Progress, and Applications
of the Human Genome Project
Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, January 1998; 9:(1-2)
Genetic Test: The analysis of human DNA, RNA, chromosomes, proteins, and certain metabolites to detect heritable disease-related genotypes, mutations, phenotypes, or karyotypes for clinical purposes. Such purposes include predicting risk of disease, identifying carriers, establishing prenatal and clinical diagnosis or prognosis, monitoring, and screening prenatally and in newborns, but they exclude tests conducted purely for research.
The Task Force on Genetic Testing, chaired by Neil Holtzman (Johns Hopkins University), was formed in 1994 by the NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research. The working group asked the task force to review genetic testing in the United States and make recommendations to ensure the development of safe and effective genetic tests to be delivered in high-quality laboratories and used appropriately by healthcare providers and consumers. The working group took this action after considering the imperfect predictability of tests, quality of laboratories providing clinical genetic tests, lack of proven interventions for many disorders, and the questionable ability of many healthcare providers to explain genetic tests accurately and nondirectively to patients.
In 1995, the task force undertook a survey of organizations likely to be engaged in genetic testing and conducted in-depth interviews at 29 of the 463 organizations. From respondents whose organizations performed genetic tests, the task force collected informational materials distributed to providers and patients. The task force then commissioned papers on some of the widely used genetic-screening programs in the United States. Individuals, both professionals and consumers, also were asked to report their experiences with various aspects of genetic testing.
Halfway through its deliberations, the task force published interim principles, held a public hearing on them, and invited public comments. Taking these comments into consideration, the task force developed recommendations on which the public was again invited to comment. Final principles and recommendations were presented to the joint working group on May 9, 1997, and the final report was submitted in September (http://www.hopkinsmedicine.org/tfgtelsi/).
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