In addition to the resource cores that the CGREAL will host
to support its own work, the Center will also serve as a resource
to the larger community of scientists, families, and communities
participating in genetic research by providing a responsive,
expert consultation service on issues in genetic research ethics.
Over the last thirty years, clinical ethics committees and
institutional review boards have become standard mechanisms
for addressing ethical issues in American hospitals and research
institutions. However, approaching an institutional regulatory
committee for advice about how best to address a particular
issue in the design or conduct of genetic research is an unattractive
prospect for most investigators. These committees are usually
not equipped with precisely the right expertise and they can
be cumbersome to use. The families and communities involved
in genetic research have quite limited access to these institutional
sources of advice in the first place. In addition, it is usually
the institutional committees themselves that identify and raise
new issues, such as the ongoing controversy over asking research
subjects for medical information about family members without
the relatives' prior consent. As a wider sweep of biomedicine
turns to genomic research strategies, good sources of independent,
informal, evidence-based advice will become increasingly important.
To help address this need, the CGREAL will sponsor a rapid
action consultation service, REACT, designed to respond to queries
from researchers, research participant organizations, institutional
review boards, and government programs about ethical issues
in the design and conduct of genetic research. Under the leadership
of Mark Aulisio, a nationally-recognized expert on ethics consultation,
this service will draw from both the CGREL faculty, Resource
Cores, our National Advisory Board, and, if necessary, other
colleagues in the field at large to pull together effective
consultation teams tailored to the needs of the query under
consideration. Working primarily through electronic communications,
these teams will be able to provide responses ranging from simple
regulatory fact-finding to multidisciplinary briefings on policy
options. Dr. Aulisio is particularly well qualified to lead
this group. He has both served on and studied bioethics consultation
teams for a decade. He was the Executive Director of the national
task force on ethics consultation that yielded the 1998 Report
Core Competencies for Health Care Ethics Consultation, and he
currently chairs the national American Society of Bioethics
and Humanities Clinical Ethics Task Force. His recent edited
book,92 represents the state-of-the-art of thinking about the
dynamics and challenges of bioethics consultation. The other
standing members of the REACT service will be Jessica Berg,
JD, head of the CGREAL legal/regulatory core, Sue Lewis, Coordinator
of the CWRU Family Studies Core in the Center for Human Genetics,
Eric Kodish, Chair of the Rainbow Babies and Childrens Hospital
Ethics Committee, Patricia Marshall, and Eric Juengst.
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