The Human Genome Project: How Private Sector Developments Affect the Government Program [Hearing Charter; Statement of Dr. Ari Patrinos, Associate Director, Office of Biological and Environmental Research, Office of Energy Research, Department of Energy; Statement of Dr. J. Craig Venter, President and Director, The Institute for Genomic Research; Statement of Dr. Francis S. Collins, Director, National Human Genome Research Institute; Statement of Dr. David J. Galas, President and Chief Scientific Officer, Chiroscience R & D Inc.; Testimony of Dr. Maynard V. Olson]
Author(s)United States. Congress. House. Committee on Science. Subcommittee on Energy and Environment
Human Genome Project
Economics of Health Care
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Indigenous Peoples and the Morality of the Human Genome Diversity ProjectDodson, Michael; Williamson, Robert (2015-05-05)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.
New Goals for the U.S. Human Genome Project: 1998-2003Collins, Francis S.; Patrinos, Ari; Jordan, Elke; Chakravarti, Aravinda; Gesteland, Raymond; Walters, LeRoy (2015-05-05)The Human Genome Project has successfully completed all the major goals in its current 5-year plan, covering the period 1993-98. A new plan, for 1998-2003, is presented, in which human DNA sequencing will be the major emphasis. An ambitious schedule has been set to complete the full sequence by the end of 2003, 2 years ahead of previous projections. In the course of completing the sequence, a "working draft" of the human sequence will be produced by the end of 2001. The plan also includes goals for sequencing technology development; for studying human genome sequence variation; for developing technology for functional genomics; for completing the sequence of Caenorhabditis elegans and Drosophila melanogaster and starting the mouse genome; for studying the ethical, legal, and social implications of genome research; for bioinformatics and computational studies; and for training of genome scientists.
Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically UselessJuengst, Eric T. (2015-05-05)Some argue that human groups have a stake in the outcome of population-genomics research and that the decision to participate in such research should therefore be subject to group permission. It is not possible, however, to obtain prior group permission, because the actual human groups under study, human demes, are unidentifiable before research begins. Moreover, they lack moral standing. If identifiable social groups with moral standing are used as proxies for demes, group approval could be sought, but at the expense of unfairly exposing these surrogates to risks from which prior group approval is powerless to protect them. Unless population genomics can proceed without targeting socially defined groups, or can find other ways of protecting them, it may fall to individuals to protect the interests of the groups they care about, and to scientists to warn their subjects of the need to do so.