Genetics/Genomics Nursing Competency:  Implications  for Education, Practice and Research Kathleen Calzone, MSN, RN, APNG,...
Genetics Curriculum Checklist <ul><li>Determine existing genetics/genomics content </li></ul><ul><ul><li>Survey and/or vis...
Models Of Genetic/Genomic  Curriculum Integration <ul><li>Five year plan at Boston College School of Nursing - interest gr...
Boston Survey Results <ul><li>100% response rate </li></ul><ul><li>Genetics is integrated into the nursing curriculum </li...
Follow-up To Survey Recommendations <ul><li>Personal knowledge base development </li></ul><ul><li>Incorporate principles w...
Outcomes <ul><li>Mandates: Essentials; NCLEX </li></ul><ul><li>Recognition that everyone does not have to be a genetics ex...
Summary <ul><li>Takes time </li></ul><ul><li>Requires communication </li></ul><ul><li>Requires commitment </li></ul><ul><l...
Genetics Curriculum Checklist  (Hetteberg & Prows, 2004) <ul><li>Increase faculty awareness about need to include genetics...
Faculty Awareness <ul><li>Exemplar: Johns Hopkins School of Nursing  Sharon Olsen “Champion role” </li></ul><ul><li>Shares...
Johns Hopkins Cont. <ul><li>Example: Health assessment course </li></ul><ul><ul><li>Lecture and lab on family history/pedi...
Family History Resources and Tools <ul><li>American Medical Association  www.ama-assn.org   </li></ul><ul><li>Centers for ...
Johns Hopkins Cont. <ul><li>Genetics is a large focus of public health courses offered at JHSON </li></ul><ul><li>Nurses t...
Genetics Curriculum Checklist  (Hetteberg & Prows, 2004) <ul><li>Increase faculty knowledge about genetics </li></ul><ul><...
Faculty Champions   <ul><li>Faculty Support </li></ul><ul><li>Share expertise through-out curriculum </li></ul><ul><ul><li...
Genetics Curriculum Checklist  (Hetteberg & Prows, 2004) <ul><li>Integrate genetic content in nursing curriculum </li></ul...
Stand Alone Course <ul><li>Exemplar: University of Pittsburgh  Yvette Conley </li></ul><ul><li>Full 3 credit course is req...
Stand Alone Course <ul><li>Exemplar:  Emory  Lynette Wright </li></ul><ul><li>Required course for all students </li></ul><...
Emory University Cont. <ul><ul><li>KEY: faculty that feel committed to genetics </li></ul></ul><ul><ul><li>Important to pr...
Genetics Curriculum at The University of Iowa <ul><li>Exemplar: Janet Williams </li></ul><ul><li>UI uses an integrated mod...
Genetics Curriculum at The University of Iowa <ul><li>Example-Undergraduate content taught by course faculty </li></ul><ul...
Genetics Curriculum at The University of Iowa <ul><li>Example- Undergraduate content taught by genetics nursing content ex...
Genetics Curriculum at The University of Iowa <ul><li>Benefits </li></ul><ul><ul><li>Faculty with genetic nursing expertis...
Genetics Curriculum at The University of Iowa <ul><li>Benefits </li></ul><ul><ul><li>Dean support of importance of genetic...
Genetics Curriculum at The University of Iowa <ul><li>What’s challenging </li></ul><ul><ul><li>Keeping up with the scope o...
Interdisciplinary  Education Consortium Outcome  Indicators Faculty Toolkit Essential Competencies
Tool Kit <ul><li>9/14/07 meeting was held in collaboration with AACN. Recommendation: A Toolkit is needed. </li></ul><ul><...
Tool Kit <ul><li>Consider varied methodologies to offer valuable genetic/genomic resources </li></ul><ul><li>Second meetin...
Tool Kit <ul><li>Identified and peer reviewed resources </li></ul><ul><li>Mapped available resources to specific knowledge...
Nursing/PA/UVA Collaboration
Education Repository
Faculty/Staff Development   <ul><li>NCHPEG  www.nchpeg.org   </li></ul><ul><li>Cincinnati Children’s Hospital Web Based Ge...
Resources <ul><li>Textbooks (Jenkins & Lea, 2005; Lashley, 2005 & 2007; Calzone, Masny, Jenkins, in press) </li></ul><ul><...
Norton Publishers (WW Norton & Company) 2006
Clinical Resources <ul><li>Stories-UK:  http://www.geneticseducation.nhs.uk/ tellingstories/index.asp </li></ul><ul><li>Ge...
Genetics and Genomics for Health Professionals – New NHGRI Web Resource <ul><li>reliable, up-to-date genetics and genomics...
Consequences (Jenkins Dissertation 1999) <ul><li>Predicted consequences of genetics nursing education n=398 </li></ul><ul>...
Consequences Of Genetics Nursing Education <ul><ul><li>CHALLENGES </li></ul></ul><ul><li>“ a little knowledge could be dan...
Consequences Of Genetics/ Genomics Education for Practice <ul><li>Knowledge </li></ul><ul><li>Referrals </li></ul><ul><li>...
Public Perception <ul><li>Main concern of consumer:   </li></ul><ul><li>What can be done to improve the outcome of my heal...
What is GINA? <ul><li>A federal law (passed 2008) that prevents health insurers and employers from discriminating based on...
What will GINA do? <ul><li>Prohibit health insurers from requesting or requiring genetic information of an individual or t...
GINA’s Core Protections <ul><li>Genetic testing and genetic information that reveals an increased risk of future disease, ...
GINA does NOT cover <ul><li>Manifest disease – someone who is already sick </li></ul><ul><li>Use of genetic information in...
Now what? <ul><li>Regulations being drafted to implement GINA </li></ul><ul><li>12 month deadline </li></ul><ul><li>Insura...
Genetics Legislation, Guidelines and Policies <ul><li>National Human Genome Research Institute: Policy and Ethics  www.gen...
American Academy of Nursing: Genetics and Genomics Nursing White Paper <ul><li>Purpose: To educate policymakers, the media...
  Prepare   NURSES NOT ONLY FOR THE  NEEDS OF TODAY, BUT ALSO FOR THE UTILIZATION OF GENOMIC ADVANCES IN THE HEALTH CARE O...
Competency: Research <ul><li>Evaluates impact and effectiveness of genetic and genomics technology, information, intervent...
Quality Oversight <ul><li>FDA </li></ul><ul><ul><li>Test Kits </li></ul></ul><ul><ul><li>Drug Labeling </li></ul></ul><ul>...
Additional Information & Reviews available at  www.egappreviews.org
Personal/Professional Perspective <ul><li>SEMINARS IN ONCOLOGY NURSING, 2006, 22(2), 117-125 </li></ul><ul><li>Example  </...
Building Blocks <ul><li>Progress </li></ul><ul><li>Healthcare  </li></ul><ul><li>Professionals </li></ul><ul><li>Healthcar...
Thank you <ul><li>jean.jenkins @nih. gov </li></ul><ul><li>301-496-4601 </li></ul>
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  • MARKETING SURVEY – MORE RECEPTIVE TO GENETIC TESTS THAN PREVIOUSLY BELIEVED. 81% SAID THEY BELIEVED GENETIC TESTING WOULD BE BENEFICIAL TO THEM. MORE THAN HELF OF THE 1013 ADULTS WHO RESPONDED TO THE POLL SAID THEY WOULD BE VERY LIKELY TO TAKE A G.T THAT WOULD INFORM THEM OF THEIR RISK FOR SEVERAL MAJOR DX. About half would be tested to determine what medication would be most approriate for them (www.amersham,com) Direct marketing to the consumer Genetic testing oversight – like herbal remedies, not monitored On websites
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    1. 1. Genetics/Genomics Nursing Competency: Implications for Education, Practice and Research Kathleen Calzone, MSN, RN, APNG, FAAN National Cancer Institute, NIH and Jean Jenkins, PhD, RN, FAAN National Human Genome Research Institute, NIH
    2. 2. Genetics Curriculum Checklist <ul><li>Determine existing genetics/genomics content </li></ul><ul><ul><li>Survey and/or visit with faculty-course content </li></ul></ul><ul><ul><li>Determine and/or assist faculty to determine gaps in pre-requisite courses </li></ul></ul><ul><ul><li>Determine and/or assist faculty to determine gaps in nursing courses </li></ul></ul><ul><ul><li>Exemplar: Read, C. et al. (2004). J of Nsg Ed, 43(8), 376-380. </li></ul></ul>Hetterberg, C., Prows, C. (2004). A checklist to assist in the integration of genetics into nursing curricula. Nursing Outlook. 52, 85-88.
    3. 3. Models Of Genetic/Genomic Curriculum Integration <ul><li>Five year plan at Boston College School of Nursing - interest group 2001 </li></ul><ul><li>2003 & 2008 conducted a curriculum survey of lead course faculty for 20 required courses </li></ul><ul><li>to determine genetics content </li></ul><ul><li>Framework of competencies ( http://www.nchpeg.org ) </li></ul>
    4. 4. Boston Survey Results <ul><li>100% response rate </li></ul><ul><li>Genetics is integrated into the nursing curriculum </li></ul><ul><li>Most (>50%): terminology, genetic variation and clinical care, family history, privacy, autonomy, and cultural identity </li></ul><ul><li>Least (<20%): indications for referral, misuses of genetic information, dissemination of information about policy issues </li></ul>
    5. 5. Follow-up To Survey Recommendations <ul><li>Personal knowledge base development </li></ul><ul><li>Incorporate principles whenever possible </li></ul><ul><li>Select texts with genetics content </li></ul><ul><li>Use internet and local genetics resources </li></ul><ul><li>Select clinical experiences that demonstrate genetics concerns </li></ul>
    6. 6. Outcomes <ul><li>Mandates: Essentials; NCLEX </li></ul><ul><li>Recognition that everyone does not have to be a genetics expert to include content in curriculum (i.e., molecular genetics) </li></ul><ul><li>Providing a separate genetics course was first idea/rejected </li></ul><ul><li>Incorporation became an expectation of all staff (i.e., objectives, content, assignments ) </li></ul>
    7. 7. Summary <ul><li>Takes time </li></ul><ul><li>Requires communication </li></ul><ul><li>Requires commitment </li></ul><ul><li>Use what is out there! </li></ul><ul><li>Remove the fear factor-none of us is truly “expert” </li></ul><ul><li>More confidence makes it possible </li></ul><ul><li>(Exemplar: Cathy Read) </li></ul>
    8. 8. Genetics Curriculum Checklist (Hetteberg & Prows, 2004) <ul><li>Increase faculty awareness about need to include genetics </li></ul><ul><ul><li>Share/discuss relevant documents </li></ul></ul><ul><ul><ul><li>Essentials of BSN Education http://www.aacn.nche.edu </li></ul></ul></ul><ul><ul><ul><li>ISONG/ANA Scope and Standards http://www.isong.org </li></ul></ul></ul><ul><ul><ul><li>Essential Nursing Competencies http://www.genome.gov/17517037 </li></ul></ul></ul><ul><ul><li>Review ways to integrate into curriculum </li></ul></ul><ul><ul><li>Inform of available resources </li></ul></ul><ul><ul><li>Provide exemplars of others success </li></ul></ul>
    9. 9. Faculty Awareness <ul><li>Exemplar: Johns Hopkins School of Nursing Sharon Olsen “Champion role” </li></ul><ul><li>Shares personal expertise through-out curriculum </li></ul><ul><ul><li>Introductory courses, Trends & Issues, Health assessment, Pathophys, Elective in oncology </li></ul></ul><ul><ul><li>Across the life span; Role of nurses </li></ul></ul><ul><li>Provides updates to faculty colleagues </li></ul><ul><ul><li>Bulletin board </li></ul></ul><ul><ul><li>Listserv materials; resources (PDF Competencies) </li></ul></ul>
    10. 10. Johns Hopkins Cont. <ul><li>Example: Health assessment course </li></ul><ul><ul><li>Lecture and lab on family history/pedigree </li></ul></ul><ul><ul><li>IT resources assisted in video on how to draw pedigree based on standards </li></ul></ul><ul><ul><li>Required to collect on all patients and analyze for risks of disease-students as teachers </li></ul></ul><ul><ul><li>Across the lifespan </li></ul></ul><ul><ul><li>Biggest challenge: EMR with family history not in hospital setting/DISCONNECT </li></ul></ul>
    11. 11. Family History Resources and Tools <ul><li>American Medical Association www.ama-assn.org </li></ul><ul><li>Centers for Disease Control and Prevention National Office for Public Health Genomics www.cdc.gov/genomics </li></ul><ul><li>U.S. Surgeon General’s Family History Initiative www.hhs.gov/familyhistory </li></ul>
    12. 12. Johns Hopkins Cont. <ul><li>Genetics is a large focus of public health courses offered at JHSON </li></ul><ul><li>Nurses take elective courses within those programs </li></ul><ul><li>Shared courses/Shared expertise </li></ul><ul><li>Scholarly project-”Genetic Boxes” </li></ul>
    13. 13. Genetics Curriculum Checklist (Hetteberg & Prows, 2004) <ul><li>Increase faculty knowledge about genetics </li></ul><ul><ul><li>Provide genetic informational/educational opportunities such as: </li></ul></ul><ul><ul><ul><li>Faculty development series </li></ul></ul></ul><ul><ul><ul><li>Brown bag lunch discussions </li></ul></ul></ul><ul><ul><ul><li>Workshops </li></ul></ul></ul><ul><ul><ul><li>Journal club </li></ul></ul></ul><ul><ul><ul><li>Professional organizations </li></ul></ul></ul><ul><ul><ul><li>Champions </li></ul></ul></ul>
    14. 14. Faculty Champions <ul><li>Faculty Support </li></ul><ul><li>Share expertise through-out curriculum </li></ul><ul><ul><li>Consult with individual faculty to provide assistance in integrating genetics/ genomics into existing coursework </li></ul></ul><ul><ul><li>Serve as a faculty resource </li></ul></ul><ul><li>Link to genetic/genomic experts </li></ul>
    15. 15. Genetics Curriculum Checklist (Hetteberg & Prows, 2004) <ul><li>Integrate genetic content in nursing curriculum </li></ul><ul><ul><li>Funding; resources: genetics professionals </li></ul></ul><ul><ul><li>Develop/add genetics-related objectives, content, assignments, test questions, extra credit assignment </li></ul></ul><ul><ul><li>Add/assist in adding content, assignments, test questions to faculty courses </li></ul></ul><ul><ul><li>Develop a new elective course focused on genetics; develop a new required course </li></ul></ul>
    16. 16. Stand Alone Course <ul><li>Exemplar: University of Pittsburgh Yvette Conley </li></ul><ul><li>Full 3 credit course is required of all undergraduate nursing students (2001) </li></ul><ul><li>Introduction to genetics & molecular therapeutics </li></ul><ul><li>Also available at graduate level/add EBP </li></ul><ul><li>www.nursing.pitt.edu doctoral program brochure genomics </li></ul>
    17. 17. Stand Alone Course <ul><li>Exemplar: Emory Lynette Wright </li></ul><ul><li>Required course for all students </li></ul><ul><ul><li>3 hr course for senior undergrads </li></ul></ul><ul><ul><li>2 hr course for all masters students </li></ul></ul><ul><ul><li>Not practical for all programs </li></ul></ul><ul><ul><li>Encourage interdisciplinary course </li></ul></ul>
    18. 18. Emory University Cont. <ul><ul><li>KEY: faculty that feel committed to genetics </li></ul></ul><ul><ul><li>Important to provide faculty updates (<fear) </li></ul></ul><ul><ul><li>Include biology in early courses. Build on it for clinical application “just like other nursing courses” </li></ul></ul><ul><ul><li>Problem based: science; condition; impact; ethical, legal, social implications </li></ul></ul><ul><ul><li>Take home exams with clinical scenarios </li></ul></ul><ul><ul><li>Small group projects/poster days </li></ul></ul>
    19. 19. Genetics Curriculum at The University of Iowa <ul><li>Exemplar: Janet Williams </li></ul><ul><li>UI uses an integrated model and human genetics elective course </li></ul><ul><ul><li>Content throughout courses </li></ul></ul><ul><ul><li>Online human genetics course </li></ul></ul><ul><ul><ul><li>Enrollment includes UI ug students, UI grad students, practicing nurses, nurse faculty from other programs </li></ul></ul></ul><ul><ul><ul><li>Taught by genetics nursing faculty </li></ul></ul></ul>
    20. 20. Genetics Curriculum at The University of Iowa <ul><li>Example-Undergraduate content taught by course faculty </li></ul><ul><ul><li>Issues in Nursing -Senior level course, includes ethics principles </li></ul></ul><ul><ul><li>Ethical Issues CD-Rom from UI </li></ul></ul><ul><ul><li>[email_address] </li></ul></ul><ul><ul><li>Case studies on genetic testing that presents ethics issues and discussion questions </li></ul></ul>
    21. 21. Genetics Curriculum at The University of Iowa <ul><li>Example- Undergraduate content taught by genetics nursing content expert </li></ul><ul><ul><li>Human Growth and Development course for pre-nursing students </li></ul></ul><ul><ul><ul><li>guest lecture on genetic influences of growth, development, and health of children </li></ul></ul></ul><ul><ul><ul><li>guest lecture on genetic influences of growth, development, and health of adults </li></ul></ul></ul>
    22. 22. Genetics Curriculum at The University of Iowa <ul><li>Benefits </li></ul><ul><ul><li>Faculty with genetic nursing expertise </li></ul></ul><ul><ul><li>Clinical colleagues from nursing, genetic counseling, public health, medicine, with genetics expertise and interest in clinical teaching </li></ul></ul><ul><ul><li>Offer independent study experiences to ug students with nursing faculty, some students include clinical experiences in specialty clinics </li></ul></ul>
    23. 23. Genetics Curriculum at The University of Iowa <ul><li>Benefits </li></ul><ul><ul><li>Dean support of importance of genetics in the profession of nursing to meet health care challenges </li></ul></ul><ul><ul><li>More students enter BSN program with strong science preparation, are familiar with genetics concepts “younger students get it; not intimidated” </li></ul></ul><ul><ul><li>Student enthusiasm for genetics application in nursing practice “find it exciting and expect it” </li></ul></ul>
    24. 24. Genetics Curriculum at The University of Iowa <ul><li>What’s challenging </li></ul><ul><ul><li>Keeping up with the scope of genetics application across all populations and clinical settings </li></ul></ul><ul><ul><li>Keeping up with resources to support application of genetics and genomics in nursing curricula </li></ul></ul><ul><ul><li>Changing faculty </li></ul></ul>
    25. 25. Interdisciplinary Education Consortium Outcome Indicators Faculty Toolkit Essential Competencies
    26. 26. Tool Kit <ul><li>9/14/07 meeting was held in collaboration with AACN. Recommendation: A Toolkit is needed. </li></ul><ul><li>Utilize learning outcomes and practice indicators to select what to include. </li></ul><ul><li>Content must illustrate: </li></ul><ul><ul><li>Relevancy for nurses; </li></ul></ul><ul><ul><li>Identify the right skills; </li></ul></ul><ul><ul><li>Be realistic in the expected outcomes; </li></ul></ul><ul><ul><li>and offer Champions for consultation . </li></ul></ul>
    27. 27. Tool Kit <ul><li>Consider varied methodologies to offer valuable genetic/genomic resources </li></ul><ul><li>Second meeting held 6/24-6/25/08 </li></ul><ul><li>Learned from experiences of others (UK) </li></ul><ul><li>Heard about what other disciplines offer; </li></ul><ul><li>Determined those components we had on our wish list to include: </li></ul><ul><ul><li>Clearinghouse (shopping cart) </li></ul></ul><ul><ul><li>Interactive (wiki) </li></ul></ul><ul><ul><li>Images/slides </li></ul></ul><ul><ul><li>Shareware </li></ul></ul>
    28. 28. Tool Kit <ul><li>Identified and peer reviewed resources </li></ul><ul><li>Mapped available resources to specific knowledge areas linked to competencies </li></ul><ul><li>Completed a resource gap analysis </li></ul><ul><li>Plan to establish an editorial board for ongoing maintenance of toolkit </li></ul><ul><li>Identified a vendor to build the toolkit </li></ul>
    29. 29. Nursing/PA/UVA Collaboration
    30. 30. Education Repository
    31. 31. Faculty/Staff Development <ul><li>NCHPEG www.nchpeg.org </li></ul><ul><li>Cincinnati Children’s Hospital Web Based Genetics Institute; Modules (web-based, self paced, free access and use); Genetics is Relevant Now (CE) www.gepn.cchmc.org </li></ul><ul><li>National Institute of Nursing Research Summer Genetics Institute ninr.nih.gov </li></ul><ul><li>International Society of Nurses in Genetics </li></ul><ul><li>www.isong.org </li></ul><ul><li>Oncology Nursing Society Short Course www.ons.org </li></ul><ul><li>Research Institution Training Programs </li></ul><ul><ul><li>Fox Chase Cancer Center; City of Hope </li></ul></ul>
    32. 32. Resources <ul><li>Textbooks (Jenkins & Lea, 2005; Lashley, 2005 & 2007; Calzone, Masny, Jenkins, in press) </li></ul><ul><li>Weblinks </li></ul><ul><li>References: </li></ul><ul><ul><li>Genetics articles in Nursing journals (JNS) & now an e-text from STTI </li></ul></ul>
    33. 33. Norton Publishers (WW Norton & Company) 2006
    34. 34. Clinical Resources <ul><li>Stories-UK: http://www.geneticseducation.nhs.uk/ tellingstories/index.asp </li></ul><ul><li>GeneTests www.genetests.org </li></ul><ul><li>Genetic Alliance www.geneticalliance.org </li></ul><ul><li>Genetics and Rare Diseases Information Center (GARD) www.genome.gov/10000409 </li></ul><ul><li>NCI www.cancer.gov </li></ul>
    35. 35. Genetics and Genomics for Health Professionals – New NHGRI Web Resource <ul><li>reliable, up-to-date genetics and genomics information related to patient management </li></ul><ul><li>curricular resources </li></ul><ul><li>new National Institutes of Health and NHGRI research activities </li></ul><ul><li>related ethical, legal and social issues </li></ul><ul><ul><li>http://www.genome.gov/Health/ </li></ul></ul>
    36. 36. Consequences (Jenkins Dissertation 1999) <ul><li>Predicted consequences of genetics nursing education n=398 </li></ul><ul><li>Themes: ADVANTAGES </li></ul><ul><li>“ the current paradigm of nursing will change” </li></ul><ul><li>“ greater access to genetic services and information” </li></ul><ul><li>“ nurses will be prepared for the incredible changes already occurring in health care” </li></ul>
    37. 37. Consequences Of Genetics Nursing Education <ul><ul><li>CHALLENGES </li></ul></ul><ul><li>“ a little knowledge could be dangerous” </li></ul><ul><li>“ to not provide this education to nurses means that nurses will not be able to participate on an interdisciplinary team that addresses genetic problems/illnesses” </li></ul><ul><li>“… most resources, such as textbooks are out of date as soon as published” </li></ul>
    38. 38. Consequences Of Genetics/ Genomics Education for Practice <ul><li>Knowledge </li></ul><ul><li>Referrals </li></ul><ul><li>Interpret </li></ul><ul><li>Patient Education </li></ul><ul><li>Ethics </li></ul><ul><li>Policy </li></ul>
    39. 39. Public Perception <ul><li>Main concern of consumer: </li></ul><ul><li>What can be done to improve the outcome of my health ? </li></ul><ul><li>Awareness, interest, </li></ul><ul><li>access, outcomes, </li></ul><ul><li>decisions, cost, fears of </li></ul><ul><li>discrimination </li></ul>
    40. 40. What is GINA? <ul><li>A federal law (passed 2008) that prevents health insurers and employers from discriminating based on an individual’s genetic information </li></ul><ul><li>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 </li></ul>
    41. 41. What will GINA do? <ul><li>Prohibit health insurers from requesting or requiring genetic information of an individual or their family members, or using it for decisions regarding coverage, rates, or preexisting conditions. </li></ul><ul><li>Prevents employers from using genetic information in decisions regarding hiring, firing, promotion or any other terms of employment (e.g., benefits) </li></ul><ul><li>The law specifically includes participation in research that includes genetic services (genetic testing, counseling, or education). </li></ul>
    42. 42. GINA’s Core Protections <ul><li>Genetic testing and genetic information that reveals an increased risk of future disease, such as breast and ovarian cancer, Alzheimer disease, colon cancer, Huntington disease </li></ul><ul><li>Family History </li></ul><ul><li>DNA or RNA based pharmacogenomic tests (i.e., cytochrome p450 testing by DNA chip) </li></ul>
    43. 43. GINA does NOT cover <ul><li>Manifest disease – someone who is already sick </li></ul><ul><li>Use of genetic information in regard to life, long-term care, or disability insurance </li></ul><ul><li>Members of the military </li></ul>
    44. 44. Now what? <ul><li>Regulations being drafted to implement GINA </li></ul><ul><li>12 month deadline </li></ul><ul><li>Insurance protections go into effect May 09 </li></ul><ul><li>Employment protections go into effect November 2009 </li></ul>
    45. 45. Genetics Legislation, Guidelines and Policies <ul><li>National Human Genome Research Institute: Policy and Ethics www.genome.gov/PolicyEthics/ </li></ul><ul><li>Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) www4.od.nih.gov/oba/sacghs.htm </li></ul><ul><li>Thomas—U.S. Congress on the Internet www.thomas.gov </li></ul>
    46. 46. American Academy of Nursing: Genetics and Genomics Nursing White Paper <ul><li>Purpose: To educate policymakers, the media and other professional health organizations about nurses’ role and impact on the emerging policy area of genetics and genomics. (Publication planned for 2009) </li></ul><ul><li>Addresses: </li></ul><ul><ul><li>Improving health outcomes by nurses who are competent in genetics and genomics.  Two concrete examples are included.  </li></ul></ul><ul><ul><li>Nursings role in genetics and genomics (current and projected). </li></ul></ul><ul><ul><li>An overview and comparison of what the U.S. and other countries are doing in genetics and genomics.  </li></ul></ul><ul><ul><li>An international perspective and highlight relevant points that can be used to inform U.S. policy issues. </li></ul></ul><ul><ul><li>Identifies current and future policy issues. </li></ul></ul>
    47. 47. Prepare NURSES NOT ONLY FOR THE NEEDS OF TODAY, BUT ALSO FOR THE UTILIZATION OF GENOMIC ADVANCES IN THE HEALTH CARE OF TOMORROW
    48. 48. Competency: Research <ul><li>Evaluates impact and effectiveness of genetic and genomics technology, information, interventions, and treatments on clients’ outcome. </li></ul><ul><li>A nalytic Validity </li></ul><ul><li>C linical Validity </li></ul><ul><li>C linical Utility </li></ul><ul><li>E thical, Legal and Social Implications </li></ul>
    49. 49. Quality Oversight <ul><li>FDA </li></ul><ul><ul><li>Test Kits </li></ul></ul><ul><ul><li>Drug Labeling </li></ul></ul><ul><li>EGAPP </li></ul><ul><ul><li>Coordinated, systematic process for evaluating genetic tests </li></ul></ul><ul><ul><li>Recommendation statements </li></ul></ul><ul><ul><li>http://www.egappreviews.org </li></ul></ul><ul><ul><li>Report completed for CYP450-insufficient evidence; more clinical trials needed </li></ul></ul>
    50. 50. Additional Information & Reviews available at www.egappreviews.org
    51. 51. Personal/Professional Perspective <ul><li>SEMINARS IN ONCOLOGY NURSING, 2006, 22(2), 117-125 </li></ul><ul><li>Example </li></ul><ul><ul><li>NHL </li></ul></ul>
    52. 52. Building Blocks <ul><li>Progress </li></ul><ul><li>Healthcare </li></ul><ul><li>Professionals </li></ul><ul><li>Healthcare </li></ul><ul><li>Systems </li></ul><ul><li>Resources </li></ul><ul><li>Public </li></ul><ul><li>You </li></ul>
    53. 53. Thank you <ul><li>jean.jenkins @nih. gov </li></ul><ul><li>301-496-4601 </li></ul>
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