetics and genomics.25 Outcomes associat-ed with faculty training initiatives addressing this need (includingsummer institutes and a web-based program26, 27, 28) have also beendescribed.
Implementation Strategies 17
18
REFERENCES CITED IN TEXT
All URLs were accessed and confirmed in July 2006.
1. Expert Panel Report on Genetics and Nursing. (2000).Implications for Education and Practice. Washington, DC.BHP00177. Available from: http://ask.hrsa.gov/ProfessionalPublications.cfm?start=72 HRS00296 HRSAPublication Catalog.
2. Guttmacher, A. and Collins, F. (2002). Genomic medicine: Aprimer. NEJM 347:1512–20.
3. Bennett, R. L., Steinhaus, K. A., Uhrich, S. B., O’Sullivan, C. K.,Resta, R. G., Locher-Doyle, D., Markel, D. S., Vincent, V., andHamanishi, J. (1995). Recommendations for standardizedhuman pedigree nomenclature. American Journal of HumanGenetics 56:745–52.
4. Centers for Disease Control and Prevention (CDC). (2001).Genomic Competencies for all Public Health Professionals[online]. Available: http://www.cdc.gov/genomics/training/competencies/comps.htm
5. International Society of Nurses in Genetics. (1998).Statement on the Scope and Standards of Genetics ClinicalNursing Practice. Washington, DC: American NursesAssociation. Available from: 1-770-442-8633, ext. 295; [online]http://www.isong.org/support/scope.cfm
6. International Society of Nurses in Genetics and AmericanNurses Association. (In press, 2006). Genetics/GenomicsNursing: Scope and Standards of Practice. Silver Spring, MD.:Nursesbooks.org.
7. Jenkins, J. F., Dimond, E., and Steinberg, S. (2001). Preparingfor the future through genetics nursing education. Journal ofNursing Scholarship 33(2):191–95.
8. Jenkins, J. F., Prows, C., Dimond, E., Monsen, R., and Williams, J.(2001). Recommendations for educating nurses in genetics.Journal of Professional Nursing 17(6):283–90.
9. National Coalition for Health Professional Education inGenetics (NCHPEG). (2000). Core Competencies in GeneticsEssential for all Health-care Professionals. Available athttp://www.nchpeg.org/
References Cited in Text 19
10. American Association of Colleges of Nursing. (1996). TheEssentials of Master’s Education for Advanced Practice Nursing.Washington, DC.
11. American Association of Colleges of Nursing. (1998). TheEssentials of Baccalaureate Education for ProfessionalEducation. Washington, DC.
12. American Association of Colleges of Nursing. (2001).Indicators of Quality in Research-focused Doctoral Programs inNursing. Washington, DC.
13. Greco, K. E. and Salveson, C. (In review process) An evidence-based qualitative analysis identifying fundamental under-graduate nursing competencies in genetics. (Submitted toJournal of Nursing Education for publication.)
14. Kirk, M., McDonald, K., Longley, M., and Anstey, S. et al. (2003).Fit for Practice in the Genetics Era: A Competence-basedEducation Framework for Nurses, Midwives and Health Visitors -Final Report. Pontypridd: University of Glamorgan.(http://www.glam.ac.uk/socs/research/gpu/FinalReport.pdf )
15. American Nurses Association. (2004). Nursing: Scope andStandards of Practice. Nursesbooks.org: Washington, DC.
16. Williams, J. K. (2002). Education for genetics and nursingpractice. AACN Clinical Issues: Current Issues in Genetics13(4):492–500.
17. Hetteberg, C. and Prows, C. A. (2004). A checklist to assist inthe integration of genetics into nursing curricula. NursingOutlook 52(2):85–88.
18. Williams, J. K., Tripp-Reimer, T., Schutte, D., and Barnette, J. J.(2004). Advancing genetic nursing knowledge. NursingOutlook 52(2):73–79.
19. Lea, D. H. and Monson, R. B. (2003). Preparing nurses for a 21stcentury role in genomics-based health care. NursingEducation Perspectives 24(2):75–80.
20. Horner, S. D., Abel, E., Taylor, K., and Sands, D. (2004). Usingtheory to guide the diffusion of genetics content in nursingcurricula. Nursing Outlook 52(2):80–84.
20 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
21. Danz, S. (2004). Integrating Genetics Content in NursingEducation at Delaware Technical and Community College,Jack F. Owens Campus. Doctoral dissertation, University ofDelaware, 2004.
22. Zamerowski, S. T. (2000). A model for integrating geneticsinto nursing education. Nursing Health Care Perspectives21(6):298–304.
23. Read, C.Y., Dylis, A. M., Mott, S. R., and Fairchild, N. J. (2004).Promoting integration of genetics core competencies intoentry-level nursing curricula. Journal of Nursing Education43(8):376–80.
24. Horner, S. D. (2004). A genetics course for advanced clinicalnursing practice. Clinical Nurse Specialist 18(4):194–99.
25. Prows, C. A., Glass, M., Nicol, M. J., Skirton, H., and Williams, J.(2005). Genomics in nursing education. Journal of NursingScholarship 37(3):196–202.
26. Whitt, K. J. (2005). Experiences from the National Institute ofNursing Research: Summer Genetics Institute 2004. Policy,Politics, and Nursing Practice 6(1):15–16.
27. Prows, C. A., Hetteberg, C., Johnson, N., Latta, K., Lovell, A.,Saal, H. M., and Warren, N. S. (2003). Outcomes of a geneticseducation program for nursing faculty. Nursing EducationPerspectives 24(2):81–85.
28. Prows, C. A., Hetteberg, C., Hopkin, R. J., Latta, K. K., andPowers, S. M. (2004). Development of a web-based geneticsinstitute for a nursing audience. Journal of ContinuingEducation in Nursing 35(5):223–31.
References Cited in Text 21
22
APPENDIX A
RESOURCES TO SUPPORT THE GENETICS
AND GENOMICS COMPETENCIES
This appendix brings together the following categories of availableresources that are pertinent to the fundamental genetic and genomiccompetencies for RNs specified in this publication.
Books and Monographs
Career Development: Continuing Education
Career Development: Post-Graduate Programs
Clinical Genetics
Consumer/Client: General Information
Consumer/Client: Support and Advocacy Groups
ELSI (Ethical, Legal, and Social Implications), Policy, and Legislation
Family History Tools
Genome Research
Health Professional Practice and Education
Internal Review Boards (IRBs)
News Sites Specializing in Genetics and Genomics
Professional Organizations: Genetics
Professional Organizations: Nursing Practice
Risk Assessment
Search Engines Specializing in Genetics and Genomics
United States Government Agencies
All online resources were current as of July 10, 2006. Listing of a bookin this appendix does not indicate that it is still in print.
Appendix A Resources to Support Genetics and Genomics Competencies 23
Books and Monographs
24 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
ResourceClinical Genetics inNursing Practice, 3rd ed.(2005)By Felissa R. Lashley
Genetics in Nursing(2004)Editors: SuzanneFeetham and JanetWilliams
Genetics in OncologyPractice: Cancer RiskAssessment (2003)Editors Amy StraussTranin, Agnes Masny, andJean Jenkins
The Genetics Revolution:Implications for Nurses(1997)Editor: Felissa Lashley
Applied Genetics inHealthcare (2005)By Heather Skirton,Christine Patch, andJanet Williams
PublisherSpringer PublishingCompany, Inc.
International Council ofNurseshttp://www.icn.ch/bookshop.htm
Oncology NursingSociety Press
American Academy ofNursing
BIOS Scientific Publishers(New York; Abingdon[England]: Taylor andFrancis Group)
DescriptionNursing and genetics text
Monograph to providedirection for nursing lead-ership in genetics in glob-al, scientific, practice, edu-cation, social, information,ethical and politicalcontexts.
A detailed overview ofgenetics and the implica-tions for cancer nursingpractice.
The first nursing mono-graph to be published onthe profession's responsesto the opportunities andchallenges of the HumanGenome Project and theadvances in gene research.
Test for application ofgenetic and genomicprinciples by nurses whoprovide genetic andgenomic health care asspecialist practitionersand advanced practicenurses
Appendix A Resources to Support Genetics and Genomics Competencies 25
Nursing Care in theGenomic Era: A Case-Based Approach (2005)By Jean F. Jenkins andDale Halsey Lea
Genetics in ClinicalPractice: New Directionsfor Nursing and HealthCare (1998)By Dale Halsey Lea, JeanF. Jenkins, and Clair A.Francomano
Genetic NursingPortfolios: A New Modelfor the Profession (2005)Editor: Rita BlackMonson
Statement on the Scopeand Standards ofGenetics Clinical NursingPractice (1998)By International Societyof Nurses in Genetics, Inc.
Genetics and thePerinatal and Women’sHealth Nurse (2001)By Judith Lewis
Jones and BartlettPublishers
Jones and BartlettPublishers
American NursesAssociation(Nursebooks.org)
American NursesAssociation and ISONG(Nursesbooks.org)
Association of Women'sHealth, Obstetric andNeonatal Nurses(AWHONN)
Provides nurses with up-to-date and accessibleinformation on core com-petencies in genetics,interwoven with storiesthat highlight a particularcondition and the relatedbiological, personal, andpsychosocial issues.
Provides a unique, under-standable approach tothe emerging science ofgenetics.
Describes the develop-ment of the GNCC cre-dentialing program. Thebook shows how toassemble and use a port-folio to verify competen-cy in a specialty.
Scope and standards of practice for nurses in genetics(A new edition has beenpublished in 2006 asGenetics/GenomicsNursing: Scope andStandards of Practice.)
This practice monographprovides nurses with thebasic information theyneed to provide patientswith accurate informa-tion about geneticscreening and testing.
26 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Genetic Issues forPerinatal Nurses (2003)By Janet Williams andDale Halsey LeaEditor: Rita ReisWieczorek
The Nursing Clinics ofNorth America: ClinicalGenetics (2000). Editors:Sharon Olsen, LynnBaxendale-Cox, andVictoria Mock
Cancer Care: A Guide forOncology Nurses (2002)By Dale Halsey Lea,Kathleen Calzone, AgnesMasny, and AnnetteParry Bush
March of Dimes BirthDefects FoundationEducation ServicesDepartment
W.B. Saunders Company
Oncology NursingSociety Press
A nursing continuingeducation program thatpresents an update ofgenetics, principles ofinheritance and ethicalprinciples. Provides infor-mation on identificationof actual or potentialgenetic conditions in thefetus, parent, or neonate.
The basics of geneticsand genetic health carefor the practice of everynurse and specialist.
A tool kit to assist thenurse in becoming com-petent in cancer genetics.
Appendix A Resources to Support Genetics and Genomics Competencies 27
Career Development: Continuing Education
ResourceAmerican Society ofClinical Oncology
Cincinnati Children’sHospital Medical Center
City of Hope NationalMedical Center andBeckman ResearchInstitute
Foundation for BloodResearch
Fox Chase Cancer Center
ContactASCO Bookstore1900 Duke Street,Suite 200Alexandria, VA 22314(703) 299-0150http://www.asco.org
3333 Burnet AvenueCincinnati, Ohio 45229-3039(513) 636-4200http://www.cincinnatichildrens.org/ed/clinical/gpnf
1500 E. Duarte Road Duarte, CA 91010-3000 (800) 423-7119 http://cityofhope.org/CME/cmemainpg.htm
8 Nonesuch RoadP.O. Box 190Scarborough ME 04070-0190(207) 883-4131http://www.fbr.org/publications/pub_curic.html
333 Cottman AvenuePhiladelphia, PA 19111-2497(215) 728-2892 or 1-888-369-2427http://www.fccc.edu/nursing/education/
DescriptionCancer Genetics andCancer PredispositionGenetic Testing, 2ndEdition: An ASCOCurriculum, includingbinders and CD-ROMslide set.ONCOSEP: Genetics: Atool for self-educationand assessment in genet-ic testing, risk assess-ment, and specific areasof genetic disease.
Genetics EducationProgram for Nurses: Web-Based Genetics Instituteand Genetics Program forNursing Faculty
Intensive Course inCancer Risk Assessment
Practice-based GeneticsCurriculum For NurseEducators (sample chap-ter available online)
A Basic Course in CancerGenetics: Familial CancerRisk AssessmentAn Advanced Course forNurses in Genetic CancerRisk Counseling
28 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
International Society ofNurses in Genetics, Inc.(ISONG)
National Institute ofNursing Research (NINR)
Oncology NursingSociety (ONS)
461 Cochran Road Box 246 Pittsburgh, PA 15228 412-344-1414 E-mail:[email protected]://www.isong.org/events/conference.cfmand http://www.isong.org/ support/scope.cfm
Summer GeneticsInstituteDivision of IntramuralResearchNational Institute ofNursing ResearchNational Institutes ofHealth31 Center Drive, 5B-13Bethesda, MD 20892-2178(202) 255-6922http://ninr.nih.gov/ninr/research/dir/sgi.html
125 Enterprise DriveRIDC Park WestPittsburgh, PA 15275-1214(866) 257-4ONSEmail: [email protected]://www.ons.org/ceCentral/prevention/
Annual Nursing andGenetic EducationMeeting
Statement on the Scopeand Standards ofGenetics Clinical NursingPractice
Summer GeneticsInstitute programdesigned to providetraining in moleculargenetics for use inresearch and clinicalpractice
Genetics Short Course forCancer Nurses
Appendix A Resources to Support Genetics and Genomics Competencies 29
Career Development: Post-Graduate Programs
OrganizationColumbia University
University of Iowa
University of Pittsburgh
ContactColumbia UniversitySchool of Nursing617 West 168th StreetNew York, NY 10032(212) 305-6761http://www.cumc.columbia.edu/dept/nursing/programs/cg.html
University of IowaCollege of Nursing50 Newton Rd.Iowa City, IA 52242(319)335-7046 or 335-7018Attention: Janet Williams,PhD, RNhttp://www.nursing.uiowa.edu/academprog/msn/geneticsindex.htm
University of PittsburghSchool of Nursing239 Victoria BuildingPittsburgh, PA 15261(412) 624-4586 or 1-888-747-0794http://www.pitt.edu/~nursing/academicprograms/certificates/post_bacc_ genetics.htmland http:// www.pitt.edu/~nursing/ academicprograms/certificates/post_masters _cert_genetics.html
Program/ResourcesMaster’s degree pro-gram with a clinicalgenetics sub-specialty
Master’s and PhD degreeprograms in GeneticsNursing
Post-BaccalaureateCertificate in Genetics
Post-Master’s Certificatein Health Care Genetics
30 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
University of California,San Francisco
University ofWashington
University of California,San FranciscoDepartment ofPhysiological Nursing2 Koret Way, Suite N-631San Francisco, CA 94143-0610(415) 476-0984Attention: Mary B. Engler,PhD, RN, MShttp://nurseweb.ucsf.edu/www/genomic.htm
University of WashingtonSchool of NursingBox 357260Seattle, WA 98195(206) 221-2458http://www.son.washington.edu/eo/apgn
Master’s and doctoraldegree programs inGenomics
Master’s degree pro-gram with a minor ingenetics nursing(advanced practicegenetics nursing)
Appendix A Resources to Support Genetics and Genomics Competencies 31
Clinical Genetics
ResourceGeneTests
Human GenomeEpidemiology Network(HuGENet™)
INFOGENETICS©
National Birth DefectsPrevention Network
National NewbornScreening & GeneticsResource Center
Online MendelianInheritance in Man(OMIM™)
Contacthttp://www.genetests.org/
http://www.cdc.gov/genomics/hugenet/default. htm
http://www.infogenetics.org/
http://www.nbdpn.org
http://genes-r-us.uthscsa.edu/
http://www.ncbi.nlm.nih.gov/Omim/
DescriptionInformation for healthprofessionals about hun-dreds of genetic testsand the laboratories per-forming those tests
Network for sharingpopulation-basedhuman genome epi-demiologic information
Clinical practice tools
Network of resources forsurveillance, research,and prevention of birthdefects care
Information andresources nationallyavailable on newbornscreening and genetics
Catalog of human genesand genetic disorders
32 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Consumer/Client: General Information
ResourceBuilding andUnderstanding YourMedical Family History
The DNA Files
Dolan DNA LearningCenter
Ethics and GeneticTesting for Nurses
Foundations of ClassicalGenetics
Generational Health
Genetic Science LearningCenter
Genetics and RareDiseases InformationCenter
Contacthttp://jamesline.com/patientsandvisitors/prevention/cancergenetics/
http://www.dnafiles.org/
http://vector.cshl.org/
http://www.nursing.uiowa.edu/areas/parentchild/cdrom.htm
http://www.esp.org/foundations/genetics/classical
http://209.61.158.31:8287/
http://gslc.genetics.utah.edu/
http://www.genome.gov/10000409
DescriptionInformation on collect-ing family health historyand assessing cancer risk
A series of 14 one-hourpublic radio documen-taries and related infor-mation (10 more tocome out in 2006)
A variety of educationalresources, including aninteractive DNA timeline
CD-ROM modules onethics, ethics of genetictesting, and case studies
Complete versions ofclassic genetics workswritten between 350B.C. and 1965
Tool to help trace a fami-ly's medical history andprovide information oncommon diseases
Basic genetics, geneticdisorders, genetics insociety, and several the-matic units
Information service forthe general public,including patients andtheir families, as well ashealthcare professionalsand biomedicalresearchers
Appendix A Resources to Support Genetics and Genomics Competencies 33
Genetics EducationCenter
Genetics HomeReference—NationalLibrary of Medicine
The Human GenomeProject: Exploring OurMolecular Selves
MendelWeb
National Society ofGenetic Counselors—Your Family History
The New Genetics: AResource for Studentsand Teachers
Understanding GeneTesting (from theNational CancerInstitute, NIH)
http://www.kumc.edu/gec/
http://ghr.nlm.nih.gov/
http://www.genome.gov/Pages/EducationKit/
http://www.mendelweb.org/
http://www.nsgc.org/consumer/familytree/index.cfm
http://www4.umdnj.edu/camlbweb/teachgen.html
http://www.cancer.gov/cancertopics/UnderstandingCancer/genetesting
Material for educators
Consumer informationabout genetic condi-tions and the genesresponsible for thoseconditions
Download modules andonline viewing aboutHuman Genome Project,timeline about genetics,talking glossary, class-room activities, 3-D ani-mation of cell
Mendel's papers inEnglish (with annota-tions) and German andrelated materials
Information on collect-ing family health history
Links to genetic educa-tion resources
Primer on genetic testing
34 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Consumer/Client: Support and Advocacy Groups
ResourceCoalition for GeneticFairness
Family Village
Genetic Alliance
National Organization forRare Disorders(NORD)
Contacthttp://www.geneticfairness.org/
http://www.familyvillage.wisc.edu/index.htmlx
http://www.geneticalliance.org/
http://www.rarediseases.org/
DescriptionAdvocacy group for fed-eral legislation regardinggenetics discrimination
Disability-relatedresources
Wide array of genetic-related information
Rare diseases databaseand index of organiza-tions
Appendix A Resources to Support Genetics and Genomics Competencies 35
ELSI (Ethical, Legal, and Social Implications),Policy, and LegislationResourceAmerican Academy ofPediatrics: Ethical IssuesWith Genetic Testing inPediatrics
Bioethics Resources onthe Web(NIH)
bioethics.net
Council for ResponsibleGenetics
DNA Patent Database
Ethical, Legal, and SocialIssues (from the HumanGenome Project)
Foundation for GeneticMedicine, Inc.
Genethics.ca
Contacthttp://aappolicy.aappublications.org/and enter the article title in the Title search window.
http://www.nih.gov/sigs/bioethics/
http://www.bioethics.net
http://www.genewatch.org/
http://dnapatents.georgetown.edu
http://www.ornl.gov/hgmis/elsi/elsi.html
http://www.genome.gov/10001754
http://www.geneticmedicine.org/
DescriptionRecommendations onnewborn screening and genetic testing in children
Links to bioethicsresources
Links to articles onbioethics and genetics
Information on thesocial, ethical, and envi-ronmental implicationsof genetic technologies
Searchable database ofU.S. DNA-based patentsissued by the U.S. Patentand Trademark Office
Information, articles, andlinks on a wide range ofissues
Links to information onthe science of geneticmedicine, genetic andgenomic research, andethical, legal, and socialdimensions and implications
Information on thesocial, ethical, and policyissues associated withgenetic and genomicknowledge and technology
36 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Genetics and the Law(from CRG—Council forResponsible Genetics)
The Genetics and PublicPolicy Center
Genome Technologyand Reproduction:Values and Public Policyand The Communities ofColor and GeneticsPolicy Project
HumGen
National InformationResource on Ethics and Human Genetics
NCSL (NationalConference of StateLegislatures) GeneticTechnologies Project
The President's Councilon Bioethics
http://www.genethics.ca/index.html
http://www.genelaw.info/
http://www.sph.umich.edu/genpolicy/
http://www.humgen.umontreal.ca/en/
http://www.georgetown.edu/research/nrcbl/nirehg/index.htm
http://www.ncsl.org/programs/health/genetics. htm
http://www.bioethics.gov/
A searchable onlineclearinghouse of infor-mation on emerginglegal developments inhuman genetics
Information on publicpolicy related to humangenetic technologies forthe public, media, andpolicymakers
Two subprojects com-bined to form a five-yearproject designed to pro-vide policy recommen-dations based on publicperceptions andresponses to the explo-sion of genetic informa-tion and technology.
Access to a comprehen-sive international data-base on the legal, social,and ethical aspects ofhuman genetics
Links to resources anddatabases on ethics andhuman genetics
Status of legislativeactions and access topolicy briefs on geneticissues of concern tostate legislators
Information on currentbioethical issues
Appendix A Resources to Support Genetics and Genomics Competencies 37
Scope Note Series(Kennedy Institute ofEthics/ GeorgetownUniversity)
THOMAS LegislativeInformation (fromLibrary of Congress)
Your Genes, Your Choices
http://www.georgetown.edu/research/nrcbl/nirehg/scope.htm
http://thomas.loc.gov/
http://ehrweb.aaas.org/ehr/books/index.html
Annotated bibliogra-phies on various aspectsof genetics and ethics
Searchable database ofU.S. legislation (currentand previous)
Describes the HumanGenome Project, the science behind it, andthe ethical, legal, andsocial issues that areraised by the project
38 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Family History ToolsResourceAmerican MedicalAssociation: FamilyHistory Tools
Cyrillic
Pedigree-Draw
Progeny
U.S. Surgeon General’sFamily History Initiative:“My Family HealthPortrait”
Contacthttp://www.ama-assn.org/ama/pub/category/2380.html
http://www.cyrillicsoftware.com
http://www.pedigree-draw. com
http://www.progeny2000.com
http://www.hhs.gov/familyhistory/
DescriptionTools for gathering family history and linksto resources
Pedigree drawing software for geneticcounselors and clinicians;links to genetic sites
Pedigree drawing soft-ware for Macintosh
Genetic data manage-ment and pedigreedrawing software
Patient-completed pedigree drawing software
Appendix A Resources to Support Genetics and Genomics Competencies 39
Genome ResearchResourceBLAST Search (part ofEnsembl; see below)
The Cancer GenomeAnatomy Project
Chromosomal Variationin Man
Ensembl (Joint software projectbetween the EuropeanBioinformatics Instituteand the Sanger Institute)
Genome SequencingCenter: Human genomemaps
National Center forBiotechnologyInformation: GenomicBiology
Oak Ridge GenomeChannel
Online MendelianInheritance in Man(OMIM™)
The SNP (SingleNucleotidePolymorphisms)Consortium
Contacthttp://www.ensembl.org/Data/blast.html
http://cgap.nci.nih.gov
http://www.wiley.com/legacy/products/subject/life/borgaonkar/
http://www.ensembl.org
http://genome.wustl.edu/
http://www.ncbi.nlm.nih.gov/genome/guide/
http://compbio.ornl.gov/channel/
http://www.ncbi.nlm.nih.gov/Omim/
http://snp.cshl.org/
DescriptionProvides data sets froman annotated genomeanalysis and annotationprocess; searches of pro-tein or DNA sequenceagainst metazoangenomes
Access to all CGAP dataand biological resources
A catalog of chromoso-mal variants and anom-alies
Access to DNA and pro-tein sequences withautomatic baselineannotation
Links to clone and acces-sion maps of the humangenome
Views of chromosomes,maps, and loci; links toother NCBI resources
Java viewers for humangenome data
Catalog of human genesand genetic disorders
A variety of ways toquery for SNPs in thehuman genome
40 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
UCSC GenomeBioinformatics
http://genome.cse.ucsc.edu/
Reference sequence forthe human and C. ele-gans genomes andworking drafts for themouse, rat, Fugu,Drosophila, C. briggsae,yeast, and SARSgenomes
Appendix A Resources to Support Genetics and Genomics Competencies 41
Health Professional Practice and EducationResourceCentre for Education inMedical Genetics
Centre for GeneticsEducation
Dolan DNA LearningCenter
Foundation for GeneticEducation andCounseling
GenEd Project
Genetics and YourPractice
Genetics in ClinicalPractice: A TeamApproach
Contacthttp://www.bwhct.nhs.uk/genetics-cemg-home.htm
http://www.genetics.com.au/
http://www.dnalc.org/
http://www.fgec.org
http://www.medicine.man.ac.uk/GenEd/
http://www.marchofdimes.com/gyponline/index.bm2
http://iml.dartmouth.edu/education/cme/Genetics/orhttp://www.acmg.net/resources/cd-rom-01/intro.asp
DescriptionDevelops, provides, andevaluates genetics edu-cation opportunities andresources
Education and serviceresources for patientsand professionals
Interactive, multimediagenetics educationresources
Educational resourceson genetics and com-mon diseases, especiallypsychiatric disorders(bipolar disorder andschizophrenia)
Education and researchlinks related to Europeanaspects of genetic services
Online modules forhealthcare professionalsdesigned for explorationof a topic rather thansequential presentationof material... Manyexcellent fact sheets andsample clinical forms
Takes healthcareprovider into a VirtualGenetics Clinic...Interactive virtualgenetics clinic withcase scenarios and casediscussions... Targetaudience is primarycare professionals
42 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Genetics in Primary Care
Genetics in Psychology
Genetics EducationProgram for Nurses(GEPN) curriculumresources
Genetics: EducationalInformation
Kansas GeneticsEducation Center
National CancerInstitute’s CancerNet
National Coalition forHealth ProfessionalEducation in Genetics(NCHPEG)
http://genes-r-us.uthscsa.edu/resources/genetics/primary_care.htm
http://www.apa.org/science/genetics/homepage.html
www.gepn.cchmc.orgorhttp://www.cincinnatichildrens.org/ed/clinical/gpnf/default.htm
http://genetics.faseb.org/genetics/ashg/policy/rep-01.htm
http://www.kumc.edu/gec/
http://www.cancer.gov/cancerinfo/prevention-genetics-causes
http://www.nchpeg.org/
Training program cur-riculum materials
American PsychologicalAssociation's geneticssite
Sample genetics nursingcourse syllabi and othergenetics educationalopportunities andresources for nurses, aswell as links to instruc-tional resources used inGSI (Genetics SummerInstitute) and WBGI(Web-based GeneticInstitute)
Medical school coursecompetencies, skills,knowledge, and behav-iors which should becovered in genetics
An ever-growing list ofavailable resources, les-son plans, etc.
Authoritative informa-tion about cancergenetics
Core competencies ingenetics and reviews ofeducation programs...Descriptions of availableinstructional resources,courses, institutes... Allhave been submitted bydevelopers and somehave accompanyingpeer reviews
Appendix A Resources to Support Genetics and Genomics Competencies 43
Physician’s DatabaseQuery (PDQ®) CancerInformation Summaries
Practice-Based GeneticsCurricula for NurseEducators
Six Weeks to GenomicAwareness
http://www.cancer.gov/cancerinfo/pdq/genetics
http://www.fbr.org/publications/pub_curic.html
http://www.cdc.gov/genomics/training/sixwks.htm
PDQ® cancer informa-tion summaries ingenetics
Bound instructionalmodules with accompa-nying CD or PowerPointpresentations (samplechapter available online)
Webcast of 12 segmentsof genomic topicsfor public healthprofessionals
44 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Institutional Review Boards (IRBs)ResourceGenetic Testing andScreening in the Age ofGenomic Medicine. NewYork State Task Force onLife and Law (2001)
Human SubjectsProtection ResourceBook. U.S. Departmentof Energy (2006)
My Very Own Medicine:What Must I know?Information Policy forPharmacogenetics. PublicHealth Genetics Unit,National Health Service,UK - D. Melzer et al.(2003)
Protecting HumanResearch SubjectsInstitutional Review BoardGuidebook, Chapter H:Human Genetic Research.Office for HumanResearch Protections(1993)
Pharmacogenetics: EthicalIssues. Nuffield Councilon Bioethics (2003)
Contacthttp://www.health.state.ny.us/nysdoh/taskfce/screening.htm
http://www.science.doe.gov/ober/humsubj/resourcebook.html
http://www.phgu.org.uk/pages/work/pgx.html
http://www.hhs.gov/ohrp/irb/irb_chapter5ii.htm#h12
http://www.nuffieldbioethics.org/go/ourwork/pharmacogenetics/publication_314.html
DescriptionIncludes general andstate-specific informa-tion in a bulleted reportthat is relatively easy toscan by topic
Synthesizes the currentinformation on protect-ing human researchsubjects, its applicationto new fields, and theunderlying rules, regula-tions, and guidance...Includes chapters spe-cific to given types ofresearch (includinggenetics and gene ther-apy) and specificresearch populations
General information andbackground, lookingahead to future needs,including guidance forIRBs
Discusses many issuesthat continue to chal-lenge IRBs and investiga-tors (and policymakers)today
Includes a section dis-cussing the use of phar-macogenetics in clinicaltrials
Appendix A Resources to Support Genetics and Genomics Competencies 45
News Sites Specializing in Genetics and GenomicsResourceGenetics and MolecularMedicine (AmericanMedical Association)
Genome News Network(Center for theAdvancement ofGenomics)
Science News Presentedby BIO, theBiotechnology IndustryOrganization
Contacthttp://www.ama-assn.org/ama/pub/category/1799.html
http://www.genomenewsnetwork.org/
http://science.bio.org/genomics.news.html
DescriptionLinks to current articles,new educational pro-grams and initiatives,and other resources
Original articles andlinks
Links to current articles
46 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Professional Organizations: GeneticsResourceAmerican Board ofGenetic Counseling(ABGC)
American Board ofMedical Genetics (ABMG)
American College ofMedical Genetics(ACMG)
American Society forHuman Genetics (ASHG)
Genetics NursingCredentialingCommission (GNCC)
Genetics Society ofAmerica (GSA)
International Society ofNurses in Genetics(ISONG)
National Society ofGenetic Counselors(NSGC)
Society for the Study ofInborn Errors ofMetabolism (SSIEM)
Contacthttp://www.faseb.org/genetics/abgc/abgcmenu.htm
http://www.faseb.org/genetics/abmg/abmgmenu.htm
http://www.acmg.net/
http://www.ashg.org/
http://www.geneticnurse.org
http://www.faseb.org/genetics/gsa/gsamenu.htm
http://www.isong.org/
http://www.nsgc.org/
http://www.ssiem.org/
DescriptionInformation about certifi-cation of genetic coun-selors
Information about med-ical genetic training pro-grams and certification ofgeneticists
Resources, policy state-ments, and practiceguidelines about medicalgenetics
Resources, projects, andpolicies concerninghuman genetics
Information about cre-dentialing of geneticsnurses
Links to teaching web-sites, general educationalcourses, and journals andpublications aboutgenetics
Resources to help nursesincorporate new knowl-edge about humangenetics into practice,education, and research
Information about genet-ic counseling: practiceguidelines, links to genet-ic counselors, genetic dis-crimination resources
Links to websites andresources about inheritedmetabolic disorders
Appendix A Resources to Support Genetics and Genomics Competencies 47
Professional Organizations: Nursing PracticeOrganizationAmerican NursesAssociation
American Society ofClinical Oncology
Association of Women’sHealth, Obstetric andNeonatal Nurses
International Society ofNurses in Genetics, Inc.(ISONG)
National Coalition forHealth ProfessionalEducation in Genetics (NCHPEG)
Contacthttp://www.nursingworld.org
http://www.asco.org
http://www.awhonn.org
http://www.isong.org/support/scope.cfm *and http://www.isong.org/about/position.cfm
(* The currency of thisStatement document willbe superseded by theend of 2006 with anupdated and expandeddocument on the scopeand standards of geneticand genomic nursingpractice.)
http://www.nchpeg.org
DescriptionCode of Ethics for NursesPolicy statements on:• Genetics and nursing• Cloning and therapeutic
and reproductiveapplication of genetics
• Human cloning: humanrights, discriminationsand privacy andconfidentiality
Policy statement updateGenetic testing for cancersusceptibility
Position statement on therole of the registerednurse as related togenetic testing
Statement on the scopeand standards of geneticsclinical nursing practice.Policy statements on theroles of nurses and/ornursing in:• Access to genomic
health care• Privacy and confiden-
tiality of geneticinformation
• Genetic counseling forvulnerable populations
• Informed decision-making and consent
Recommendations ofcore competencies ingenetics for all healthprofessionals
48 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Oncology NursingSociety
http://www.ons.org/publications/positions/
Position statements on:• The role of the oncol-
ogy nurse in cancergenetic counseling
• Cancer predispositiongenetic testing andrisk assessment coun-seling
Appendix A Resources to Support Genetics and Genomics Competencies 49
Risk AssessmentResourceHarvard Center forCancer Prevention: YourDisease Risk
National Cancer Institute:Breast Cancer RiskAssessment Tool
Contacthttp://www.yourcancerrisk.harvard.edu/
http://bcra.nci.nih.gov/brc/
DescriptionPersonalized estimationof cancer risk and tips forprevention
Interactive tool for healthprofessionals to measurea woman's risk of invasivebreast cancer
50 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
Search Engines Specializing in Genetics and GenomicsResourceCenters for DiseaseControl: Genomics andDisease Prevention GDPInfoSearch
Genetics Resources onthe Web (GROW)
Georgetown University:National InformationResource on Ethics &Human Genetics
National NewbornScreening and GeneticsResource Center: GeneticEducation Materials(GEM) Database
Contacthttp://apps.nccd.cdc.gov/genomics/GDPquerytool/searchbygene.asp
http://www.geneticsresources.org/
http://www.georgetown.edu/research/nrcbl/nirehg/index.htm
http://www.gemdatabase.org/GEMDatabase/index.asp
DescriptionProvides access to infor-mation and resources forguiding public healthresearch, policy, and prac-tice on using geneticinformation to improvehealth and prevent dis-ease... Includes core competencies for publichealth genetics
Provides health profes-sionals and the publicwith high quality infor-mation related to humangenetics, with a particularfocus on genetic medi-cine and health
Search engine for litera-ture on specific issuesrelated to ethics andhuman genetics
Search engine for policydocuments and clinicalissues
Appendix A Resources to Support Genetics and Genomics Competencies 51
United States Government AgenciesResourceCenter for DiseaseControl and Prevention:National Office of PublicHealth Genomics(NOPHG), formerly theOffice of Genomics andDisease Prevention
Department of EnergyOffice of Science(DOEgenomes.org)
Genetic ModificationClinical ResearchInformation System(GeMCRIS®)
Department of Healthand Human Services
Health Resources andServices Administration(HRSA): Genetics ServicesBranch of Maternal andChild Health Bureau
National CancerInstitute's Cancer.gov
National HumanGenome ResearchInstitute
Contacthttp://www.cdc.gov/genomics/
http://www.doegenomes.org/
http://www.gemcris.od.nih.gov/
http://ask.hrsa.gov/ProfessionalPublications.cfm?start=72
http://www.mchb.hrsa.gov/
http://www.cancer.gov/cancertopics/prevention-genetics-causes/genetics
http://www.genome.gov
DescriptionInformation abouthuman genetic discover-ies and how to use toimprove health and pre-vent disease, includinglinks to many resources
Multiple genomics edu-cational resources
Access to an array ofinformation abouthuman gene transfer tri-als registered with theNIH
Report of the expertpanel on genetics andnursing; includesimplications for educa-tion and practice
To support newbornscreening and increaseknowledge of howgenetic disorders affecthealth
Authoritative informationabout cancer genetics
Research, policy, ethics,education, and traininginformation andresources about geneticand rare diseases
52 Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics
National Institute ofEnvironmental HealthSciences (NIEHS):Environmental GenomeProject
National Institutes ofHealth Obesity Research
National Institutes ofHealth
National Institute ofNursing Research:Summer GeneticsInstitute
Office of Rare Diseases,National Institutes ofHealth
Secretary's AdvisoryCommittee on GeneticTesting
Secretary's AdvisoryCommittee on Genetics,Health, and Society
http://www.niehs.nih.gov/envgenom/home.htm
http://obesityresearch.nih.gov/
http://www.nih.gov/
ninr.nih.gov/research/
http://rarediseases.info.nih.gov/
http://www4.od.nih.gov/oba/sacgt/aboutsacgt.htm
http://www4.od.nih.gov/oba/sacghs/reports/reports.html
Project to improve under-standing of humangenetic susceptibility toenvironmental exposures
Information about NIH-supported research thatseeks to identify genetic,behavioral, and environ-mental causes of obesityand to develop preven-tion and treatment strategies
Research, health policy,ethics, education, andtraining information andresources
Summer GeneticsInstitute programdesigned to providetraining in moleculargenetics for use inresearch and clinical practice
Information on thou-sands of rare and geneticdiseases
Public policy issuesregarding genetic testing(archival)
Reports on public policyissues regarding theimpact of genetic tech-nologies on society
ESSENTIAL NURSING COMPETENCIES AND CURRICULA
GUIDELINES FOR GENETICS AND GENOMICS
Central to contemporary health care is that all diseases and health conditions have somegenetic or genomic component. Nursing practice, then, increasingly includes genetics andgenomics along its pathways of prevention, screening, diagnostics, prognostics, selection oftreatment, and monitoring of treatment effectiveness.This monograph succinctly addressesand articulates the competencies essential for all nursing practice, as well as the subsequentcurricular guidelines for all nursing education.
Developed by an independent panel of nurse leaders from clinical, research, and academicsettings, this monograph reflects their goal: to establish the minimum basis for preparing thenursing workforce to deliver competent genetic- and genomic-focused nursing care.Whileneither replacing nor recreating existing standards of practice, these essential competenciesdo incorporate the genetic and genomic perspective into all nursing education and practice.
Based on the panel’s review of peer-reviewed published work, input from nurse representa-tives at a stakeholders’ meeting in September 2005, and public comment from the nursingcommunity at large, this monograph reflects nursing’s consensus on the minimal amount ofgenetic and genomic competency expected by every registered nurse, regardless of aca-demic preparation, practice setting, role, or specialty.
To supplement its primary content, this monograph also includes a comprehensive selectionof resources—primarily those available online—that pertain directly to the competenciesand guidelines. As a result, Essential Nursing Competencies and Curricula Guidelines for Geneticsand Genomics, will prove to be an essential volume for nursing professional development atall levels.
ISBN-13: 978-1-55810-239-2 ISBN-10: 1-55810-239-6Supported by the National Human Genome Research Institute and the Office of Rare Diseases, both of the National Institutes of Health.© 2006 American Nurses Association Published September 2006