Genetic/Genomic Competencies for Public Health Stephen Margolis, PhD;

Genetic/Genomic Competencies for Public Health Stephen Margolis, PhD; Kristine M. Gebbie, DrPH, RN; Andrew Faucett, MS, CGC; Genetics Competencies for Public Health Workforce Team Columbia University School of Nursing American Public Health Association October 24, 2001

Why GENOMICS not Genetics Genomics is a new evolving term Workgroup chose to encourage “thinking outside the box”

Genetics is currently thought of in relation to conditions: That most people working in public health are rarely involved with Learning genetics had limited value for a public health career Examples include chromosome abnormalities such as Down syndrome and single gene mutations such as Cystic Fibrosis or PKU

GENOMICS refers to those conditions plus . Discoveries from the Human Genome Project (HGP) which show that most adult onset and chronic diseases can be partially caused or prevented by genetic factors Environmental factors also play a significant role Nature and Nurture, not versus

Two Categories Rare gene / High risk Gene frequency usually less than 10% but risk for disease can be greater than 50% HNPCC Colon Cancer BRCA 1 and 2 Breast Cancer MODY 1,2,3 Diabetes Alpha-synuclein Parkinson Disease

Two Categories Common gene / Moderate risk Genes that are very common in the general population (30-50%) but only increase the risk moderately and almost always require environmental factors and other genes ApoE Alzheimer Factor V Leiden Stroke / Clotting CCR5 HIV/AIDS resistance

Genomics and Public Health Human diseases result from gene-environment interaction Public health leadership needed to translate gene discoveries Genetics affects all public health functions: assessment, policy development and assurance Public health must plan to train the workforce in order to build genetics capacity across programs

Human Genome Project future impact Understand biological basis of diseases Predict disease susceptibility before symptoms Interventions targeted to disease biology Pharmacotheraphy Individualized prevention – “Individually Sized”

Genetics Plays a Role in Most DiseaseWHO CDC Heart Disease Cancer Stroke COPD Injury Pneumonia / Influenza Diabetes Suicide Kidney Disease Chronic Liver Disease Heart Disease Stroke Pneumonia HIV / AIDS COPD Diarrhea Perinatal Tuberculosis Trachea/bronchus/lung cancer Traffic Accidents

Why Now ? Technology will produce inexpensive and efficacious genomic risk tests We will have to evaluate relative risk to the community We will have to develop focused messages to those at high risk Consistent with overall public health workforce initative

Team Leaders Lou Turner Deborah Klein-Walker Kristine Gebbie / Mary Ellen Mortensen Health EducatorsKaren Greendale Environmentalist Robert Marino Epidemiologist Laboratory Administration Clinicians Peter D. Rumm

Team Members Administration Clinician Health Laboratory Educator Environmental Epidemiology Robert Jones Elizabeth Tilson Karina Boehm Eric Blank Susan Metcalf Robert Teclaw Kathy Peppe Alan Gutmacher Kathleen Minor Frances Downes Luann White Jennifer Woodward Jean Chabut Theresa Long Kathy Vincent Katherine Kelly Elaine Krueger Robert Rolfs Andy Faucett Scott Zimmerman Harold Bengsch Richard Hopkins Vaughn Upshaw Steve Hinricks Luanne Williams Tal Holmes Michele Puryear Jan Friedman Bob Fineman Joe Kimbrell Jesse Huang

CDC Support Center for Environmental Health Office of Genetics Public Health Practice Program Office

The Process Consistent with other competency definition projects in emerging area of practice A combination of expert opinion and consultation with practice field Key dates March 2000 – Team Leaders Meet August 2000 – Teams Meet and Draft 6 Sets Drafts Revised & Combined – Email & Conference Call March 2001 – Team Leaders Meet – Edit & Cut – Format April 2001 – Outside Review by 60 Associates of Team Members May 2001 – Comments Combined – Team Leaders Review by Email June 2001 – Document Released on OGDP Web Site

Individual competencies Complex combination of knowledge, skills and abilities demonstrated by organization members that are critical to the effective and efficient function of the organization (Center for Public Health Practice, Emory University).

Competency categories All Public Health Workers All Professional Workers Specialty/Concentration-Specific Leaders/administrators Clinicians Epidemiologists Health educators Laboratorians Environmental health workers

Competency statements have many uses Updating/revising job descriptions Do appropriate job descriptions include reference to genomics Employee orientation and training As appropriate to program or profession Self-assessment by workers Am I able to

All Public Health workers should Demonstrate basic knowledge of the role that genomics has in the development of disease Identify the limits of his/her genomic expertise Make appropriate referrals to those with more genomic expertise

All Public Health professionals should Apply the basic public health sciences utilizing the genomic vocabulary Identify ethical and medical limitations Maintain knowledge on the development of genetic advances Identify the role of cultural, social, behavioral, environmental and genetic factors in disease

and should Participate in strategic policy planning Collaborate to solve genomic related problems Participate in the evaluation of genomic services in public health Develop protocols to insure informed consent and . protection

Additionally, as appropriate to discipline, agency or program Leaders / Administrators – 9 more e.g., communicate to policy makers Clinicians – 5 more e.g., apply genomic concepts to clinical services Epidemiology / Data Management – 9 e.g., accurately describe sensitivity/specificity of genetics tests

Health Educators – 7 more e.g. differentiate between genomic education and genetic counselling Laboratory – 7 more e.g., perform genetic assays with appropriate validation studies Environmental health workers- 6 more apply risk communication principles and genomic knowledge accurately

Genomic Competencies www.cdc.gov/genetics/ Questions / Comments Andy Faucett [email protected] Columbia University School of Nursing