Scientific limitations and ethical ramifications of a non-representative human genome project: African american response [Book Review]

Science and Engineering Ethics 4 (2):155-170 (1998)
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 Human Genome Project  taxonomy  functional genomics  African American ethics
Categories (categorize this paper)
DOI 10.1007/s11948-998-0046-6
 Save to my reading list
Follow the author(s)
My bibliography
Export citation
Find it on Scholar
Edit this record
Mark as duplicate
Revision history Request removal from index
Download options
PhilPapers Archive

Upload a copy of this paper     Check publisher's policy on self-archival     Papers currently archived: 22,558
External links
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library
References found in this work BETA

Add more references

Citations of this work BETA

No citations found.

Add more citations

Similar books and articles
L. Gannett (2003). The Normal Genome in Twentieth-Century Evolutionary Thought. Studies in History and Philosophy of Science Part C 34 (1):143-185.
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.

Monthly downloads

Added to index


Total downloads

22 ( #186,681 of 1,938,440 )

Recent downloads (6 months)

8 ( #68,070 of 1,938,440 )

How can I increase my downloads?

My notes
Sign in to use this feature

Start a new thread
There  are no threads in this forum
Nothing in this forum yet.