Cancer Control Research
5R03CA070599-02
Freedman, Tovia G.
CULTURAL ASPECTS OF PREVENTION TRIALS/GENETIC SCREENING
AbstractDESCRIPTION: (Applicant's Abstract) The primary purpose of the proposed
research project, Cultural Aspects: Prevention Trials/Genetic Screening,
is to generate baseline data regarding women's health beliefs and values
with respect to clinical prevention trials and genetic screening for
breast cancer. The proactive acquisition of these data will lead to
improved, more adaptable psychosocial and policy initiatives and
interventions on behalf of women considered high risk for developing
breast cancer. The generation of this knowledge is critical in light of
the implementation of clinical prevention trials and the identification
of a breast cancer susceptibility gene. Ethical, social and political
concerns are embedded in these areas of medicine and science and need
further exploration so a diverse subpopulation of women can benefit from
these advances. It is important that information and programs offered
to people regarding participation in prevention trials and genetic
screening be comprehensible and accessible. This necessitates the
presentation of information in a context that is culturally meaningful
to specific subpopulations by being responsive to self-identified needs
and values.
The goal of the research project will be accomplished through an
ethnographic inquiry designed to provide in-depth social, psychological
and cultural knowledge regarding the health and illness beliefs and
values of an ethnically, racially and economically diverse population.
The research method includes: semi-structured interviews, focus groups
and observational experiences. Subjects for the study include: healthy
women who are high risk for breast cancer; women with breast cancer and
their female relatives; case and ethics conferences and the Committee
on Human Subjects Review. It is expected that the results of this
project will enhance understanding of cancer intervention strategies -
prevention trials and genetic screening - by reframing knowledge for
access by diverse subpopulations of women who are at risk for developing
breast cancer. The long-term goal of this study is for the research
data to be amenable to the future development of several studies, to be
followed by the initiation of an intervention grant which would test
content, assess various approaches to informed consent procedures, and
eventually lead to a randomized trial.
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