Session Room 291 What Does Genomic Competency Mean for You? Session Description: Learn about established competencies and guidelines for genomics and discover approaches for integrating genomics information and technology into nursing practice. You ll also explore the status of national initiatives to improve integration of genomics into oncology nursing practice, education, and research. Level of Content: Level I Content Area: Clinical Practice Coordinator/Speaker: Jean Jenkins, RN, BS, MSN, PhD, FAAN Senior Clinical Advisor National Human Genome Research Institute Bethesda, MD jean.jenkins@nih.gov Full Disclosure: Nothing to Disclose Speaker: Georgia Cusack, RN, MS Clinical Nurse Specialist for Outcomes Management National Institutes of Health Bethesda, MD mcusackirish@hotmail.com Full Disclosure: Speaker intends to discuss unapproved/investigational use of a commercial product/device during this session. At the end of this session, participants will be able to: 1. List four implications of genetic and genomic information on nursing practice. Content Outline: I. Genomics: What it is and relevance to oncology nursing practice A. Overview B. Emerging genomic technologies and implications for nursing practice C. Application to clinical care 1. Across the cancer continuum 2. Across the nursing profession 3. ONS position statements D. Relevance to nursing practice Personalized medicine 1. Risk assessment 2. Diagnosis 3. Tumor profiling 2. Targeted therapies 3. Pharmacogenetics/pharmacogenomics E. Ethical considerations 1. Environmental context a. Physical b. Occupational c. Emotional d. Sociocultural e. Religious 2. Discrimination (GINA) 3. Direct to consumer genetic testing II. Genomics and AACN essentials A. Review of genetic/genomic content B. AACN baccalaureate and master s essentials C. Relevancy for oncology nursing education and practice III. The essential nursing competencies and curricula guidelines for genetics and genomics A. Introduction to the competencies 1. How they were developed 2. Process of consensus 3. Endorsement by ONS B. Outcome indicators C. Scenario 1. How the competencies impact nursing practice 2. What does competency mean for you? IV. Nursing competency A. Visioning B. Leadership C. Exemplar V. Genetic/genomic resources A. ONS Resources B. NCI (www.cancer.gov) C. NHGRI (www.genome.gov) D. Education resource site E. U.S. Surgeon General s Family History Initiative F. Case scenarios G. Champions H. Policy (e.g., SACGHS, EGAPP) I. Interdisciplinary Education Consortium (NCH- PEG) J. Nurses in genetics K. Telling Stories: Understanding Real Life Genetics Oncology Nursing Society 37th Annual Congress 65
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Kirk, M., Calzone, K., Arimori, N., & Tonkin, E. (2011). Genetics and genomics competencies and nursing regulation. Journal of Nursing Scholarship, 43(2), 107 116. Kirk, M., & Tonkin, E. (2009). Understanding the role of genetics and genomic in health 1: Background. Nurs Times, 105(45), 18 22. Kirk, M., & Tonkin, E. (2009). Understanding the role of genetics and genomic in health 2: Implications for practice. Nurs Times, 105(46), 19 23. Kirk, et al. (2008). Engaging nurses in genetics: the strategic approach of the NHS National Genetics Education and Development Centre. J Genet Couns, (2), 180 188. Kirk, M., Tonkin, E., & Burke, S. (2007). Engaging nurses in genetics: The Strategic Approach of the NHS National Genetics Education and Development Centre. Journal of Genet Counseling, 17(20), 180 188. Kenner, C., Lewis, J., Pressler, J., & Little, C. (2008). Neonatal genetic testing is more than screening. Crit Care Nurs Clin North Am, 20(2), 233 237. Knerr, S. et al. (2010). 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Pestka,E.L., Derscheid, D.J., Ellenbecker, S.M., Schmid, P.J., O Neil, M.L., Ray-Mihm, R.J., & Cox, D.L. (2010). Use of genomic assessments and interventions in psychiatric nursing practice. Issues in Mental Health Nursing, 31(10), 623 630. Pharmacogenomics Educational Program (PharmGenEd ). University of California, San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences. Retreived from http://pharmacogenomics.ucsd.edu. Prows, C.A., Hetteberg, C., Hopkin, R.J., Latta, K.K., & Powers, S.M. (2004). Development of a web-based genetics institute for a nursing audience. Journal of Continuing Education in Nursing, 35(5), 223 231. Prows, C.A. (2008). Clinical aspects of genomics: An update. Online Journal of Issues in Nursing. Retrieved from http://www. nursingworld.org/mainmenucategories/anamarketplace/ ANAPeriodicals/OJIN/TableofContents/vol132008/No1Jan08/ ClinicalAspectsofGenomics.aspx. Read, C.Y., Dylis, A.M., Mott, S.R., & Fairchild, N.J. (2004). 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Psychiatric genetics: Applications in clinical practice. Washington, DC: American Psychiatric Publishing. Snipes, S. et al. (2011). Is race medically relevant? A qualitative study of physician attitudes about the role of race in treatment decision-making. BMC Health Services Research, 11(183), 1 10. Spruill, I., Coleman, B., & Collins-McNeil, J. (2009). Knowledge, beliefs, and practices of African-American nurses. J Black Nurses Assoc, 20(20), 20 24. Thompson, H., & Brooks, M. (2010). Genetics and genomics in nursing: Evaluation of essentials implementation. Nurs Edu Today, 31, 623 627. University of Cincinnati. (2009). Genetics education program for nurses. Retrieved from http://www.cincinnatichildrens.org/ed/ clinical/gpnf/default.htm. Warshauer-Baker, E., Bonham, V., Jenkins, J., Stevens, N., Page, Z., Odunlami, A., & McBride, C. (2008). Family physicians beliefs about genetic contributions to racial/ethnic and gender differences in health and clinical decision-making. Community Genetics, 11(6), 352 358. Oncology Nursing Society 37th Annual Congress 67
Whitt, K.J. (2005). Experiences from the National Institute of Nursing Research: Summer Genetics Institute 2004. Policy, Politics, and Nursing Practice, 6(1), 15 16. Williams, K., Reiter, P., Mabiso, A., Marer, J., & Paskett, E. (2009). Family history of cancer predicts papanicolaou screening behavior for African American and white women. Cancer, Jan 1, 179 189. Yucha, D., & Wiss, M. (2009). The evolving contribution of nurse researchers to genetics, as seen through the prism of Biological Research for Nursing. Biological Research for Nursing, 10, 201 204. Web sites: CDC Genomics and Health Impact Update: www.cdc.gov/genomics/update/current.htm Genetics/Genomics Competency Center for Education (G2C2): http://www.g-2-c-2.org Genetic and Genomic Nursing: Competencies, Curricula Guidelines and Outcome Indicators, 2nd Edition: http://www.genome.gov/27527634 Genetic and Rare Diseases Information Center (GARD): http:// rarediseases.info.nih.gov/gard/ Genetics and Your Practice: http://www.marchofdimes.com/gyponline/index.bm2 Genetics Home Reference: http://ghr.nlm.nih.gov GeneTests/Gene Reviews: http://www.genetests.org Genetics is Relevant Now: Nurses Views and Patient Stories: http://www.cincinnatichildrens.org/education/clinical/nursing/ genetics/instruction/now/ Genomics and Disease Prevention: http://www.cdc.gov/genomics/ Genetics, Health, and Society: http://oba.od.nih.gov/sacghs/ sacghs_home.html Global Genetics and Genomics Community: http://www.g-3-c.org International Society of Nurses in Genetics: http://www.isong.org National Cancer Institute: http://www.cancer.gov/cancertopics/ prevention-genetics-causes National Coalition for Health Professional Education in Genetics (NCHPEG): http://www.nchpeg.org/ National Institute of Nursing Research Summer Genetics Institute: http://www.ninr.nih.gov/training/trainingopportunities- Intramural/SummerGeneticsInstitute/ Pediatric Genetics (CDC): http://www.cdc.gov/ncbddd/pediatricgenetics/ Pharmacogenomics Education Program: http://pharmacogenomics.ucsd.edu/ President s Commission on Bioethics: http://bioethics.gov SACGHS Report on Genetics Education and Training: http:// oba.od.nih.gov/oba/sacghs/reports/sacghs_education_report_2011.pdf Teaching Genetics: Genetic Science Learning Center: http://teach. genetics.utah.edu/ Telling Stories: Understanding Real Life Genetics: http://www. tellingstories.nhs.uk/ Walking in my shoes: http://www.dnaandu.org 68 Oncology Nursing Society 37th Annual Congress
Introduction Basic Genetics DNA deoxyribonucleic acid Gene unit of genetic material located on chromosome Genotype genetic identity of the individual Phenotype observable traits Mutation change in the normal gene sequence Single gene disorders caused by a gene mutation (i.e. BRCA1, BRCA2, MLH1, MSH2) Multifactorial caused by mutations on numerous genes and can be influenced by environmental factors (i.e., lymphoma) Basic Genetics Cont. Genetics study of individual genes and their impact on relatively rare single gene disorders Genomics study of all the genes in the human genome together, including their interactions with each other, the environment, and other psychosocial and cultural factors Cancer is a genetic disease at the level of the cell; DNA changes predispose to cancer, improve accuracy of diagnosis, influence treatment choices, and impact outcomes of care Emerging Genomic Technologies next generation genome sequencing towards personalized healthcare Genetic/Genomic Influences Across the Cancer Continuum Screening/Diagnosis Initiation/Prevention Risk Assessment Tumor Profiling Prognosis/ Targeted Treatment Disease Recurrence/ End of Life Application to Clinical Care Across the Nursing Profession CASE EXAMPLES Preimplantation Prenatal Carrier Testing Diagnostic testing/children Diagnostic testing/adult Onset Pharmacogenomics Research Repositories Recreational Ethical Considerations Direct to Consumer Testing Environmental Context Physical Occupational Emotional Sociocultural Religious Potential for discrimination Genetic Information Nondiscrimination Act. (GINA) What is GINA? (2008) A federal law that prevents health insurers and employers from discriminating based on an individual s genetic information The bill is intended to allow Americans to take advantage of the benefits of genetic testing without fear of losing their health insurance or their jobs http://www.genome.gov/10002328 Oncology Nursing Society 37th Annual Congress 69
Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics Define essential genetic and genomic competencies for ALL nurses regardless of level of academic preparation, practice setting or specialty. Prepare the nursing workforce to deliver competent nursing care in the genomic era of healthcare. What Does Genomic Nursing Competency Mean for You? Assessment Identification Referral Provision of education, care, and support Outcome Indicators Adjunct to the Essential Nursing Competencies Intended to define for each competency Specific areas of knowledge Clinical performance indicators Specific Areas of Knowledge Components of family history needed to identify disease susceptibility or genetic/genomic condition Standard pedigree nomenclature Type of information that needs to be collected and recorded such as: Disease and age of onset, ethnicity, both maternal and paternal lineages Three generations Existing family history tools Clinical Performance Indicators Collect a client s personal and three generation family health history to assess for genomic factors that impact the client s health. Consensus Panel on Genetic/Genomic Nursing Competencies (2009). Genetic and Genomic Nursing: Competencies, Curricula Guidelines and Outcome Indicators, 2nd Edition Silver Spring, MD: American Nurses Association. http://www.genome.gov/27527634 Advanced Practice Nurses Essential Genetic and Genomic Competencies for Nurses With Graduate Degrees. The document is currently in the final stages of the publication process. To be posted American Nurses Association (ANA) NursingWorld, Ethics webpage soon! Genetics and Genomics in Oncology Nursing Practice Calzone, K., Masny, A., & Jenkins, J. (2010) General Oncology Nurse (GON) GON with genetics subspecialty Advanced Practice Oncology Nurse (APON) APON with genetics subspecialty Genomic Nursing Competency Ongoing advances affect all aspects of cancer care (Position statements at www.ons.org) Cancer predisposition genetic testing and risk assessment (2009) The role of the oncology nurse in cancer genetic counseling (2009) Direct to consumer marketing of genetic and genomic tests (2010) 70 Oncology Nursing Society 37th Annual Congress
Genetics/Genomics Competency Center (G2C2): Online Education Repository for Educators http://www.g 2 c 2.org What does genomic competency mean for you? http://www.dnaandu.org http://g 3 c.org Wallen, G. et al. (2011). Evaluating a hybrid web based basic genetics course for health professionals. Nurse Education Today, 31(6): 638 642. jean.jenkins@nih.gov 1 Walking in My Shoes http://www.dnaandu.org http://g 3 c.org Wallen, G. et al. (2011). Evaluating a hybrid web based basic genetics course for health professionals. Nurse Education Today, 31(6): 638 642. jean.jenkins@nih.gov; 301 496 4601 Incorporating Genetics and Genomics into existing curriculum Oncology Education Series Introduction to Oncology Care Pathophysiology of Cancer Diagnosis and Staging of Cancer Concepts, Trends and Care Major cancers ONS Chemotherapy/ Biotherapy Course ONS Online Blood and Marrow Transplant Course Advanced Oncology Education Series Cancer Genetics & Genomics: Laying a Foundation for Cancer Genetics Competency Importance of Genetics/Genomics in Cancer Nursing Overview of Basic Genetics and Genomics Genetic Risk Assessment/Screening Pharmacogenetic/Pharmacogenomic Testing Ethical/Legal and Social Issues in Genetics Research Activities Incorporating Genetics Incorporating Genetics Competencies into Nursing Practice Oncology Nursing Internship Program Basic Genetics Lecture Advanced Genetics lecture Oncology Education Series ONS Online Cancer Genetics Course Pilot G3C Case Studies Oncology Nursing Society 37th Annual Congress 71
Exploring the Effectiveness of a WEB Based Genetics Education Program for Health Care Providers Gwenyth R. Wallen, PhD, RN Linda McCullagh, MPH, RN Jan Yates, PhD, RN Paul Hoernes, BA Suzan Parada, BSN, RN Donna Krasnewich, MD, PhD Deloris E. Koziol, PhD Tannia Cartledge, MA, RNC Basic Genetics for Health Care Providers 7 self paced WEB modules 7 1 hour monthly lectures by genetics experts Monthly test your understanding questions E classroom available for discussion Participant support by majordomo 24/7 Web Based Education Experience Genetics Education Experience 8.7% 22.8 % 10.2 % 6.3% 22.8% 31.5% 11.0 % 8.7% 5.5% 22.0% 40.9% 14 participants (11.0%) reported receiving any formal course work in genetics Resources http://www.dnaandu.org http://g 3 c.org Wallen, G. et al. (2011). Evaluating a hybrid web based basic genetics course for health professionals. Nurse Education Today, 31(6): 638 642. jean.jenkins@nih.gov Evaluation of the Integration of Genetics and Genomics into Nursing Practice Kathleen Calzone, MSN, RN, APNG, FAAN Jean Jenkins, PhD, RN, FAAN Jan Yates, PhD, RN Georgie Cusack, MS, RN, AOCN Colleen McBride, PhD Seth Steinberg, PhD 72 Oncology Nursing Society 37th Annual Congress
Multi Institute Funding National Institutes of Health National Cancer Institute National Institute of Nursing Research National Human Genome Research Institute Clinical Center Specific Aims Pilot test a survey instrument assessing attitudes, practices, receptivity, confidence and competency of the nursing workforce integrating genetic and genomics information related to common multi factorial diseases in preparation for a national nursing workforce survey. Determine the feasibility of an online survey method of data collection. Evaluate the degree of respondent burden and survey response rates to establish whether this method of data collection will be adequate for the future evaluations. Specific Aims Conclusion Compare nursing attitudes, practices, receptivity, confidence and competency in integrating genetic and genomic information to family physicians. Majority of respondents had a limited understanding of genetics/genomics Respondents tend to be less innovative Most respondents were unaware of the Essential Competencies Majority felt genetics and genomics was important to nursing practice Conclusion The majority of respondents do not incorporate family history into their practice The instrument was easy to complete and the online methodology was easy to navigate Response rate per question varied widely Hypothesis: Concern about genetic/genomic competency influenced per question response rate Oncology Nurse Internship Project Development and implementation of Genetic Competencies Attended ISONG Meeting Networked with leaders in cancer genetics Utilized essential nursing competencies with outcomes to develop competencies for Clinical Center Nursing Department Will pilot competencies in oncology program of care in 2012 Oncology Nursing Society 37th Annual Congress 73
NIH Initiatives Institutional Review Boards Standardized language regarding biospecimens and informed consents that have a genetic component Dr Francis Collins Director of the National Institutes of Health NHGRI Initiatives NCI Initiatives NHGRI Genomics in Medicine Lecture Series The Human Genome and individualized medicine An introduction to genomics: breast cancer genes, risk assessment and screening An introduction to genomics: breast cancer diagnosis and treatment What's bugging you? The intersection of genomics and infectious disease The heart of the matter: genomics and cardiovascular disease Rational therapeutics for genetic conditions Genomics in maternal child health G3C Interactive Unfolding Case Studies http://www.dnaandu.org http://g 3 c.org Wallen, G. et al. (2011). Evaluating a hybrid web based basic genetics course for health professionals. Nurse Education Today, 31(6): 638 642. jean.jenkins@nih.gov Future Initiatives Pilot genetics competency in oncology program of care Collaborate to develop mechanism for collecting family history (database?) 74 Oncology Nursing Society 37th Annual Congress