Community Studies Issues
Convener: Patricia Marshall
Collaborators: Cynthia Beall, Jessica Berg, Dena Davis, Aaron
Goldenberg, Eric Juengst, James Kazura, Stephen Post, Mary Quinn-Griffin,
Lee Thompson, Christopher Whalen, Peter Whitehouse, Georgia
Wiesner, Chris Winkelman, Peter Zimmerman.
Under the leadership of Patricia Marshall, the CSI research
group conducts comparative empirical studies and ethical
analyses of the design and conduct of population, disease group,
and community-based genetic research. The goal is to study
issues of group identification and recruitment, stigmatization
risks, education, voluntariness, and benefit-sharing.
As an initial pilot project, this group focused on a comparative
study of community engagement practices. The overall goal of
this project was to evaluate proposed models of community consultation,
and the ethical challenges surrounding the application of these
models for genetic research with geographically, politically,
and ethnically diverse communities. An important outcome of
this project will be the development of a framework for community
consultation in genetic research that can be employed by investigators
nationally and internationally. This project will result in
the preparation of a grant proposal to evaluate the application
of the framework for community consultation in genetic research.
Aims:
1. Description of current models for community consultation
for scientific research, with particular attention to proposed
models of community engagement for genetic research.
2. Evaluation of current models for community consultation
against ethical criteria outlined in national and international
guidelines and regulations governing research with human subjects.
3. Case studies of community consultation in on-going genetic
research being conducted by CWRU investigators in the School
of Medicine and the College of Arts and Sciences.
4. The design and implementation of in-depth interviews with
scholars and investigators who have developed, critiqued, or
employed strategies of community consultation for genetic research.
5. The development of a Framework for Community Consultation
for Genetic Research that considers regulatory guidelines, types
of genetic research, and factors relevant to diverse geopolitical
communities, ethnic groups, and disease categories.
Rationale:
Investigators working on population-based genetic studies confront
unique ethical challenges because of the community context of
their research, their methods of inquiry, and the implications
of their findings for social groups.58 Issues surrounding requirements
for informed consent, the protection of privacy and confidentiality,
and relationships between investigators and participants take
on greater complexity and have significance beyond the individual
research subject.59 The potential exists for research results
to be misapplied in the development of health policy or misinterpreted
by the public media and result in the promotion of racist or
discriminatory practices.60 Population-based studies may report
findings that characterize risks or behaviors of sub-groups
that are identifiable because of their ethnic or cultural background,
religious beliefs, or involvement in particular social activities.61
Community consultation is often promoted as a method for preventing
these problems and providing communities with increased control
over their research participation.
Although strategies for community consultation have been proposed,
questions remain concerning their usefulness and applicability.62
What are the circumstances that require community consultation
in genetic research?63 What models work best in specific contexts?
Does community engagement actually achieve its goals for genetic
research? This project seeks to address these questions across
a spectrum of different forms of community engagement.
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