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Our society currently faces many complex and perplexing issues related to biotechnology, including the need to define the outer boundaries of genetic research on human beings and the need to protect individual and group rights to human tissue and the knowledge gained from the study of that tissue. Scientists have increasingly become interested in studying so-called “population isolates” to discover the nature and location of genes that are unique to particular groups. Indigenous peoples are often targeted by scientists because “the (...) |
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In this paper, the author questions whether the research ethics guidelines and procedures are robust enough to protect groups when conducting genetics research with socially identifiable populations, particularly with Native American groups. The author argues for a change in the federal guidelines in substance and procedures of conducting genetic research with socially identifiable groups. |
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The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples (...) |
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ABSTRACT Genetics research, like research in sociology and anthropology, creates risks for groups from which research subjects are drawn. This paper considers what sort of protection for groups from the risks of genetics research should be provided and by whom. The paper categorizes harms by distinguishing process‐related from outcome‐related harms and by distinguishing two kinds of group harms. It argues that calls for community engagement are justified with respect to some kinds of harms, but not with respect to others; and (...) |
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