Scientific limitations and ethical ramifications of a non-representative human genome project: African American response

Science and Engineering Ethics

Volumn 4, Issue 2, 1998, Pages 155-170

  Jackson, Fatimah ^a  

^a UNIVERSITY OF MARYLAND   (United States)

Author keywords

African American ethics; Functional genomics; Human Genome Project; Taxonomy

Indexed keywords

AFRICAN AMERICAN; ARTICLE; ATTITUDE; BIOMEDICAL AND BEHAVIORAL RESEARCH; CAUCASIAN; CENTRE D'ETUDE DU POLYMORPHISME HUMAIN (CEPH); COMPARATIVE STUDY; CULTURAL ANTHROPOLOGY; FACTUAL DATABASE; GENETIC SCREENING; GENETIC VARIABILITY; GENETICS; GENETICS AND REPRODUCTION; HEALTH; HUMAN; HUMAN GENOME PROJECT; HUMAN RIGHTS; INTERNATIONAL COOPERATION; MANIFESTO ON GENOMIC STUDIES AMONG AFRICAN AMERICANS 1994; METHODOLOGY; MINORITY GROUP; NUCLEIC ACID DATABASE; PATIENT SELECTION; POPULATION GENETICS; RESEARCH SUBJECT; RISK; RISK ASSESSMENT; SOCIAL JUSTICE; SOCIAL PSYCHOLOGY; UNITED STATES;

BIOMEDICAL AND BEHAVIORAL RESEARCH; CENTRE D'ETUDE DU POLYMORPHISME HUMAIN (CEPH); GENETICS AND REPRODUCTION; HUMAN GENOME PROJECT; MANIFESTO ON GENOMIC STUDIES AMONG AFRICAN AMERICANS 1994;

AFRICAN AMERICANS; ATTITUDE; CULTURAL DIVERSITY; DATABASES, FACTUAL; DATABASES, NUCLEIC ACID; EUROPEAN CONTINENTAL ANCESTRY GROUP; GENETIC RESEARCH; GENETIC SCREENING; GENETICS; GENETICS, POPULATION; HEALTH; HUMAN GENOME PROJECT; HUMAN RIGHTS; HUMANS; INTERNATIONAL COOPERATION; INTERNATIONALITY; MINORITY GROUPS; PATIENT SELECTION; PREJUDICE; RESEARCH DESIGN; RESEARCH SUBJECTS; RISK; RISK ASSESSMENT; SOCIAL JUSTICE; SOCIAL VALUES; UNITED STATES; VARIATION (GENETICS);

EID: 0032034534     PISSN: 13533452     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11948-998-0046-6     Document Type: Article

References (35)

1. Lander, E.S. (1996) The new genomics: Global views on biology, Science (25 Oct) 274: 536-539.
2. Guyer, M.S. & Collins, F.S. (1995) How is the Human Genome Project doing, and what have we learned so far?, Proceedings of the National Academy of Sciences of the United States of America 92: 10841-10848.
3. Leffers, H., Dejgaard, K., Honore, B., Madsen, P., Nielsen, M.S. & Celis, J.E. (1996) cDNA expression and human two-dimensional gel protein databases: Towards integrating DNA and protein information, Electrophoresis 17(11): 1713-1719.
4. Baba, Y. (1996) Analysis of disease-causing genes and DNA-based drugs by capillary electrophoresis: Towards DNA diagnosis and gene therapy for human diseases, Journal of Chromatography 687: 271-302.
5. Dykes, C.W. (1996) Genes, disease and medicine, British Journal of Clinical Pharmacology 42: 683-695.
6. Cavalli-Sforza, L.L., Menozzi, P. & Piazza, A. (1994) The History and Geography of Human Genes, Princeton University Press: Princeton, NJ.
7. Chang, K. (1997) UM Professor Questions Diversity of the HGP, Baltimore Sun, Maryland Section, Feb. 22, pp. 1B, 3B.
8. Wills, C. (1991) Exons, Introns, and Talking Genes: The Science Behind the Human Genome Project, Harper Collins: New York, pp. 277-279.
9. Phoenix, D.D., Lybrook, S.M., Trottier, R.W., Hodgin, F.C. & Crandall, L.A. (1995) Sickle cell screening policies as portent: How will the Human Genome Project affect public sector genetic services? Journal of the National Medical Association 87: 807-812.
10. Murray, R. (1996) Clinical perspectives on human genomic testing: Contrasting sickle cell versus Tay-Sachs screening programs in the US. Paper presented, at Health Law Conference, Seton Hall Law School, Newark, NJ, November 4, 1996.
11. Weiss, K.M. (1996) Is there a paradigm shift in genetics? Lessons from the study of human diseases, Molecular Phylogenetics and Evolution 5(1):259-265
12. Tsui, L-C. (1992) The spectrum of cystic fibrosis mutations. Trends in Genetics 8: 391-398.
13. Cystic Fibrosis Genetic Analysis Consortium (CFGAC) (1994) Population variation of common cystic fibrosis mutations, Human Mutation 4: 167-177.
14. Kittles, R., Perola, M., Peltonen, L., Bergen, A., Aragon, R., Virkkunen, M., Linnoila, M., Goldman, D. & Long, J. (1998) Dual origins of Finns revealed by Y-chromosome haplotype variation, American Journal of Human Genetics 62 (in press).
15. Peltonen, L., Pekkarinen, P. & Aaltonen, J. (1995) Messages from an isolate: Lessons from the Finnish gene pool, Biological Chemistry Hoppe-Seyler 376: 697-704.
16. Miklos, G.L.G. & Rubin, G.M. (1996) The role of the genome project in determining gene function: Insights from model organisms, Cell 86: 521-529.
17. Hernandez, D. & Fisher, E.M.C. (1996) Down syndrome genetics: Unraveling a multifactorial disorder. Human Molecular Genetics 5 (REV. ISSUE): 1411-1416.
18. Coughlin, S.S., Etheredge, G.D., Metayer, C., Martin, S.A., Jr. (1996) Remember Tuskegee: Public Health student knowledge of the ethical significance of the Tuskegee syphilis study., American Journal of Preventive Medicine 12: 242-246.
19. Brown, R. & Henderson, J. (1983) The mass production and distribution of HeLa cells at Tuskegee Institute 1953-1959, Journal of the History of Medicine and Allied Sciences 38:415-431.
20. Cold, M. (1986) A Conspiracy of Cells: One Woman's Immortal Legacy and the Medical Scandal it Caused, State University of NY Press: Albany.
21. Karp, L. (1976) The immortality of a cancer victim dead since 1951, Smithsonian Magazine (March), pp. 51-56.
22. Marks, J. (1995) Human Biodiversity: genes, race, and history, Aldine de Gruyter: New York, NY.
23. Jackson, F.L.C. (1997a) The taxonomic implications of the HGP, American Journal of Human Biology 9:130.
24. Jackson, F.L.C. (1997b) Correlation of geographic patterns of ecological diversity and ethnic variation in Africa: Implications for identifying gene X environment interactions and patterns of human genetic heterogeneity, Amer. Journal of Human Biology 9:12.
25. Relethford, J.H. (1996) Genetic distance can obscure population history: Problem and solution, Human Biology 68:29-44.
26. Kahn, P. (1994) An African-American diversity project, Science 266: 721.
27. Mittman, I.S. (1997) Commentary: We must all be equal partners in the new age of genetics, The Scientist (October 13) 11(20): 8.
28. Munayyer, M.F. (1997) Genetic testing and germ-line manipulation: Constructing a new language for international human rights, American University Journal of International Law and Policy 12: 687-731.
29. Rollin, B.E. (1996) Ideology, "value-free science", and animal welfare. Acta Agriculturae Scandinavica Section A Animal Science 0 (SUPPL. 27): 5-10.
30. Start, R.D., Brown, W., Bryant, R.J., Reed, M.W., Cross, S.S., Kent, G. & Underwood, J.C.E. (1996) Ownership and uses of surgical inpatients?, British Medical Journal 313: 1366-1368.
31. Clasa, J., Holoman, J., Klepanec, J. & Soltes, L. (1996) Ethics committees and achievement of good clinical practice. Therapie (Paris) 51: 369-372.
32. Gillett, C.R. (1995) Medical ethics in a multicultural context, Journal of Internal Medicine 238: 531-537.
33. Berg, K., Pettersson, U., Riis, P. & Tranoy, K.E. (1995) Genetics in democratic societies: The Nordic perspective, Clinical Genetics 48: 199-208.
34. Jackson, F. (1996) Assessing the Human Genome Project: An African American and bioanthropological critique. Paper presented at Tuskegee University Human Genome Conference, September 26, 1996.
35. Population Reference Bureau (1997) World Population Figures. Mid-Year 1997, PRB: Arlington, VA.