GENETIC RESEARCH AS A TEACHING MODEL

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GENETIC RESEARCH AS A TEACHING MODEL
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WHY?

• MINORITY STUDENTS REMAIN UNDER-REPRESENTED AMONG
  BIOMEDICAL SCIENTISTS
• MINORITY COMMUNITIES HAVE SPECIAL HEALTH PROBLEMS

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WHY ARE MINORITY STUDENTS UNDER-REPRESENTED?

• OPPORTUNITES?
• ROLE-MODELS?
• DISCRIMINATION?
• LACK OF INTEREST?
• INADEQUATE PRIOR EDUCATION?
• CULTURAL RELEVANCE?

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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?

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REALITY OF RESEARCH

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

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WHAT IS PROPOSED?

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

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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

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STUDENT RESEARCHERS

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

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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)

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PHASE III
SIZE LADDER

• OTHER GENETIC CHANGES TESTED ON SAMPLES OBTAINED
• COLLECTION OF SAMPLES BY FINGERSTICK, LIKE
  DIABETIC TESTING

M/M
/M
/
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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

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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

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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)

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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)

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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

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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

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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

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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

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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 Kellers labs at Minot
  State University, 2/10/06

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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

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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

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CHALLENGES
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CHALLENGES
FVL PROTOCOL
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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

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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