The NHGRI Action Plan for Training of Underrepresented

  • Slides: 30
Download presentation
The NHGRI Action Plan for Training of Underrepresented Minority Groups in Genomics Dialogue with

The NHGRI Action Plan for Training of Underrepresented Minority Groups in Genomics Dialogue with Professional Societies Francis S. Collins, M. D. , Ph. D. National Human Genome Research Institute April 15, 2002

Two universal principles of human genetics • Virtually all diseases (except some cases of

Two universal principles of human genetics • Virtually all diseases (except some cases of trauma) have a genetic component • There are no perfect human specimens – all of us carry a significant number of DNA glitches

Sickle cell anemia Adult onset diabetes AIDS

Sickle cell anemia Adult onset diabetes AIDS

A typical page of the human instruction book ATGCCGATCGTACGACACATATCGTCATCGTACTGTCTAGTCTAAACACATCGTACTGCATCGATCCATTTTA TACTGCATCGTACTGCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTTTACCCCATG CATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCAGCATC CATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGG ACTGTCTAAACACATCGTACTGACTGCATCGTACTGCACATATCGTCATAGACT TCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATG

A typical page of the human instruction book ATGCCGATCGTACGACACATATCGTCATCGTACTGTCTAGTCTAAACACATCGTACTGCATCGATCCATTTTA TACTGCATCGTACTGCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTTTACCCCATG CATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCAGCATC CATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGG ACTGTCTAAACACATCGTACTGACTGCATCGTACTGCACATATCGTCATAGACT TCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATG ATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATA GCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGACTGTCTAAACACATCGTACTGCATCGTAC TGACTGCATCGTACTGCACATATCGTCATAGACTTCGTACTGTCTAGTCTAAACACATCCCACATATCGTCAT CGTACTGTCTAGTCTAAACACATCCCACTTTACCCATGCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTC ATCGTACTGTCTAGTCTAAACACATCCCAGCATCCATATCGTCATCGTACTGACTGTCTAGTCTAAACACATCCTAT GCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGACTGTCTAGTCTAAACACATCCATCGTACTGACTGCATCGTACTGACTGCACATATCGTCATACATAGACTTCGTACTGACTGTCTAGTCTAAACACATCCCACATATCGTCAT CGTACTGACTGTCTAGTCTAAACACATCCCACTTTACCCATGATATCGTCATCGTACTGACTGTCTAGTCTAAACACATCCCACA TATCGTCATCGTACTGACTGTCTAGTCTAAACACATCCTATAGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGA CTGTCTAGTCTAAACACATCCATCGTACTGACTGCATCGTACTGACTGCATCGTACTGCACATATCGTCATAGACTT CGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATGC ATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCAGCATCC ATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGA CTGTCTAAACACATCGTACTGCATCGTACGACTGCATCGTACTGCACATATCGTCATAGACTTC GTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATGAT ATCGTCATCGTACTGTCTAGTCTAAACACATCCCACACTGTCTAAACACATCGTACTGCATCGTACGC CGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGACTGTCTAAACACATCGTACTGCATCGTACTG

Our instruction books are not quite the same ATGCCGATCGTACGACACATATCGTCATCGTACTGTCTAGTCTAAACACATCGTACTGCATCGATCCATTTTA TACTGCATCGTACTGCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTTTACCCCATG CATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCAGCATC CATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGG ACTGTCTAAACACATCGTACTGACTGCATCGTACTGCACATATCGTCATAGACT TCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATG

Our instruction books are not quite the same ATGCCGATCGTACGACACATATCGTCATCGTACTGTCTAGTCTAAACACATCGTACTGCATCGATCCATTTTA TACTGCATCGTACTGCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTTTACCCCATG CATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCAGCATC CATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGG ACTGTCTAAACACATCGTACTGACTGCATCGTACTGCACATATCGTCATAGACT TCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATG ATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATA GCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGACTGTCTAAACACATCGTACTGCATCGTAC TGACTGCATCGTACTGCACATATCGTCATAGACTTCGTACTGTCTAGTCTAAACACATCCCACATATCGTCAT CGTACTGTCTAGCCTAAACACATCCCACTTTACCCATGCATCGTACTGTCTAGTCTAAACACATCCCACATATCGTC ATCGTACTGTCTAGTCTAAACACATCCCAGCATCCATATCGTCATCGTACTGACTGTCTAGTCTAAACACATCCTAT GCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGACTGTCTAGTCTAAACACATCCATCGTACTGACTGCATCGTACTGACTGCACATATCGTCATACATAGACTTCGTACTGACTGTCTAGTCTAAACACATCCCACATATCGTCAT CGTACTGACTGTCTAGTCTAAACACATCCCACTTTACCCATGATATCGTCATCGTACTGACTGTCTAGTCTAAACACATCCCACA TATCGTCATCGTACTGACTGTCTAGTCTAAACACATCCTATAGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGA CTGTCTAGTCTAAACACATCCATCGTACTGACTGCATCGTACTGACTGCATCGTACTGCACATATCGTCATAGACTT CGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATGC ATCGTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTA TTCTAAACACATCCCAGCATCC ATATCGTCATCGTACTGTCTAGTCTAAACACATCCTATGCCGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGA CTGTCTAAACACATCGTACTGCATCGTACGACTGCATCGTACTGCACATATCGTCATAGACTTC GTACTGTCTAGTCTAAACACATCCCACATATCGTCATCGTACTGTCTAGTCTAAACACATCCCACTTTACCCATGAT ATCGTCATCGTACTGTCTAGTCTAAACACATCCCACACTGTCTAAACACATCGTACTGCATCGTACGC CGATCGTACGACACATATCGTCATCGTACTGCCCTACGGGACTGTCTAAACACATCGTACTGCATCGTACTG

How do health disparities arise? • Most genetic variation is shared amongst all groups,

How do health disparities arise? • Most genetic variation is shared amongst all groups, though frequencies of disease-associated variants may vary. • Differences in disease incidence between populations may also be due to diet, lifestyle, or other environmental factors. • Sorting this out requires research on large numbers of individuals where both environment and heredity are carefully investigated.

In order for all populations to benefit fully from genomic medicine, all populations need

In order for all populations to benefit fully from genomic medicine, all populations need to be part of genomic research

The major contributing genes for diabetes, heart disease, cancer, mental illness, Alzheimer’s and Parkinson’s

The major contributing genes for diabetes, heart disease, cancer, mental illness, Alzheimer’s and Parkinson’s disease, asthma, etc. will be identified within the next 5 – 7 years.

Ethical, Legal, and Social Implications An integral component of the Human Genome Project

Ethical, Legal, and Social Implications An integral component of the Human Genome Project

2010 Mainstreaming of individualized preventive medicine -- Predictive genetic tests available for a dozen

2010 Mainstreaming of individualized preventive medicine -- Predictive genetic tests available for a dozen conditions -- Interventions to reduce risk available for several of these -- Pharmacogenomics is standard of care for several drugs BUT…. -- Will access be inequitable? Will health disparities persist? -- Will reasonably effective legislative solutions to genetic discrimination be in place?

2020 Genomic therapeutic revolution in full swing -- Gene-based designer drugs available for diabetes,

2020 Genomic therapeutic revolution in full swing -- Gene-based designer drugs available for diabetes, Alzheimer’s… -- Gene therapy standard of care for several conditions BUT…. -- Intense debate underway on non-medical uses of genetics

None of this can happen without the best and brightest minds of the current

None of this can happen without the best and brightest minds of the current scientific generation

National Human Genome Research Institute National Institutes of Health http: //www. nhgri. nih. gov/Policy_and_public_affairs/

National Human Genome Research Institute National Institutes of Health http: //www. nhgri. nih. gov/Policy_and_public_affairs/ Minority_Activities/index. htm

GOAL To increase the number of underrepresented 1 minorities trained in genomics and ELSI

GOAL To increase the number of underrepresented 1 minorities trained in genomics and ELSI 2 research 1/ African American, Alaskan Natives, Hispanic American, Native Americans, and Pacific Islanders. 2/ Ethical, legal and social implications of genetics and genomics research.

PRINCIPLES Underrepresented communities must be involved. Opportunities must be available at all career levels.

PRINCIPLES Underrepresented communities must be involved. Opportunities must be available at all career levels. Programs must be anchored in institutions involved in genome and ELSI research. All NHGRI programs must be responsive to the Plan must have achievable goals, measurable outcomes, appropriate reviews, and undergo evaluation.

COMPONENTS 1. 2. 3. 4. 5. Research Training Research Collaborations Education Outreach/Communications Partnerships

COMPONENTS 1. 2. 3. 4. 5. Research Training Research Collaborations Education Outreach/Communications Partnerships

Research Training Opportunities in Genomics U. S. Universities and Research Institutions Fellowships in Genomic

Research Training Opportunities in Genomics U. S. Universities and Research Institutions Fellowships in Genomic and ELSI Research Career Development Awards Support for Research Experiences Travel Awards for Courses and Scientific Meetings Dissertation Awards for Research in ELSI Topics

Research Training Opportunities in Genomics NHGRI’s Bethesda Campus Fellowships Visiting Investigators’ Program for Faculty

Research Training Opportunities in Genomics NHGRI’s Bethesda Campus Fellowships Visiting Investigators’ Program for Faculty Summer Research Internships Summer Short Course in Genomics for Faculty

COMPONENTS 1. 2. 3. 4. 5. Research Training Research Collaborations Education Outreach/Communications Partnerships

COMPONENTS 1. 2. 3. 4. 5. Research Training Research Collaborations Education Outreach/Communications Partnerships

Partnerships National Institute of General Medical Sciences • Undergraduate/ graduate traineeships and travel awards

Partnerships National Institute of General Medical Sciences • Undergraduate/ graduate traineeships and travel awards in genomics and ELSI • Postdoctoral fellowships in research and teaching • Institutional training grant to the Meharry/ Vanderbilt Consortium • Expansion of the ‘Minority Access to Research Careers’ program into genomics

Partnerships Professional and Scientific Societies Goal: Pursue innovative approaches to increase the number of

Partnerships Professional and Scientific Societies Goal: Pursue innovative approaches to increase the number of underrepresented minorities that are pursuing doctoral studies in genomics, including ELSI research

Definitions So whats an underrepresented group Underrepresented inDefinitions So whats an underrepresented group Underrepresented in
Wrapup NHGRI strategic plan What does the NIHWrapup NHGRI strategic plan What does the NIH
WORKSHOP SUMMARY NHGRI Training and Career Development ProgramsWORKSHOP SUMMARY NHGRI Training and Career Development Programs
BF 528 Introduction to Genetics and Genomics NHGRIBF 528 Introduction to Genetics and Genomics NHGRI
Training Future Scientists Factors Predicting Underrepresented Minority StudentTraining Future Scientists Factors Predicting Underrepresented Minority Student
Training Future Scientists Factors Predicting Underrepresented Minority StudentTraining Future Scientists Factors Predicting Underrepresented Minority Student
RBWM SEND ACTION PLAN RBWM SEND ACTION PLANRBWM SEND ACTION PLAN RBWM SEND ACTION PLAN
Action Plan Development Action plan for PSFH improvementAction Plan Development Action plan for PSFH improvement
ACTION PLAN CECILIA GUAMBA C ACTION PLAN 1ACTION PLAN CECILIA GUAMBA C ACTION PLAN 1
HNC GRADED UNIT 1 ACTION PLAN Action planHNC GRADED UNIT 1 ACTION PLAN Action plan
Petticoat Creek Watershed Action Plan Proposed Action PlanPetticoat Creek Watershed Action Plan Proposed Action Plan
Action Plan Action Plan The 4 Ps PositioningAction Plan Action Plan The 4 Ps Positioning
Trust Financial Action Plan January 2020 Action PlanTrust Financial Action Plan January 2020 Action Plan
2010 2015 Strategic Plan Unit Action Plan Training2010 2015 Strategic Plan Unit Action Plan Training
Targeting students from underrepresented ethnic backgrounds challenges toTargeting students from underrepresented ethnic backgrounds challenges to
Broadening the Participation of Underrepresented Groups in ScienceBroadening the Participation of Underrepresented Groups in Science
Gifted Students With Learning Disabilities TwiceExceptional Students UnderrepresentedGifted Students With Learning Disabilities TwiceExceptional Students Underrepresented
Career and College Planning for Underrepresented Populations AboutCareer and College Planning for Underrepresented Populations About
UNDERREPRESENTED OPPORTUNITY ISAMAR SOLA PROBLEM To be successfulUNDERREPRESENTED OPPORTUNITY ISAMAR SOLA PROBLEM To be successful
Increasing Underrepresented Minority Students at Stevens Marybeth MurphyIncreasing Underrepresented Minority Students at Stevens Marybeth Murphy
Improving Access to Rehabilitation for underrepresented groups inImproving Access to Rehabilitation for underrepresented groups in
RETAINING AND ADVANCING UNDERREPRESENTED WOMEN IN TECHNOLOGY INSIGHTSRETAINING AND ADVANCING UNDERREPRESENTED WOMEN IN TECHNOLOGY INSIGHTS
Communicating Their Stories Strategies to Help Underrepresented StudentsCommunicating Their Stories Strategies to Help Underrepresented Students
The Archival Science Profession and the Underrepresented EnslavedThe Archival Science Profession and the Underrepresented Enslaved