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Human Genome Project

Ethical Issues

From the very beginning of the Human Genome Project, many from both the scientific and public sector have been concerned with ethical issues raised by the research. These issues include preserving the confidentiality of an individual's DNA information and avoiding the stigmatization of individuals who carry certain genes. Some fear that insurers will deny coverage for "preexisting" conditions to people carrying a gene that predisposes them to particular diseases, or that employers might start demanding genetic testing of job applicants.

There are also concerns that prenatal genetic testing could lead to genetic manipulation or a decision to abort based on undesirable traits disclosed by the tests. In addition, some raise concerns that a full knowledge of the human genome could raise profound psychological issues. For example, individuals who know that they carry detrimental genes may find the knowledge to be too great a burden to bear. All of these ethical issues will ultimately have to be addressed by society as a whole.

Ralph R. Meyer

Bibliography

Collins, Francis S., and Karin G. Jegalian. "Deciphering the Code of Life." Scientific American 281, 6 (1999): 86-91.

Cook-Deegan, Robert. The Gene Wars: Science, Politics and the Human Genome Project. New York: Norton, 1994.

Davies, Kevin. Cracking the Genome: Inside the Race to Unlock Human DNA. New York: Free Press, 2001.

Ezzell, Carol. "Special Report: Beyond the Human Genome Project." Scientific American 283, no. 1 (2000): 64-69.

Kevles, Daniel J., and Leroy Hood, eds. The Code of Codes: Scientific and Social Issues in the Human Genome Project. Cambridge, MA: Harvard University Press, 1992.

Koshland, Daniel E. Jr. "Sequences and Consequences of the Human Genome." Science 246 (1989): 189.

Nature. "The Human Genome." Special Issue 409 (Feb. 15, 2001): 860-921.

Science. "The Human Genome." Special Issue 291 (Feb. 16, 2001): 1145-1434.

Shostak, Stanley. Evolution of Sameness and Difference. Perspectives on the Human Genome Project. Amsterdam: Harwood Academic Publishers, 1999.

Sloan, Phillip R., ed. Controlling Our Destinies: Historical, Philosophical, Ethical, and Theological Perspectives on the Human Genome Project. South Bend, IN: Notre Dame Press, 2000.

Watson, James D., and Robert M. Cook-Deegan. "Origins of the Human Genome Project." FASEB Journal 5 (1991): 8-11.

In 2002 Craig Venter announced that Celera had sequenced his personal genome, not a composite as originally claimed.

Additional topics

Medicine EncyclopediaGenetics in Medicine - Part 2Human Genome Project - Origins Of The Human Genome Project, Competition Between The Public And Private Sectors, Progress In The Human Genome Project