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NIH May 1, 1997 | R01
Mapping Genetic Knowledge: An Anthropological Study
Institution: Lewis and Clark College
FOA Number: N/A
Abstract
This is a comparative anthropological analysis of the social networks associated with three groups of heritable connective tissue disorders: 1) Marfan syndrome, epidermolysis bullosa and chondrodysplasias. Using participant observation and interviews, the study will investigate the production and circulation of genetic knowledge among three interrelated constituencies: 1) laboratory researchers; 2) clinicians; and 3) lay support groups. The project aims to identify and describe institutions, events, and practices that facilitate or impede knowledge transfer among members of these groups. The project will also examine contrasts in 1) phenotypes and phenotypic variability; 2) pathogenesis; and 3) emerging approaches to diagnosis and therapy for each of these disease groups, first, as they are clinically and scientifically defined, and then, as they influence the social experiences and identity formation of affected individuals. This study will encourage and facilitate public education through documenting achievements in, and illustrating barriers to, the effective dissemination of new genetic knowledge. Finally, the project will train a new group of anthropologists to conduct future multi-site fieldwork on genetics and its social contexts.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG001582Start Date:
May 1, 1997End Date:
Apr 30, 2000PROJECT TERMS:
behavioral /social science research tag, bone development disorder, Clinical Research, epidermolysis bullosa, Ethics, Genetic Counseling, genetic disorder diagnosis, health care professional practice, Health education, health related legal, human population genetics, human subject, Information Dissemination, Interview, Marfan syndrome, Medical Education, osteogenesis imperfecta, pathologic process, Phenotype, Quality of life, skeletal disorder chemotherapy, social support network, sociology /anthropology, workshop