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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.

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

http://www.genome.gov

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


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


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


• 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.


http://NursingWorld.org/ethics/genetics

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.


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

http://www.nlnac.org/home.htm

http://www.geneticseducation.nhs.uk

• 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


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

http://www.nchpeg.org/

http://www.isong.org/support/scope.cfm

http://www.cdc.gov/genomics/training/competencies/comps.htm

http://www.cdc.gov/genomics/training/competencies/comps.htm

http://ask.hrsa.gov/ProfessionalPublications.cfm?start=72


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.


http://www.glam.ac.uk/socs/research/gpu/FinalReport.pdf

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


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

http://www.icn.ch/bookshop.htm

http://www.icn.ch/bookshop.htm


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.

http://www.Nursebooks.org

http://www.Nursebooks.org


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.


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

http://www.fccc.edu/nursing/education/

http://www.fccc.edu/nursing/education/

http://www.fbr.org/publications/pub_curic.html



http://cityofhope.org/CME/cmemainpg.htm

http://cityofhope.org/CME/cmemainpg.htm

http://www.cincinnatichildrens.org/ed/clinical/gpnf



http://www.asco.org


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

http://www.ons.org/ceCentral/prevention/

http://www.ons.org/ceCentral/prevention/

mailto:[email protected]

http://ninr.nih.gov/ninr/research/dir/sgi.html

http://ninr.nih.gov/ninr/research/dir/sgi.html



http://www.isong.org/events/conference.cfm

http://www.isong.org/events/conference.cfm

mailto:[email protected]


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

http://www.pitt.edu/~nursing/academicprograms/certificates/post_masters_cert_genetics.html





http://www.pitt.edu/~nursing/academicprograms/certificates/post_bacc_genetics.html






http://www.nursing.uiowa.edu/academprog/msn/geneticsindex.htm




http://www.cumc.columbia.edu/dept/nursing/programs/cg.html




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)

http://www.son.washington.edu/eo/apgn

http://www.son.washington.edu/eo/apgn

http://nurseweb.ucsf.edu/www/genomic.htm

http://nurseweb.ucsf.edu/www/genomic.htm


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





http://www.nbdpn.org



http://www.cdc.gov/genomics/hugenet/default.htm



http://www.genetests.org/


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





http://209.61.158.31:8287/

http://209.61.158.31:8287/








http://vector.cshl.org/

http://www.dnafiles.org/

http://jamesline.com/patientsandvisitors/prevention/cancergenetics/





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













http://ghr.nlm.nih.gov/




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



http://www.geneticalliance.org

http://www.geneticalliance.org



http://www.geneticfairness.org/

http://www.geneticfairness.org/


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.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











http://www.bioethics.net

http://aappolicy.aappublications.org/





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

http://www.bioethics.gov/

http://www.ncsl.org/programs/health/genetics.htm










http://www.genelaw.info/




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



http://thomas.loc.gov/





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





http://www.pedigree-draw.com

http://www.pedigree-draw.com



http://www.ama-assn.org/ama/pub/category/2380.html




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://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

http://snp.cshl.org/







http://genome.wustl.edu/

http://www.ensembl.org




http://cgap.nci.nih.gov

http://www.ensembl.org/Data/blast.html

http://www.ensembl.org/Data/blast.html


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




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

http://www.acmg.net/resources/cd-rom-01/intro.asp



http://iml.dartmouth.edu/education/cme/Genetics/

http://iml.dartmouth.edu/education/cme/Genetics/






http://www.fgec.org

http://www.dnalc.org/



http://www.bwhct.nhs.uk/genetics-cemg-home.htm




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.cancer.gov/cancerinfo/prevention-genetics-causes


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










http://www.cincinnatichildrens.org/ed/clinical/gpnf/default.htm



http://www.gepn.cchmc.org








Physician’s DatabaseQuery (PDQ®) CancerInformation Summaries

Practice-Based GeneticsCurricula for NurseEducators

Six Weeks to GenomicAwareness

http://www.cancer.gov/cancerinfo/pdq/genetics


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










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









http://www.phgu.org.uk/pages/work/pgx.htm

http://www.phgu.org.uk/pages/work/pgx.htm





http://www.health.state.ny.us/nysdoh/taskfce/screening.htm




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









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

http://www.ssiem.org/

http://www.isong.org/






http://www.ashg.org/

http://www.acmg.net/

http://www.faseb.org/genetics/abgc/abgcmenu.htm




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

http://www.nchpeg.org

http://www.isong.org/about/position.cfm

http://www.isong.org/about/position.cfm



http://www.awhonn.org

http://www.asco.org

http://www.nursingworld.org

http://www.nursingworld.org


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




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



http://www.yourcancerrisk.harvard.edu/

http://www.yourcancerrisk.harvard.edu/


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.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







http://www.geneticsresources.org

http://www.geneticsresources.org

http://apps.nccd.cdc.gov/genomics/GDPquerytool/searchbygene.asp




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://www.mchb.hrsa.gov/

http://www.cancer.gov/cancertopics/prevention-genetics-causes/genetics


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















http://www.cdc.gov/genomics/

http://www.cdc.gov/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









ninr.nih.gov/research/

http://www.nih.gov/






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