Learning Objectives. Introduction
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1 Tools for Teaching Genetics in Primary Care Charles J. Macri, MD Leon Moore, Ph.D. NEGEA Baltimore, Maryland 3 March 2001 Learning Objectives Why is genetics an important topic for discussion now? Identify several reasons to teach Genetics in a systematic manner Demonstrate the USU Telegentics website How do we use this site to provide information for students and primary care providers Identify other Web based resources in Medical Genetics Introduction Genetics is the study of biologic variation Medical genetics is the application of this study of biologic variability to human health and disease 1
2 Methods of Instruction Problem-based education Case discussion Self-Instruction using widely available resources web-based NIH/NCI Standard practice guidelines ACOG ACMG USU Telegenetics Website - Introduction Why When? Where? For Whom? What? How? Why? Human Genome Project Mapping complete Disease gene ID Complex diseases Use of sequence info Protein structure Drug development Prevention 2
3 Implications of the Human Genome Project for Medical Science New diagnostic Tools Prevention strategies Treatment In-utero correction Somatic therapies Pharmacogenomics Why Is Teaching Genetics Important? Institute of medicine report about the future of medicine Assessing genetics risk Teaching genetics in Medical school NCHPEG Core Competencies in Genetics for all Health Professionals Because of Human Genome completion New paradigm in Medicine Diagnostic Therapeutics Prevention 3
4 Why? - Genes and Heart Disease Genetics of complex Diseases are being Identified Patients and families Will seek information Order the best test Save money WHY Teach Genetics? Importance in medicine Future therapies Diagnostics Risk assessment Scientific literature Cancer Genetics and Society Ethical issues in cancer Genetics Whom do we test? When to test? What tests are useful? Can we use this information To improve our health? 4
5 Human Genome Project and OBGYN ACOG meeting in May 2001 Francis Collins to speak: Cystic fibrosis Other genetic info How Do We Apply Genetics to Future Generations? Somatic manipulation? Gamete enhancement? Embryo selection? Sex selection Other factors? Height? IQ? Genetics and Information Technology Vast amount of info High speed computers Gene structure Protein structure Interactions Drug development 5
6 Legal Concerns A force for change? Will malpractice risk foster change? Refer any questions? To whom? At what point in care? At what cost? USU Telegenetics Website - When? Navy established tele-radiology, tele-dermatology and tele-genetics Ships digital radiography Distance interpretation Overseas bases isolated with limited specialty consultation available USU Telegenetics Website - Where? Applied Physics Laboratory at JHU Contract with navy telemedicine office Genetics information to deployed healthcare providers Identification of laboratory services in remote locations Ask a Geneticist Now hosted by the Uniformed Services University s Department of Biomedical Informatics 6
7 USU Telegenetics What? Pilot project as part of navy telemedicine Educational information Case studies for medical students Ethical, legal and social issues including ethics course from USU Lecture presentations USU Telegenetics What? Distance learning lectures Standardized bibliography of genetics references Web- based resources OMIM Medline Databases ELSI Support groups Support Groups for Patients With Genetic Conditions Alliance of support Groups Patient driven requests For information Physician requests for Genetic information 7
8 Information About Genetic Tests Clinical information Referral lab services Follow-up recommendations Counseling issues Genetics and Primary Care? What is the value? What about cost? Who will pay for this? How much time? Privacy? Discrimination? Informed consent? USU Telegenetics - Why? Limited number of geneticists and genetic counselors available Many primary care health providers - trained before genetics information and genomics was so pervasive General medical officers Family physicians, internists, pediatricians, OBGYN 8
9 USU Telegenetics - Why? World-wide deployed forces and their families Time-differences make real-time consultations more challenging 18 hour time difference with Japan 6-8 hour time difference with Europe Universal access to www at DoD facilities USU Telegenetics - Why? Information about genetics changes with new developments On-line information can be updated more easily than books Move information rather than patients Less expensive Less time lost from work Reassurance through information Risks of Genetic Testing Informed consent Knowledge of patient Who controls my DNA? Life insurance company? HMO? Research lab? 9
10 How Shall We Teach Genetics? To whom? Primary care Providers? Medical students? Nurses? Patients/clients? Lawyers? How do differences affect disease? Polymorphisms Gene-environment interactions Prevention Therapeutics HOW Can We Teach Genetics? Problem-based Curriculum Use cases to guide Learning Web-based info Support groups Databases 10
11 USU Telegenetics on-line resource 11
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