INFORMED CONSENT & CONCEPTS OF RACE IN GENETIC RESEARCH
Project Number7R01HG002207-02
Contact PI/Project LeaderMARSHALL, PATRICIA A.
Awardee OrganizationCASE WESTERN RESERVE UNIVERSITY
Description
Abstract Text
DESCRIPTION: (Applicant's abstract) Knowledge of the genetic code and the
capacity for large-scale genotyping has fundamentally altered the character of
biomedical research. To advance our understanding of the ethical dimensions of
genetic research for diverse populations we will address questions that take
into account concerns of the individual, scientific institutions, and the
broader community. Informed consent provides the focus of the ethical exchange
between investigators and study participants. We will use this social
interaction as the context for exploring ethical issues associated with the
implementation of collaborative international genetic research. Broader
concerns of society will be addressed by examining how genetic identity and
race are conceptualized in both the lay and professional communities.
The proposed research builds on an extensive infrastructure of genetic
epidemiological field studies being carried out in metropolitan Chicago and
Nigeria. These studies are part of the NIH-funded Chronic Disease Network (CDN)
and include investigations of the genetic and epidemiological determinants of
hypertension and breast cancer. Currently, the process of informed consent to
participate in international genetics research is not adequately understood.
Simply transferring standard methods of obtaining consent from industrialized
societies to developing countries is wholly inadequate, but no reasonable
alternatives have yet been developed. In addition, the manner in which findings
are used, and the representation of communities that are being studied to
scientific and lay audiences has received very little attention in biomedical
research. A reformulation of the concept of race to accommodate information on
sequence variation is urgently needed.
The goals of this project are to: 1) define existing processes for obtaining
informed consent in genetic research on hypertension and breast cancer
currently being conducted in metropolitan Chicago and Nigeria; 2) identify
mechanisms to ensure culturally appropriate informed consent that are maximally
informative and protective for all research participants; 3) examine the ways
in which the cataloguing of new DNA polymorphisms interact with and perpetuate
current concepts of race, ethnicity and culture; and 4) identify mechanisms for
appropriate use of the concepts of race, ethnicity and culture in genetic
epidemiological research in order to foster the development of effective
clinical intervention and access to health care for all ethnic populations.
No Sub Projects information available for 7R01HG002207-02
Publications
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Outcomes
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