ABSTRACT
The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
Subject(s)
Chromosome Mapping , Human Genome Project , Informed Consent , International Cooperation , Adult , Child , Female , Genetic Variation , Genetics, Population , Humans , Male , ParentsABSTRACT
The difficulties of operationalizing race in research and practice for social, behavioral, and genetic researchers and practitioners are neither new nor related to recent genetic knowledge. For geneticists, the bases for understanding groups are clines, observed traits that gradually change in frequency between geographic regions without distinct identifiable population boundaries and population histories that carry information about the distribution of genetic variants. For psychologists, race may not exist or be a social and cultural construct associated with fluid social inferences. Because definitions of populations and race can be socially and biologically incongruent, the authors suggest that geneticists and social and behavioral scientists and clinicians attend to external validity issues by operationalizing population and racial categories and avoiding race proxies for other biological, social, and cultural constructs in research designs, data analyses, and clinical practice.
