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GENETICS AND GENOMICS SERIES Genomic Education Resources for Nursing Faculty Emma Tonkin, PhD, BSc(Hons) 1 , Kathleen Calzone, MSN, RN, APNG, FAAN 2 , Jean Jenkins, PhD, RN, FAAN 3 , Dale Lea, MPH, RN, CGC, FAAN 4 , & Cynthia Prows, CNS, RN, FAAN 5 1 Education Development Officer, National Health Service, National Genetics Education & Development Centre, University of Glamorgan, Pontypridd, Wales, U.K. 2 Xi, Senior Nurse Specialist (Research), National Cancer Institute, Center for Cancer Research-Genetics Branch, National Institutes of Health, Bethesda, MD, USA 3 Kappa, Senior Clinical Advisor, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA 4 Consultant, Maine Genetics Program, Department of Health and Human Services, Augusta, Maine, USA 5 Beta Iota, Clinical Nurse Specialist, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA Key words Education, curriculum, learning, nursing practice, genetics, heredity, professional issues, professional ethics, professional standards Correspondence Dr. Emma Tonkin, NHS National Genetics Education & Development Centre Faculty of Health, Sport and Science, University of Glamorgan, Pontypridd, CF37 1DL, Wales, U.K. E-mail: [email protected] Accepted May 14, 2011 doi: 10.1111/j.1547-5069.2011.01415.x Abstract Purpose: The increasing recognition regarding the relevance of genomics across the scope of nursing healthcare practice has resulted in the drive to integrate appropriate genomic knowledge and skills into nurse education and training. In this final article of the series Genetics-Genomics and Nursing Edu- cation, we will look at genetic and genomic education resources and the factors that influence both their creation and use. Organizing Construct: In considering nurse education from faculty and student perspectives, four identified areas of need have been used as the organizing constructs: guidance (what should be taught and at what level of complexity); support and training; access to genetics professionals and service users; and quality resources. This paper sets out to address the following points: (a) why there is a need for quality genomics education resources to support nurse education; (b) what is required from a resource to make it “useful” for the user; and (c) how the quality and impact of a resource can be measured. While not exhaustive, information is provided to a number of globally accessi- ble resources, along with detailed descriptions of selected teaching or learning tools. Strategies for evaluating the suitability of a resource and suggestions on how genomic resources can be used within nurse education are provided. Conclusions: The use of clinically relevant resources that link theory to pro- fessional practice and which meet predefined learning outcomes and practice indicators for nurse education and training will facilitate the integration of ge- nomics into curricula by nurse faculty. Clinical Relevance: Providing clinically meaningful education and training in genomics is central to enabling every nurse to develop the appropriate knowl- edge and skills in genomics in order to provide optimum care to individuals and families now, and to facilitate the integration of new information and technol- ogy as it becomes available across mainstream healthcare services. Knowledge of the structure and function of genes and the complex interplay they have with environmental fac- tors is enabling a better understanding of the molecular mechanisms of health, illness, and treatment response, and is allowing the development of new diagnostics, targeted therapies, and vaccines. The roles that genomics are playing in changing the face of healthcare delivery and the potential benefits and challenges this presents to individuals, families, and health professionals are extensive (Calzone et al., 2010; Lea, Skirton, Read, & Williams, 2011). As the largest health profession, nurses are pivotal in helping realize this transformation through genomic nursing, that is, the incorporation of genetics and genomics into nursing practice in order to promote 330 Journal of Nursing Scholarship, 2011; 43:4, 330–340. No claim to original US government works

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GENETICS AND GENOMICS SERIES

Genomic Education Resources for Nursing FacultyEmma Tonkin, PhD, BSc(Hons)1, Kathleen Calzone, MSN, RN, APNG, FAAN2, Jean Jenkins, PhD, RN, FAAN3,Dale Lea, MPH, RN, CGC, FAAN4, & Cynthia Prows, CNS, RN, FAAN5

1 Education Development Officer, National Health Service, National Genetics Education & Development Centre, University of Glamorgan, Pontypridd,Wales, U.K.2Xi, Senior Nurse Specialist (Research), National Cancer Institute, Center for Cancer Research-Genetics Branch, National Institutes of Health, Bethesda,MD, USA3 Kappa, Senior Clinical Advisor, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA4Consultant, Maine Genetics Program, Department of Health and Human Services, Augusta, Maine, USA5Beta Iota, Clinical Nurse Specialist, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA

Key wordsEducation, curriculum, learning, nursing

practice, genetics, heredity, professional issues,

professional ethics, professional standards

CorrespondenceDr. Emma Tonkin, NHS National Genetics

Education & Development Centre Faculty of

Health, Sport and Science, University of

Glamorgan, Pontypridd, CF37 1DL, Wales, U.K.

E-mail: [email protected]

Accepted May 14, 2011

doi: 10.1111/j.1547-5069.2011.01415.x

Abstract

Purpose: The increasing recognition regarding the relevance of genomicsacross the scope of nursing healthcare practice has resulted in the drive tointegrate appropriate genomic knowledge and skills into nurse education andtraining. In this final article of the series Genetics-Genomics and Nursing Edu-cation, we will look at genetic and genomic education resources and the factorsthat influence both their creation and use.Organizing Construct: In considering nurse education from faculty andstudent perspectives, four identified areas of need have been used as theorganizing constructs: guidance (what should be taught and at what level ofcomplexity); support and training; access to genetics professionals and serviceusers; and quality resources. This paper sets out to address the following points:(a) why there is a need for quality genomics education resources to supportnurse education; (b) what is required from a resource to make it “useful” forthe user; and (c) how the quality and impact of a resource can be measured.While not exhaustive, information is provided to a number of globally accessi-ble resources, along with detailed descriptions of selected teaching or learningtools. Strategies for evaluating the suitability of a resource and suggestions onhow genomic resources can be used within nurse education are provided.Conclusions: The use of clinically relevant resources that link theory to pro-fessional practice and which meet predefined learning outcomes and practiceindicators for nurse education and training will facilitate the integration of ge-nomics into curricula by nurse faculty.Clinical Relevance: Providing clinically meaningful education and training ingenomics is central to enabling every nurse to develop the appropriate knowl-edge and skills in genomics in order to provide optimum care to individuals andfamilies now, and to facilitate the integration of new information and technol-ogy as it becomes available across mainstream healthcare services.

Knowledge of the structure and function of genes andthe complex interplay they have with environmental fac-tors is enabling a better understanding of the molecularmechanisms of health, illness, and treatment response,and is allowing the development of new diagnostics,targeted therapies, and vaccines. The roles that genomicsare playing in changing the face of healthcare delivery

and the potential benefits and challenges this presentsto individuals, families, and health professionals areextensive (Calzone et al., 2010; Lea, Skirton, Read, &Williams, 2011). As the largest health profession, nursesare pivotal in helping realize this transformation throughgenomic nursing, that is, the incorporation of geneticsand genomics into nursing practice in order to promote

330 Journal of Nursing Scholarship, 2011; 43:4, 330–340.No claim to original US government works

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Tonkin et al. Genomic Resources for Nurse Educators

quality healthcare outcomes. Calls by governments andpolicy leaders for health professionals working outsidespecialist genetic services to be better educated in thissubject area are long standing (Department of Health,2003; Health Resources and Services Administration,Bureau of Health Professions, 2000). McInerney (2008)provided a contextual overview of genomics education,setting out what has and has not changed over thepreceding years. While there is still much to be doneacross the profession to raise awareness of the relevanceof genomics within nursing practice, the focus of activityis now steadily moving from a position of justificationto one of considering how best to deliver clinically rel-evant education and training that is then appropriatelyincorporated into practice (Kirk, Tonkin, & Burke, 2008;Seibert, Edwards, & Maradiegue, 2007).

Internationally, countries appear to be at very dif-ferent stages in developing the knowledge and skillsof their nurses in genomics (Kirk, Calzone, Arimori, &Tonkin, 2011). Even within countries such as the UnitedKingdom and the United States, which have long-termstrategies to drive and support professional bodies andeducational establishments in the delivery of genomicseducation and training, the view is that there is stillmuch work to be done.

Focusing on the needs of educators and their students,this article provides an overview of key issues relating tothe integration of genomics into nurse education, and re-sources that are currently available to support this. Al-though concentrating on the education prior to the pointof qualification (i.e., registration or licensure), many ofthe tools are appropriate for use with the significant num-ber of qualified nurses who received minimal genomicseducation during their initial training or subsequent con-tinuing education.

Nursing schools that do commit to support the inclu-sion of genomics within curricula often have numer-ous barriers to overcome. Nursing faculty who are partof a “champions network” for genetics education in theUnited Kingdom identified a number of areas where helpwas needed (Kirk & Tonkin, 2006), which can be summa-rized in the four themes discussed below: guidance (whatshould be taught and at what level of complexity); sup-port and training (how to teach genomics effectively); ac-cess to genetics professionals and service users (on clinicalplacements and to support and enhance teaching), andquality resources.

Guidance–Education and TrainingFrameworks in Genomics

Time is always of a premium. Nursing curricula areoften perceived to be overfull with no additional capacity

for new content (Kirk & Tonkin, 2006; Prows, Glass,Nicol, Skirton, & Williams, 2005). Curriculum timeallocated specifically to genomics may be minimal, andthe time an educator may have to develop new teachingmaterial may be limited. As genomics should be seen as across-cutting topic threaded throughout a curriculum, di-rection on where it can be included within preexisting el-ements of a course or module enables faculty to integratethe subject more readily without the need for significantadditional curriculum time. An example of how this canbe achieved successfully is provided by author C.P inthe Nursing Curriculum Modules available at CincinnatiChildren’s Hospital (http://www.cincinnatichildrens.org/ed/clinical/gpnf/resources/curriculum/nursing/curriculum-tables.htm). Additional approaches to facili-tating curriculum change are discussed elsewhere in theseries (Daack-Hirsch, Dieter, & Quinn Griffin, 2011).

In Japan, the United States, and the United Kingdom,genomics education and training frameworks for nursesset out the scope of knowledge and skills, and the levelof competence expected of the profession (Arimoriet al., 2007; Consensus Panel on Genetic/GenomicNursing Competencies, 2009; National Health Ser-vice National Genetics Education and DevelopmentCentre, 2010). Similarly, the EuroGentest initiative(http://www.eurogentest.org/) has defined core com-petencies in genetics for European health professionals,including generalist and specialist nurses, specifically as abasis to guide curricula and new initiatives in professionaleducation (Skirton, Lewis, Kent, & Coviello, 2010). Kirket al. (2011) discussed the value of competence frame-works to informing professional development, and all ofthe current frameworks provide excellent starting pointsfor nursing schools looking to develop their curricula.Competencies are written in a way that make theminternationally applicable, and faculty are encouragedto select and use a framework to map content gaps incurricula and identify the type of resources needed to ad-dress selected competencies. Rather than provide detailedlists of curricula topics, frameworks specify what is to beachieved and thus allow for faculty creativity and enableschools to adopt the most appropriate educational strat-egy based on local/national requirements and studenteducation level (diploma, bachelor’s degree, etc.).

Support and Training to Teach GenomicsEffectively

With genomics being a subject area that may be un-familiar and is rapidly changing, keeping up to datecan be time consuming and daunting. Although fac-ulty may be experienced nurse educators, many findthemselves in the position of developing and delivering

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genomics content having had little education or subse-quent clinical exposure in this subject area (Williamset al., 2011). Those without a command of the materialcan have difficulty teaching genomics, identifying clin-ically relevant examples, and responding to questions.This can result in an inability to meaningfully relate bio-science content to healthcare delivery. Schools of nursingcolocated with bioscience departments or clinical geneticsservices may choose to involve science experts or clinicalproviders in teaching wherever possible. This enriches thestudents’ experience, ensures that the material being de-livered is up to date and accurate, reinforces the clinicalrelevance of core genomic content, and enhances under-standing as well as integration into the clinical practicumarena, which is critical to promote optimal competency.However, clinical workload, geographical isolation, or thefinancial cost of buying-in external instructors mean thisis not always possible. In addition, it is important to em-power and equip nurse educators to teach this subject,ensuring that other nurse faculty members as well as stu-dents see genomics embedded firmly within their ownprofession.

As discussed earlier in the series (Daack-Hirsch, Dieter,& Quinn Griffin, 2011; Williams et al., 2011), assessmentof faculty knowledge base; access to appropriate con-tinuing education opportunities, including fundamentaltraining in the subject area; updating of knowledge (e.g.,new genomic healthcare applications) and skills (e.g.,taking and recording family health history); or guidanceon how to deliver genomics education in a clinicallymeaningful way is crucial. The need for professional up-dating applies equally to “genetics experts.” Bioscientistswho lack understanding of the nursing role may requiresupport to link theory to nursing practice. Some clinicalgeneticists and genetic counselors have little teachingexperience and benefit from guidance on how to delivertheir sessions effectively (see Professional updating–education programs to prepare nurse faculty in Table 1).Tools to support teaching can also be found online.For example, the InsideCancer website from the DolanDNA Learning Center (see Table 1) includes a teachingcenter that incorporates a lesson exchange and a tool forbuilding multimedia presentations.

Access to Genetics Professionalsand Service Users

Educational approaches linking scientific principleswith clinical training (particularly in relation to commondiseases, which are most frequently encountered) and re-sources that clearly illustrate how genetics and genomicsare relevant on a daily basis are essential (Guttmacher,Porteous, & McInerney, 2007). Faculty members with lit-

tle nursing experience of genomics often find teachingthe topic difficult as they have few or no personal ex-amples to draw upon. In addition, opportunities duringplacements for students to experience genomics firsthandare often limited. Where patient or family contact is notpossible, resources and teaching approaches need to beused that provide students with simulated exposure inorder to make explicit the relevance of genomics acrossnursing practice (Guttmacher et al., 2007). One approachis through the use of new media and virtual patients(VPs).

New media is the delivery of interactive audio andvideo for digital (computer, DVD, PDA, etc.) use. The in-teractive element allows users to move beyond passiveviewing to active participation. Clinical evidence-basedinstruction and scenarios can utilize a range of “patients”such as manikins, human actors following scripts, pa-tient instructors, or computer-generated patients (Bosek,Li, & Hicks, 2007) to standardize learning. Studies haveshown that computer-based learning with interactive pa-tient scenarios is equivalent to or better than the tradi-tional nursing process in development of critical think-ing, skill performance, and learner satisfaction (Boseket al., 2007; Letterie, 2003; Travale, 2007).

VPs are a valuable vehicle to overcome lack of genomicclinical experiences or to address complex and challeng-ing subjects. For example, situations encountered whentaking a family history in the clinical setting may cre-ate difficult ethical dilemmas for the healthcare provider.Simulation during training can build self-confidence inknowing how to assess family history, identify thoseneeding further follow-up and the resources for appropri-ate referral, and in turn facilitate the integration of suchskills in the clinical setting.

Quality Resources– What Do Facultyand Students Want From a GenomicsResource?

Studies to identify the types of teaching or learningresources and environments preferred by faculty andstudents for genomics education have been undertaken.While textbooks and websites were most frequentlyused by U.K. educators, “access to users and providersof genetic services willing to visit and talk with studentgroups” and “annotated scenarios and case studies” wereidentified by the same respondents as being the most use-ful teaching formats (Kirk & Tonkin, 2006, p. 35). Gresty,Skirton, and Evenden (2007) surveyed students andqualified practitioners (nurses and midwives) prior to thedevelopment of the e-learning resource GeneSense (seeTable 1) in order to understand potential users’ learningrequirements and attitudes toward an Internet-based

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Table 1. Selection of Key Genetics/Genomics Education Resources

Resource Description Contact information or URL Charge

Textbooks:

Genetics and Ethics in Health Care:

New Questions in the Age of

Genomic Health (2008)

Current ethical challenges associated with

advances in genetics technology and

genomic health care from a wide

cross-section of cultural, racial,

religious, and technical perspectives

are explored.

Author: Monsen, R. B.Publisher:

American Nurses Publishing

ISBN-13: 9781558102637

See publisher

Genetics in Practice: A Clinical

Approach for Healthcare

Practitioners (2008)

Case studies are used to explain models

of inheritance and explore the

possibilities for families, following

genetic diagnosis. Family history

taking, risk assessment, basic biology

of chromosomes and genes, and

laboratory techniques are all

described. Issues of ethnicity and

ethics are addressed.

Authors: Haydon, J. Publisher:

John Wiley & Sons Ltd ISBN:

978–1861564641

See publisher

Genetics for the Health Sciences: A

Handbook for Clinical Healthcare

(2009)

The general principles of genetics are

linked to real-world examples using a

life-stage approach. Written to help

all those in clinical health care

understand the genetics they need in

their professional roles and for

students in the healthcare

professions seeking an

understanding of core genetic

principles and how these are applied

in practice.

Authors: Skirton, H., & Patch,

C.Publisher: Scion Publishing

ISBN: 978–1904842705

See publisher

Web-based material:

Resource repositories

Genetics/Genomics Competency

Centre (G2C2; United States)

Open source repository of curricular

materials and resources dynamically

linked to competency frameworks

and learning outcomes for nurse and

physician assistant educators.

http://www.g-2-c-2.org Free (login required)

Eurogene– Learning portal for

genetic medicine

Eurogene collaborates with a number of

universities across Europe to provide

high quality learning material in the

language of their choice.

http://137.204.230.143/eugeu/ Free (login required)

Selected key sites

Dolan DNA Learning Center A family of websites that include 2-D and

3-D animations, scientist interviews,

historical images and teaching aids.

The teaching center at Inside Cancer

incorporates a lesson exchange and

tool for building multimedia

presentations. See also “Your Genes,

Your Health” (below).

www.dnalc.org Free

Centers for Disease Control and

Prevention, Genomics & Health

Weekly Email Update

Lists genomics-related headlines in lay

literature and citations of published

articles in professional international

literature. Headlines and professional

article titles are organized by topic.

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

update/about.htm

Free subscription

GeneReviews Expert-authored, peer-reviewed disease

descriptions that apply genetic

testing to the diagnosis,

management, and counseling of

patients and families with specific

inherited conditions

http://www.genetests.org Free

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Table 1. Continued

Resource Description Contact information or URL Charge

National Human Genome Research

Institute (NHGRI; United States)

The Institute’s education page links to a

range of multimedia content,

including factsheets of core

bioscience topics and a talking

glossary of genetic terminology (with

audio definitions, animations, and

illustrations that can also be

downloaded as PowerPoint slides).

http://genome.gov/Education/ Free

National Health Servies National

Genetics Education and

Development Centre (United

Kingdom)

Slide sets, factsheets, and animations

cover topics including collecting,

recording, and interpreting family

history information, core concepts,

and the genomic basis of

therapeutics.

http://www.geneticseducation.

nhs.uk/about-us/resources.aspx

Free

Genetics Home Reference, National

Library of Medicine

Glossary, handbook of core concepts and

brief summaries of over 500 genetic

conditions and over 800 genes.

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

Public Health Genetics Foundation

(PHG; United Kingdom)

A variety of materials on genomics and its

public health and policy implications,

primarily aimed at health

professionals and students. Materials

include primers on basic genomics

and its healthcare applications, and

e-learning resources (interactive

tutorials).

http://www.phgfoundation.org/

pages/edu_resources.htm

Free (registration & email

to login)

Wellcome Trust Sanger Institute

(United Kingdom)

Animations and activities designed to help

people understand genetics and

genomic science and the associated

implications. Includes a section

focusing on genomes, health, and

society.

http://www.yourgenome.org/ Free

Murdoch Children’s Research

Institute– Genetics Education &

Health Research Group (Australia)

Range of resources including worksheets

and CD-ROMs developed for health

professionals, school children, and

undergraduates.

http://www.mcri.edu.au/pages/

research/education/default.asp

Free / charge for some

CD-ROMs

Genetics– a topic area within

Scitable by Nature Education

Scitable is a free science library and

personal learning tool produced by

Nature Publishing Group. Topics

covered include Genes and Disease,

and Genetics and Society as well as

an e-Book on the Essentials of

Genetics.

http://www.nature.com/scitable/

topic/genetics-5

http://www.nature.com/

scitable/ebooks/essentials-of-

genetics-8

Free

Surgeon General’s My Family Health

Portrait

Tool designed to enable consumers to

create a three-generation family

health history and save or print it in

pedigree and/or chart formats. Can

be assigned to students to complete

their own family health history or to

use during their clinical rotations.

http://www.hhs.gov/familyhistory/

portrait/index.htm

Free

National Cancer Institute– Targeted

Therapies Tutorials

Online animated tutorials for health

professionals that provide an

overview of the emerging approach

to cancer treatment known as

targeted therapies as well as

advanced research techniques. Also

available on DVD.

www.cancer.gov/cancertopics/

understandingcancer/

targetedtherapies

Free

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Table 1. Continued

Resource

Textbooks: Description Contact information or URL Charge

Clinical simulation/patient stories

Telling Stories, Understanding Real

Life Genetics

Over 100 real stories in written and video

format linked to U.K. genetic

competence framework for nurses.

Teaching/learning resources include

activities, points for reflection and

guidance on relevance to practice.

http://www.tellingstories.nhs.uk Free

Global Genetic/Genomic

Community (G3C)

Interactive unfolding case studies of the

genetics of common diseases.

Self-paced and self-directed using

simulated patients

http://www.g-3-c.org Free

GeneSense Case studies are used to relate key issues

in genetics to current practice for

health practitioners

http://www.genesense.org.uk/ Free (with registration)

Your Genes, Your Health A multimedia guide to genetic disorders

including clips from individuals

talking about the condition they have.

http://www.ygyh.org Free

Genetics in Clinical Practice: A Team

Approach

A virtual genetics clinic designed for

healthcare providers, centering on

four simulated patients who have, or

are at risk of developing, diseases in

which knowledge of clinical genetics

can affect outcomes. In some

instances, patient outcomes depend

on management decisions and other

actions of the learner.

http://iml.dartmouth.edu/

education/cme/Genetics/

Free (requires software

download)

Professional updating: education programs to prepare nurse faculty

Cincinnati Children’s Hospital

Genetics Education Program for

Nurses (United States)

Range of online continuing education

modules, courses and multimedia

resources for nurse faculty and

practicing nurses.

http://www.cincinnatichildrens.

org/ed/clinical/gpnf/default.htm

Cost for modules and

courses

NHS National Genetics Education

and Development Centre (United

Kingdom)

Runs courses on Teaching Genetics

effectively

http://www.geneticseducation.

nhs.uk/

Free

Publications listing additional genetics/genomics resources

Haga, S. B. (2006). Teaching resources for genetics. Nature Reviews Genetics, 7, 223–229.

Guttmacher, A. E., Porteous, M. E., &McInerney, J. D. (2007). Educating health-care professionals about genetics and genomics.Nature Reviews Genetics,

8, 151–157.

Seibert, D., Edwards, Q., & Maradiegue, A. (2007). Integrating genetics into advanced practice nursing curriculum: Strategies for success. Community

Genetics, 10, 45–51.

Maradiegue, A. (2008). A resource guide for learning about genetics. Online Journal of Issues in Nursing, 13. Retrieved from http://www.nursingworld.

org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/vol132008/No1Jan08/ResourceGuide.aspx

approach for genetics. Respondents in this study werestrongly in favor of an online tool, a view not sharedby those surveyed by Kirk, Tonkin, and Birmingham(2007), who indicated a preference of workshops ora mixture of self-study and face-to-face teaching oversolely electronic or web-based learning. Although thesestudies are limited by respondents potentially choosingfamiliar learning approaches, such findings should notlimit creativity when evaluating and selecting resources

to combine into a teaching package. For those deliveringinterdisciplinary education, Farndon and Bennett (2008)acknowledge the importance of recognizing that differ-ent healthcare professions vary in both attitudes towardgenomics as well as learning ethos. Core knowledgelevel of each component group should be assessed andresources tailored to the professions involved.

As discussed above, a number of competence-based ge-nomics education and training frameworks exist for the

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profession. Each incorporates specific learning outcomes(LOs) and practice indicators (PIs) that can be used bynurse faculty to direct curriculum development, struc-ture individual teaching sessions, and guide assessmentof the knowledge learned and skills attained by eachstudent. These competencies also provide useful direc-tion to bioscience faculty and genomic clinicians who areinvited to share their expertise with nursing students.These frameworks, LOs, and PIs have been incorpo-rated into some resources and resource repositories (e.g.,Telling Stories, Understanding Real Life Genetics and TheGenetics/Genomics Competency Center for Education[G2C2], both discussed in detail below) in order to struc-ture content and provide additional support and guidanceto the end user.

Resources for Teaching Genomics

There is a growing abundance of genomic resourcesalready available in a range of formats that cover mostteaching environments and learning approaches. Formany topic areas, particularly bioscience, there is no needto reinvent the wheel and develop new resources. Of-ten there is little reason other than language to be re-stricted to resources produced in one’s own country. Corebioscience topics such as DNA structure and patternsof inheritance are international concepts, and thereare many great resources available that need no al-teration. However, other topics– for example, commu-nication of information and ethical, legal, and socialimplications (ELSIs)– are less frequently covered, anda resource may require some reworking in order to“fit” a teaching session in a different geographical lo-cation. A case in point would be the risk for insur-ance discrimination as a result of genetic informationthat can vary between countries. Always consider thereusability of a resource; could a pedigree for one clin-ical scenario be adapted to teach another clinical con-dition or updated to incorporate local and nationalpolicy guidelines, consent, or another ELSI issue withinyour country?

Finding the Right Genomic Resourceand Assessing Quality

Finding the most appropriate resource can be taxing.Asking colleagues or genetics experts to suggest resourcesis one approach to identifying credible tools; however,the use of web-based search engines can provide ac-cess to a greater selection from which to choose. Asearch of the World Wide Web undertaken for this pa-per using the phrase “teaching DNA structure” identi-fied over 10 million sites, and a brief glance across the

first 20 pages identified a range of resources and teachingstrategies that could potentially be used. Reviewing andfiltering even a few pages to find the most appropriate,up to date, and best quality resource in the quickest timeis a challenge in itself. The need for dedicated portalsthat enable educators to navigate the range of resourcesavailable and systematically identify those most appro-priate to their need has been articulated (Haga, 2006;Secretary’s Advisory Committee on Genetics, Health, andSociety, 2010). Developed by the Access to CredibleGenetics (ATCG) Resource Network, Trust It or Trash It(http://www.trustortrash.org/) is an online tool to helpindividuals think critically about the quality of healthinformation. The three central questions– Who said it?When did they say it? How did they know?– can similarlybe applied when selecting educational resources. An ad-ditional factor to consider is whether the resource has hadprevious external peer review or expert advisory groupreview, indicating the resource has met some quality in-dicators. When faculty members are assessing an educa-tional resource that has not undergone such peer review,use of an evaluation framework can be helpful. Table 2summarizes the criteria used by the G2C2 board. Maincontent areas to assess could include resource goals thataddress course objectives; accuracy and currency of con-tent (i.e., less than 5 years old); effectiveness of deliverymethods used; cost; complexity of content appropriatefor target audience; access (i.e., open); and navigation ofmultimedia tools. Criteria to assess context, cultural fac-tors, and beliefs addressed (i.e., clinical examples includepatients from diverse racial or ethnic backgrounds), andapplicability to the curriculum or course should also beconsidered.

What Is Available?

As a starting point, the authors have selected a num-ber of quality resources that they regularly use effec-tively within nurse education (see Table 1). Many havebeen developed by individuals in front-line genetic ser-vices, large universities/teaching hospitals, or national or-ganizations involved in genomics research and educa-tion, where the academic rigor is high and the contentcan be regularly reviewed and updated. The descriptionsprovided for each resource illustrate the variety of for-mats that can be incorporated across teaching or learningenvironments, including self-directed, face-to-face (smallgroup or large lecture), and electronic or blended learn-ing. Two of the resources have been specifically devel-oped as repositories for genetics-genomics education, andmany of the others incorporate links to additional re-sources. Finally, selections of articles that contain author-selected teaching and learning tools have also been

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Table 2. Resource Evaluation Criteriaa

Goals Goals/objectives clearly stated

Content supports achievement of goals/objectives listed

Content No apparent violations of copyright, patient confidentiality, or conflict of interest

Content is accurate and up to date throughout the material (i.e., < 5 years old)

Citations, references, credits, and/or links are appropriate

Complexity Determination of target audience (i.e., basic, intermediate, advanced)

Determination of learner discipline and level (i.e., undergraduate nurse)

Methods Instructional methods are appropriate for stated goals/objectives

Learner assessment methods are contained in the materials

Learner assessment methods address the stated goals/objectives

Materials are sufficiently described to allow reproduction of the educational experience

If multimedia, all aspects of the resource work

Presentation Material is easy to use

Content is clear and well organized

Context of the content

Cultural factors and beliefs addressed

Material is engaging

Material is available in languages other than English

Material offers an innovative learning/teaching method

Accessibility Materials are available for use

Cost assessment

Final decision Suitable applicability to specific curriculum/course

aModified from current Genetics/Genomics Competency Centre editorial board review process (2011), see http://www.g-2-c-2.org.

included. This list is not exhaustive, and we encouragereaders to use Table 1 as a guide from which to explorefurther.

A number of the examples are online resources; mostare free to access, some require registration or a singlepayment (as indicated). While education institutions insome countries can make the most of these tools be-cause they have excellent information technology infras-tructure and integrated virtual learning environments inwhich to embed online resources, many do not. Globally,online access is not universal and importantly some stu-dents do not have the confidence or motivation to studyin an electronic or blended-learning environment. Wherethis is the case, educators are encouraged to look at waysto reuse or repackage content from online resources formore conventional teaching environments (e.g., as hand-outs or as a discussion topic for a tutorial). We havealso included a selection of practice-based textbooks thatspecifically focus on genetics-genomics.

Three resources are described here in detail. Each hasbeen developed specifically for the nursing community,drawing on the LOs and PIs for genomics education setout in national competence frameworks. Educators canuse these resources knowing that content has been peerreviewed to address the level of knowledge and skills re-quired by the profession.

Genetic/Genomic competency center foreducation. G2C2 is an open-source, multidisciplinaryrepository of curricular materials and resources (in arange of formats) for nursing and physician assistant edu-

cators; a section for genetic counselors is in development.G2C2 (http://www.g-2-c-2.org) is organized with amapping matrix and browsing function that capturespeer-reviewed resources in a searchable database linkedto discipline specific competencies, knowledge areas,performance indicators, learning activities and resources,and outcome assessments. New resources can be con-tributed by users and undergo peer review for relevanceand accuracy by an editorial board that also periodicallyreviews accepted resources for continued relevance andaccuracy. Some of the quality criteria required by theboard are set out in Table 2. All resources listed have de-tailed descriptions, including cost, audience, activity type,and copyright information. A help section is also availableto help first-time navigators use the G2C2 toolkit.

Telling stories, understanding real-lifegenetics. Developed to promote understanding ofthe impact genetics-genomics has on real life, and itsrelevance to healthcare practice, this website draws oninterviews from over 100 individuals with, at risk of de-veloping, or caring for someone with a genetic condition.Providing exposure to situations that might not otherwisebe encountered during training, identifying the most ap-propriate story for a teaching session is straightforward.The bank of stories (http://www.tellingstories.nhs.uk/)is searchable, with a range of options including nursingcompetence, inheritance pattern, life stage, clinicalspecialty, role, and issues raised. Each story is reproducedverbatim to read online or print as a handout, and videoclips (that can be downloaded and incorporated within

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a teaching presentation) are available for many stories.Information is also provided on how the story is relevantto nursing practice, and the story toolbox provides pointsfor reflection, activities, quotes, and links to furtherinformation that can be used to supplement teaching orguide self-directed learning. As interviewees talk aboutthe day-to-day issues of their condition (communicationwith health professionals, pain relief, family burden,etc.), the resource is an excellent tool for teaching othertopics, thus allowing genomics to be integrated acrosscurricula rather than being discussed in isolation. Con-tent for each story toolbox is written and reviewed byan editorial board with extensive experience in nursing,clinical genetics, health education, and electronic andblended learning.

Global genetic-genomic community (G3C). G3C(http://www.g-3-c.org) is an online interactive unfold-ing case studies resource for use by faculty with entry-level nursing students. The format is web based, bilingual(English and Spanish), interactive, self-paced, and self-directed. Case studies use professional actors as simulatedpatients. Students can ask questions of the simulated pa-tient, and responses consist of video and audio recordingsfollowed by the next questions students can consider.Each clinical encounter incorporates supplemental stu-dent education activities and resources. Medical recordscan be viewed, and new information such as outside testreports can be collected as part of the encounter, viewed,and placed in the virtual medical record. The cases areethnically diverse and focus on family history assessment,direct to consumer marketing and testing, family issues,personal assessment, and the genetics-genomics of dia-betes and cardiovascular disease. At the time of this writ-ing, additional multidisciplinary cases in the genomics ofbreast and colon cancers were under development.

Faculty support for use of this resource is designedaround the U.S. nursing competencies (Consensus Panelon Genetic/Genomic Nursing Competencies, 2009) andincludes an introduction to G3C, background informa-tion, additional educator resources, suggestions of how touse this material in nursing curricula, and a case-specificsummary for use with each case. Faculty case summariesinclude case objectives, suggestions for use, supplementalstudent activities, classroom discussion points, links to thecompetencies addressed by the case, additional readings,and additional resources.

Using Genomic Resources

As genomic resources are available in a variety offormats, they are suitable for use across teaching andlearning environments, including didactic (small groupor large lecture), problem-based, and electronic and

blended learning. For example the talking glossary ofgenetic terminology produced by the U.S. NationalHuman Genome Institute incorporates audio definitions,three-dimensional animations, illustrations available asPowerPoint slides, and test questions. How an educa-tor chooses to use or repackage a resource is depen-dent on the teaching environment, lesson content, andpreferred learning styles of the students. Examples ofhow the authors have successfully used resources in-clude the incorporation of real patient and carer ex-periences at the start of bioscience sessions to provideclinical context and stimulate interest in learning corescience concepts; role play/simulation to develop keyskills in taking and drawing a family health history andcommunicating difficult information; using a single casestudy across multiple courses/modules within a curricu-lum (e.g., Tony’s story of living with sickle cell disease[http://www.tellingstories.nhs.uk/stories.asp?id = 3] canbe used to teach many topics in addition to autosomal-recessive inheritance, e.g., oxygen transport, breakingbad news, transitional care, pain management). Impor-tantly, the resource content selected is always clinicallyrelevant to the individual and group being taught. Notdoing so risks failing to engage students in the topic.

Discussion

Every healthcare professional provided with educa-tion and training can develop appropriate knowledge andskills in genomics. Internationally, many countries arestill in the early stages of incorporating genetics-genomicsinto nurse training. Using the extensive array of qualityresources currently available will facilitate a faster transi-tion to achieving this objective and, once embedded con-sistently within prequalification nurse education, will actas a driver for core knowledge and skills to become uni-versal across the profession. Repurposing content for an-other country can be challenging but can be preferableto developing a new resource from the beginning. Withan ever-increasing scientific and clinical knowledge baseand developments in genomic health care moving intomainstream practice, some education resources will needto be updated and new ones developed to fill emerginggaps (Haga, 2006). Common complex conditions, directto consumer testing, and pharmacogenomics are threeexpanding areas where additional resources would bewelcome. More accessible, credible, just-in-time informa-tion will be required as nurses and other health profes-sionals identify gaps in knowledge at the point of care(Farndon & Bennett, 2008; Guttmacher et al., 2007).Measures must be put in place to ensure that the errorsand gaps in content identified in online resources used byhealthcare professionals (Levy, LoPresti, & Seibert, 2008)

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are corrected by the developers, and users (including ed-ucators) must become confident in assessing the qualityof the resources they choose to use. Sound education andtraining in combination with access to reliable resourcesprovides a foundation for the delivery of quality genomichealth care.

Conclusions

The use of clinically relevant resources that link the-ory to professional practice and which meet predefinedlearning outcomes and practice indicators for nurse ed-ucation and training will facilitate the integration ofgenomics into curricula by nurse faculty.

Clinical Resources

Please refer to Table 1 for a list of websites that areprovided to aid the reader in the delivery of clinicallyrelevant genetics-genomics education.

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