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Whose genes are they? The Human Genome Diversity Project.

The Human Genome Diversity Project (HGDP) has targeted several hundred indigenous peoples worldwide as their source of genetic material. Proponents for this project claim that information derived by analyzing these materials may be used for a variety of purposes ranging from finding a cure for diabetes to resolving debates about human origins. However, the HGDP plan raises many issues for indigenous people. This paper describes the project as well as the possible ethical and policy implications for Native communities.

Cell Line↗

Indigenous peoples and the morality of the Human Genome Diversity Project.

In addition to the aim of mapping and sequencing one human's genome, the Human Genome Project also intends to characterise the genetic diversity of the world's peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part.

Australia↗

Genetic services in the new era: Native American perspectives.

American Indians have arrived at a critical point in their more than 500-year history with the United States Government. With the advent of the new bio-revolution, a number of tribes have voiced vehement opposition to genetic patenting, creation of cell lines, transgenic experimentation and cloning. While many are opposed to the Human Genome Diversity Project, Human Genome Project and diversity research currently being conducted by the Indian Health Service, a few embrace the beneficial aspects of biomedical/biogenetic research. Moreover, an increasing number of Indians see the need for and are seeking genetic counseling and other services. This paper briefly describes some of the issues associated with developing and implementing effective genetic services within Native American communities. Problems of access, perception of services, previous experience with genetics and cultural and other barriers are discussed. Recommendations also are rendered to assist health professionals in the development of services.

Journal Article↗

The Human Genome Diversity Project: past, present and future.

The Human Genome Project, in accomplishing its goal of sequencing one human genome, heralded a new era of research, a component of which is the systematic study of human genetic variation. Despite delays, the Human Genome Diversity Project has started to make progress in understanding the patterns of this variation and its causes, and also promises to provide important information for biomedical studies.

Chromosome Mapping↗

The Human Genome Diversity Project: medical benefits versus ethical concerns.

By the year 2005 the entire human genome should have been sequenced and the genes identified. But the resulting genomic sequence, although a marvelous accomplishment, will be a composite of just a handful of individuals selected at random. The Human Genome Diversity Project was proposed as a means to overcome these limitations by obtaining genetic information from many diverse populations of the world. This would give medical geneticists a handle on the variations in susceptibility to disease among different populations, as well as being of anthropological value. But would such a project risk exploiting the indigenous populations involved?

Bioethics↗