Genetics

1. Genetics/Genomics Nursing Competency: Implications for Education, Practice and Research

2. Definitions 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

3. Overview of the Session Relevance of Genetics and Genomics to Nursing Practice The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics Competency Outcome Indicators Genetics/Genomics and AACN Baccalaureate Essentials Models of Genetic and Genomic Curriculum Integration Resources for Nursing Educators Implications for Nursing Research Discussion/Questions and Answers

5. Nursing Population There are more than 2,900,000 nurses as of March 2004 2,915,309 current licenses to practice as registered nurses 2,421,351 employed in nursing 1,360,847 in a hospital setting

6. Nursing Background Genetic and genomic content is not consistently incorporated into 2007 NCLEX-RN� Detailed Test Plan Examination to evaluate entry-level nursing competence of candidates for licensure as registered nurses Perform health history/health and risk assessments (e.g., lifestyle, family and genetic history) A systematic evaluation of genetic/genomic content in post registered nurse NCLEX certification examinations has not been completed

7. Barriers to Incorporating Genetics and Genomics into Nursing Curricula

8. Estimated Curricular Time Spent on Genetic Content Categories

25. Goal of Personalized Medicine

27. People vary in their response to a prescribed medication, both with respect to how well it works and to adverse side effects. People vary in their response to a prescribed medication, both with respect to how well it works and to adverse side effects.

28. Scientists, physicians and the pharmaceutical industry are actively developing ways to customize medical treatments to suit our unique genetic signatures. This emerging science is called personalized medicine. Scientists, physicians and the pharmaceutical industry are actively developing ways to customize medical treatments to suit our unique genetic signatures. This emerging science is called personalized medicine.

32. Emergency Department Visits Centers for Disease Control National ED Surveillance 2004-2005 Adverse drug events (ADE) defined as undesirable pharmacologic or idiosyncratic effects from medications administered at correct dosages. ADE�s accounted for > 200,000 ED visits ADE�s accounted for > 36,000 hospitalizations Among individuals >65 y/o 17.3% of ED visits were associated with ADE�s from warfarin.

33. Environment and personal factors play a role in individual variation Variations in our genes are not the only thing that make us who we are. Environmental effects like how much we exercise, what we eat, who our friends are and exposure to toxins play a big role in shaping our individuality.Variations in our genes are not the only thing that make us who we are. Environmental effects like how much we exercise, what we eat, who our friends are and exposure to toxins play a big role in shaping our individuality.

34. Direct to Consumer Marketing

35. Direct to Consumer Marketing 23andMe 23andme launched directly to consumers in December 2007. Saliva Sample. Evaluating nearly 600,00 SNP�s for 90 health conditions $399.

36. Time�s Best Inventions of 2008 October 30, 2008 � TIME Magazine announced that the Personal Genome Service� from 23andMe, Inc. has been named 2008's Invention of the Year.

37. How Prevalent is the Uptake?

38. Availability of Genetic and Genomic Testing Prenatal diagnosis Carrier testing Confirmation of a genetic diagnosis Genetic susceptibility Disease screening/diagnosis Pharmacogenomic Disease profiling

39. The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics Define essential genetic and genomic competencies for ALL nurses regardless of level of academic preparation, practice setting or specialty. Guide curriculum content based on the current state of the evidence. Provide the basis for evaluating nurse competence in genetics and genomics including: NCLEX Certification Maintaining Licensure Prepare the nursing workforce to deliver competent nursing care in the genomic era of healthcare.

40. Organizational Partnerships Established partnership with key organizations Health Resources and Services Administration American Nurses Association Centers for Disease Control National Institute of Nursing Research

41. Competency Framework Consistent with existing competencies and Scope/Standards of Practice Applicable to all nurses regardless of academic preparation, role, specialty Focus on genetics AND genomics Clients considered persons, families, communities and/or populations Written consistent with Bloom�s Taxonomy

42. Competency Development Identified, analyzed, reviewed and compared available peer reviewed published work reporting practice-based genetic and genomic competencies, guidelines, and recommendations. Competencies drafted, reviewed, modified and approved by a Steering Committee. Competencies reviewed and modified by nurse representatives to the National Coalition for Health Professional Education in Genetics (NCHPEG) in January, 2005. Public comment was solicited with revisions incorporated.

43. Consensus Meeting September 21-22, 2005

44. Essential Competencies Two Domains Professional Responsibilities Professional Practice Assessment Identification Referral Provision of Education, Care & Support

45. Professional Responsibilities Recognize when one�s own attitudes and values related to genetic and genomic science may affect care provided to clients Advocate for clients access to desired genetic/genomic services and/or resources Examine competency of practice on a regular basis, identifying areas of strength, as well as areas in which professional development related to genetics and genomics would be beneficial Incorporate genetic and genomic technologies and information into registered nurse practice Demonstrate in practice the importance of tailoring genetic and genomic information and services to clients based on their culture, religion, knowledge level, literacy and preferred language Advocate for the rights of all clients for autonomous, informed genetic and genomic related decision-making and voluntary action

46. Assessment The registered nurse: Demonstrates an understanding of the relationship of genetics/genomics to health, prevention, screening, diagnostics, prognostics, selection of treatment, and monitoring of treatment effectiveness Demonstrates ability to elicit a minimum of three generation family health history information Constructs pedigree from collected family history information using standardized symbols and terminology

47. Assessment, continued Collects personal, health and developmental histories that consider genetic, environmental, and genomic influences and risks Conducts comprehensive health and physical assessments that incorporates knowledge about genetic, environmental, and genomic influences and risk factors Critically analyzes the history and physical assessment findings for genetic, environmental, and genomic influences and risk factors Assesses clients� knowledge, perceptions, and responses to genetic and genomic information Develops plan of care that incorporates genetic and genomic assessment information

48. Provision of Education, Care & Support The registered nurse: Provides clients with interpretation of selective genetic and genomic information or services Provides clients with genetic and genomic credible, accurate, appropriate and current information, resources, services and/or technologies that facilitate decision-making Uses health promotion/disease prevention practices that: Considers genetic and genomic influences on risk with personal and environmental risk factors Incorporates knowledge of genetic and/or genomic risk factors (e.g., a client with a genetic predisposition for high cholesterol that can benefit from a change in lifestyle that will decrease the likelihood that the genetic risk will be expressed) Uses genetic and genomic-based interventions and information to improve clients� outcomes

49. Provision of Education, Care & Support, Continued Collaborates with healthcare providers in providing genetic and genomic health care Collaborates with insurance providers/payers to facilitate reimbursement for genetic and genomic health care services Performs interventions/treatments appropriate to clients� genetic and genomic health care needs Evaluates impact and effectiveness of genetic and genomic technology, information, interventions, and treatments on clients� outcome

50. Identification The registered nurse: Identifies clients who may benefit from specific genetic and genomic information and/or services based on assessment data Identifies credible, accurate, appropriate and current genetic and genomic information, resources, services and/or technologies specific to given clients Identifies ethical, ethnic/ancestral, cultural, religious, legal, fiscal, and societal issues related to genetic and genomic information and technologies Defines issues that undermine the rights of all clients for autonomous, informed genetic and genomic-related decision-making and voluntary action

51. Referral The registered nurse: Facilitates referrals for specialized genetic and genomic services for clients as needed

52. Endorsement Status 49 organizations have endorsed including American Academy of Nursing American Association of Colleges of Nursing American Nursing Association American Nurses Credentialing Center International Society of Nurses in Genetics National Coalition for Health Professional Education in Genetics National League for Nursing National League for Nursing Accrediting Commission Oncology Nursing Society Sigma Theta Tau Southern Regional Education Board Council on Collegiate Education for Nursing Unsolicited, endorsements have been received from schools of nursing

53. Outcome Indicators Adjunct to the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics Intended to define for each competency Specific areas of knowledge Clinical performance indicators

54. A Short Story

55. �It�s one of those times in your life that you are grateful you had the knowledge.� Quote from: Barbara Ganster, RN, BSN Breast Cancer Case Manager National Naval Medical Center November 19, 2008

56. Questions