Bridging the Health Genomics Divide

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Bridging the Health Genomics Divide Challenges
and Opportunities

• Karen Hofman, M.D.
• Fogarty International Center
• U.S. National Institutes of Health

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Introduction

• Areas of genomic research relevant to the South
• Global Research Global Relevance
• Genetic Technology Challenges to Equity
• Obstacles to enhancing genetic capacity
• NIH efforts to build capacity

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Areas of genomic research relevant to the South

• Relatively inexpensive diagnostics for which the
  DNA technology has already been developed
• Vaccines and therapeutics for tuberculosis and
  HIV/AIDS
• Vaccines, therapeutics and diagnostics for the
  most neglected diseases, which have no market in
  the developed world
• Therapies for non-communicable diseases such as
  diabetes and cancer
• Pharmacogenomics the examination of the
  implications of genomic variability in individual
  responses to drugs

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Global Research Global Relevance

• As the focus moves from the relatively uncommon
  single gene disorders to understanding common
  diseases in which multiple gene interactions play
  a role, studies will be required in different
  populations worldwide. These will require
• Global research collaborations
• Data sharing
• Pooled analyses

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Genetic technology new challenges to equity

• Process of development of vaccines and
  therapeutics resulting from genomic research
  genomic technologies is generally complex,
  laborious, and expensive
• Primary goal of producing returns to private
  sector investors will likely conflict with the
  goal of health equity
• Global health disparities further widened if
  genomics research focuses on a small but
  lucrative segment of the worlds population
• Few people who have the expertise to perform this
  work in the South and research infrastructure is
  weak

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Enhancing Genetics Research Capacity in the South

• Collaborations between researchers in the North
  and South offer benefits to all parties
• Challenge is to find effective ways of boosting
  expertise in genetic science in the South to
  ensure full partnership, while avoiding the
  pitfalls of brain drain
• Two major obstacles to full participation by the
  South financing and qualified, trained personnel

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Financing Genetics Research

• Technology seldom viewed as a strategic sector by
  government in the South
• Examples of commitments to building capacity
• Brazil
• Mexican Center for Genomic Medicine
• India, Department of Biotechnology
• Germany, Max Planck Institutes
• Argentina, The National University of La Plata

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Manpower Issues

• A cadre of indigenous researchers who understand
  the science, who can negotiate with
  collaborators, and who can analyze the data in
  country is a prerequisite for equitable
  collaboration
• Since population-based research is unlikely to
  have immediate benefit for study participants,
  scientists will also require a clear grasp of the
  ethical dilemmas and potential for exploitation
  that could arise during the conduct of the
  research itself

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NIH Research Capacity Building Efforts

• The Fogarty International Center, in
  collaboration with NIH partner Institutes and
  Centers, has developed a program to address the
  research capacity gap in genetic sciences in the
  South
• Program grew out of consultations with
  researchers and scientists in human genetics from
  the South to explore the potential infrastructure
  needs, the research gaps, the ethical and
  cultural barriers to performing genetics
  research, and the potential risks of doing such
  research
• Goal Program will advance human genetics
  research globally, while enhancing the limited
  but growing capacity in genetic science in the
  South

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ConsultationWhat is needed to establish an
infrastructure to support genetic research

• Training in molecular biology and molecular
  epidemiology
• Public education
• Policies and guidelines to ensure quality control
  of laboratory services
• Promote dialogue on transport of tissues, cells
  and DNA

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Consultation (Contd)Focus research on

• Rapid, low cost diagnostics
• Resistance and susceptibility to infectious
  diseases, production of vaccines
• Understanding mechanisms of diseases that are
  significant locally including cardiovascular
  disease, diabetes, and cancer
• Epidemiological analysis on the association
  between genetic variation and disease
• Genetic research in the context of
  environmentally based risk factors nutrition
  and workplace exposures
• Genetic services delivery for individuals and
  families with single gene disorders

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Consultation (Contd)

• Major barriers to doing genetic research
• Potential risks in terms of performing genetic
  research
• Address cultural concerns about obtaining access
  to individuals, families, cohorts, and
  communities
• Monitor and evaluate the population impact of
  genetic tests and services

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WHO Report Genomics and World Health

• Challenges of harnessing new genomic knowledge to
  improve global health
• Research funding agencies in North and South
  should promote capacity building

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Summary

• 1. Genomic research is relevant
• 2. Challenges to equity posed by genetic
  technology
• 3. Examples of how obstacles to funding and
  manpower issues in developing genetic research
  capacity can be addressed

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The Fogarty Mission

• To promote and support scientific research and
  training internationally to reduce disparities in
  global health
• hofmank_at_mail.nih.gov
• www.nih.gov/fic