News & CommentGenetics

ELSI's Cystic Fibrosis Experiment

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Science  25 Oct 1996:
Vol. 274, Issue 5287, pp. 489
DOI: 10.1126/science.274.5287.489


When a group of biologists identified a genetic defect that causes cystic fibrosis in 1989, many observers warned of a tidal wave of genetic testing by doctors too ill-informed or hurried to provide good counseling. The tidal wave never struck, and a set of studies funded by the program in Ethical, Legal, and Social Implications (ELSI) at the National Center for Human Genome Research suggests it's not about to. Although the early results indicate that worries about counseling and informed consent were justified, the investigators also found that people offered the test don't take it unless they are already planning to have children who may be affected.