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Ethical,
Legal, and Social Issues Core
Kelly Fryer-Edwards, PhD, Director
Wylie Burke, MD, PhD, Co-Director
(profile
of Burke's research in University Week)
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Introduction
Case Studies
Faculty Directory
2003
progress report
(link to NIEHS site)
Introduction
A
working definition of public health genetics is "integrating advances
in human genetics and molecular technology into effective and
ethical public health action to promote health and prevent disease
and disability." This definition implies that many diseases have
both genetic and environmental origins, and that appropriate public
health action must acknowledge the profound ethical, legal and
social issues involved. The Ethical, Legal, and Social Issues
(ELSI) Core focuses on these issues by providing an infrastructure
for research, education, and service.
The Ethical, Legal and Social Issues (ELSI) Core also works closely
with the U.W. program for "Public
Health Genetics in the Context of Law, Ethics and Policy"
(PHG), which provides academic training in ELSI issues and fosters
multi-disciplinary research related to public health genetics.
The
importance of gene-environment interactions in understanding and
preventing disease is indisputable. Much attention has focused
on relatively rare genetic mutations with high penetrance, such
as those in the BRCA1 and BRCA2 genes, which cause inherited predisposition
to breast and ovarian cancer. However, common polymorphisms with
relatively low penetrance are likely to account for a high proportion
of the burden of disease in populations, even if these mutations
cause only modest increases in risk.
Many
polymorphisms influence risk by increasing sensitivity to environmental
exposures. Interventions that reduce the relevant environmental
exposures may provide significant health benefits to genetically
susceptible individuals who carry such mutations. Thus, the practical
applications of ecogenetic research to public health are considerable.
However, as the research moves out of the laboratory and into
the public health realm, such translational research must consider
the ethical, legal, social and policy implications of ecogenetic
information.
Goals
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Facilitate the development of research projects to identify
and study the ethical, legal, social and policy implications
of scientific advances in ecogenetics and environmental genomics,
especially in relation to high frequency, low penetrance genetic
polymorphisms;
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Develop and implement education strategies and materials that
address the ethical, legal, social and policy implications of
ecogenetic research for several target audiences, including
graduate students, CEEH Investigators and trainees, health professionals
and community groups.
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Provide a service to other Center Investigators by maintaining
the existing CEEH "Registry for the Study of Genetic and Environmental
Risk Factors" and by providing consultation to Center Investigators
on ethical, legal and policy issues, including informed consent,
for genetic studies involving human subjects.
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Case
Studies
As part of its research, members of the ELSI are
developing a series of case studies investigating ethical, legal,
and social issues in the use of genetic information.
Case
Study 1
Genetic Variation in PON1 and Pesticide Sensitivity: Implications
for Workplace Screening
Abstract
Full
study (PDF)
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