Scientific limitations and ethical ramifications of a non-representative human genome project: African american response
Science and Engineering Ethics 4 (2):155-170 (1998)
|Abstract||The Human Genome Project (HGP) represents a massive merging of science and technology in the name of all humanity. While the disease aspects of HGP-generated data have received the greatest publicity and are the strongest rationale for the project, it should be remembered that the HGP has, as its goal the sequencing of all 100,000 human genes and the accurate depiction of the ancestral and functional relationships among these genes. The HGP will thus be constructing the molecular taxonomic norm for humanity. Currently the HGP genomic baseline is almost exclusively skewed toward North Atlantic European lineages through the extensive use of the Centre d’Études du Polymorphisme Humaine (CEPH) data set. More recently, the HGP has shifted to the use of volunteer donors since adequate informed consent had not been secured from the CEPH families. No evidence exists that either the CEPH families or the current volunteers are the most appropriate demographic or evolutionary lineages for the functional genomic studies that will guide production of new DNA based drugs, targeted therapeutics and gene-based diagnostics. The lack of scientific representativeness of the HGP is a serious impediment to its broad applicability. Yet this can be remedied, and five alternative sampling strategies are presented. In response to the current exclusionary design of the HGP, there is noteworthy caution and skepticism in the African American community concerning genetic studies. The Manifesto on Genomic Studies Among African Americans reflects both a desire to be systematically included in federally funded genomic studies and a desire to maintain some control over the interpretation and application of research results. Representative sampling in the HGP is seen as an international human rights issue with domestic ethical implications.|
|Keywords||No keywords specified (fix it)|
|Through your library||Configure|
Similar books and articles
Rachel A. Ankeny (2001). Model Organisms as Models: Understanding the 'Lingua Franca' of the Human Genome Project. Proceedings of the Philosophy of Science Association 2001 (3):S251-.
Robin O. Andreasen & Milo J. Aukerman (2002). The Human Genome Project: A Reply to Rosenberg. Biology and Philosophy 17 (5).
Herman T. Tavani (2004). Genomic Research and Data-Mining Technology: Implications for Personal Privacy and Informed Consent. Ethics and Information Technology 6 (1):15-28.
Neil I. Wiener & David L. Wiesenthal (1999). Ethical Questions in the Age of the New Eugenics. Science and Engineering Ethics 5 (3):383-394.
Hub Zwart (2010). The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers and the Ethics of Excellence. Journal of Bioethical Inquiry 7 (3):299-312.
Antonio Marturano & Ruth Chadwick (2004). How the Role of Computing is Driving New Genetics' Public Policy. Ethics and Information Technology 6 (1):43-53.
L. Gannett (2003). The Normal Genome in Twentieth-Century Evolutionary Thought. Studies in History and Philosophy of Science Part C 34 (1):143-185.
Frank C. Dukepoo (1998). Commentary on “Scientific Limitations and Ethical Ramifications of a Non-Representative Human Genome Project: African American Responses” (F. Jackson). Science and Engineering Ethics 4 (2):171-180.
Philip Kitcher (1994). Who's Afraid of the Human Genome Project? PSA: Proceedings of the Biennial Meeting of the Philosophy of Science Association 1994:313 - 321.
Marga Vicedo (1992). The Human Genome Project: Towards an Analysis of the Empirical, Ethical, and Conceptual Issues Involved. Biology and Philosophy 7 (3):255-278.
Added to index2009-01-28
Total downloads4 ( #178,586 of 549,047 )
Recent downloads (6 months)1 ( #63,185 of 549,047 )
How can I increase my downloads?