GENETIC RESEARCH AS A TEACHING MODEL

1. GENETIC RESEARCH AS A TEACHING MODEL

2. WHY? • MINORITY STUDENTS REMAIN UNDER-REPRESENTED AMONG BIOMEDICAL SCIENTISTS • MINORITY COMMUNITIES HAVE SPECIAL HEALTH PROBLEMS

3. WHY ARE MINORITY STUDENTS UNDER-REPRESENTED? • OPPORTUNITES? • ROLE-MODELS? • DISCRIMINATION? • LACK OF INTEREST? • INADEQUATE PRIOR EDUCATION? • CULTURAL RELEVANCE?

4. PERCEPTION OF RESEARCH • A “LONER” • BRILLIANT, BUT STUPID • FASCINATED BY THINGS THAT MEAN LITTLE TO MOST PEOPLE • OCCASIONALLY DANGEROUS TO SOCIETY • POCKET PROTECTORS • WHITE, MALE?

5. REALITY OF RESEARCH • RESEARCHERS COME FROM INCREASINGLY DIVERSE BACKGROUNDS • MANY WORK ON ISSUES OF CRITICAL IMPORTANCE TO SOCIETY

6. WHAT IS PROPOSED? • PRE-ECLAMPSIA (PE) IS A SIGNIFICANT PROBLEM IN AMERICAN INDIAN COMMUNITIES • GENETIC CHANGES KNOWN IN NON-INDIAN POPULATIONS THAT AFFECT PE

7. STUDENT RESEARCHERS • 4-5 TURTLE MOUNTAIN COMMUNITY COLLEGE STUDENTS AT A TIME • 10 HOURS PER WEEK • PLAN STUDY • LEARN PRINCIPLES OF ETHICAL RESEARCH • MAINTAIN IRB APPROVAL, COMMUNITY LAISON

8. STUDENT RESEARCHERS • OBTAIN INFORMED CONSENT FROM PARTICIPANTS • COLLECT SAMPLES, ANALYZE DNA • RESEARCH LITERATURE, WRITE PAPER • TEACH OTHER STUDENTS ABOUT THEIR EXPERIENCE

9. PHASES I AND II • RETROSPECTIVE: INVITE 100 WOMEN WITH PE WHO HAVE DELIVERED IN PAST 10 YRS TO PARTICIPATE • INVITE 200 CONTROLS FROM SAME TIME PERIOD • PROSPECTIVE: INVITE ALL WOMEN IN PRENATAL CLINIC • TEST: FACTOR V (LEIDEN)

10. PHASE III SIZE LADDER • OTHER GENETIC CHANGES TESTED ON SAMPLES OBTAINED • COLLECTION OF SAMPLES BY FINGERSTICK, LIKE DIABETIC TESTING M/M +/M +/+

11. BUILDING INFRASTRUCTURE • STAFF: • RESEARCH OPPORTUNITIES • ADDITIONAL TRAINING • STUDENTS: • “HANDS ON” EXPERIENCE • RELEVANT PART TIME WORK • ? ENTHUSIASM FOR SCIENCE • TMMC AND COMMUNITY: • COMMUNITY SERVICE • IRB INFRASTRUCTURE? • LABORATORY EQUIPMENT • ECONOMIC DEVELOPMENT

12. ANNUAL RESEARCH CONFERENCE • PEOPLE INVITED: • CHAIR / COUNCIL • HEALTH BOARDS • PHYSICIANS • TEACHERS • INTERESTED FOLKS • LEARN ABOUT RESEARCH / OPPORTUNITIES • SUGGEST IMPORTANT AREAS FOR HEALTH RESEARCH • HELP DEVELOP COMMUNITY RESEARCH AGENDA

13. 1st ANNUAL RESEARCH CONFERENCE • HELD 4/21-22/05 • Dr. Everett Rhoades, (history of research in Indian Country) • Dr. Bull Bennett, (current state of research in tribal colleges) • Ms. Beverly Pigman-Becenti, (Navajo IRB experience) • Dr. Clifton Poodry, (funding opportunities for research) • Dr. Donald Warne, (research and tribal self-determination)

14. 2nd ANNUAL RESEARCH CONFERENCE • HELD 4/20-21/06 • Dr. Joy Dorscher, (Center of American Indian and Minority Health, Univ of Minn) • Dr. Anselm Davis, (White House Initiative on Tribal Colleges and Universities) • Ms. Irene Linklater, (Association of Manitoba Chiefs) • Dr. David Burgess, (Cell Biology, Boston College) • Dr. David Baines, (Traditional medicine and biomedical research)

15. ANNUAL RESEARCH CONFERENCE • Talking Circles discussions on: • INMED students from Grand Forks led discussion on research from their viewpoint • aspirations and goals for research in this community • Concerns about research harms • Should the tribe establish an IRB? • A brief course in genetics, led by Dr. Linda Burhanstipanov • Translation of research findings into clinical practice

16. STUDENT ACTIVITIES • BI-WEEKLY MEETINGS WITH DR BEST, AND RESEARCH TECHNICIAN • QUARTERLY WORKSHOPS WITH OTHER TRIBAL COLLEGES / IVN • PRESENTATIONS TO HEALTH BOARD AND COMMUNITY LEADERS • 2-3 DAY TRIPS TO “LOCAL” RESEARCH FACILITIES • ATTEND NATIONAL RESEARCH CONFERENCES

17. STUDENT ACTIVITIES • QUARTERLY IVN PRESENTATIONS: • 12/04, 3/05, 6/05, 9/05, 2/06 • Site visit to Cankdeska Cikana, UTTC, Sitting Bull College • Presentations to Community: • Health Board (6/7/05, 2/28/06) • Elders’ meetings • Health Fairs • HCOP students • Crystal students • Radio and newspaper features

18. STUDENT ACTIVITIES • Travel to National Conferences: • AIHEC, Albuquerque, 4/05 • SWARM, Tucson, 4/05 • IHS Research Conf, Seattle, 5/05 • Epidemiology training, Portland, 6/05 • AAIP, Washington, DC, 8/05 • APHA, Philadelphia, PA, 12/05

19. STUDENT ACTIVITIES • Visit Research labs: • Winnipeg, DNA diagnostic labs, 1/05 • UND, Dr. Cindy Anderson, 3/05 • NDSU PCR training, Dr. Sheri Dorsam, 5/05 • MBIRI grantee, Timber Lake, SD, 9/05 • USDA Human Nutrition Lab, Grand Forks, ND, 10/05 • Drs. Beachy, Super and Keller’s labs at Minot State University, 2/10/06

20. PROGRESS TO DATE • Recruited and enrolled: • 61 Cases • 44 Controls • 37 Phase II Cohort participants • Substantial training for SRAs and staff • Good communication and community support • 1st Annual Research Conference held, 4/05 • 2nd Annual Research Conference held, 4/06 • Faculty development workshop conducted, 12/05 • 2nd Faculty development workshop planned, 5/06

21. CHALLENGES • Developing reliable, stable PCR methods for FVL analysis • PCR workshop training at NDSU went well, 5/05 • ? Over confident, allowed students and RT considerable time to troubleshoot • Using FTA cards, difficult to standardize template • Now developing consistent results with MBL, which has a track record with FTA template • FVL protocol beginning to show good amplification, ? incorrect annealing temp

22. CHALLENGES

23. CHALLENGES FVL PROTOCOL

24. PROJECT STAFF • PRINCIPAL INVESTIGATOR • CONSULTANTS • RESEARCH TECHNICIAN (FULL TIME) • ADMINISTRATIVE ASSISTANT (PART TIME) • STUDENT RESEARCH ASSISTANTS (10 HR / WK) • 5 STUDENTS AT A TIME • 9 STUDENTS TOTAL TO DATE

25. FUTURE DIRECTIONS • ADDITIONAL GENETIC ANALYSES ON PRE-ECLAMPSIA COHORT • INCLUSION OF OTHER COMMUNITIES AND COLLEGES • GENETIC EFFECTS OF OFFSPRING ON PRE-ECLAMSIA • GENETIC ANALYSIS OF SAMPLES FROM OTHER AMERICAN INDIAN STUDIES, EG. THE STRONG HEART STUDY • STUDY OF OTHER CONDITIONS