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The public must decide whether genetic screening is ethical

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Decisions about whether prenatal screening is ethical should come from the public, not research ethics committees, argues a study that has shown that UK committees’ opinions vary on screening for Down’s syndrome. The study raises ethical questions about genetic testing in general, which need to be debated publicly before the advent of screening tests made possible by the Human Genome Project, says its author.

Among 77 members of 28 research ethics committees screening was strongly supported as ethical when Down’s syndrome was simply described as a “serious condition with no risk of abortion to unaffected fetuses” but less so for a clinical description (72% v 44%). Only 21% and 14% of them respectively, thought that screening was ethical at current rates of spontaneous abortion—one aborted unaffected fetus for every two affected fetuses identified. Support was strong for screening for a serious condition to permit prompt treatment at birth versus screening for undesirable appearance—red hair and freckles—at the other end of the range (94% v 10%). Responses for screening and termination for a condition with a poor life expectancy were equivocal and support was minimal for mildly (6%) or severely reduced IQ (21%).

This study sought replies of members of 40 randomly chosen UK ethics committees to a questionnaire covering four scenarios: potentially embarrassing traits; cystic fibrosis and premature child death; type 2 diabetes and premature adult death; and Down’s syndrome.

This study coincides with the National Screening Committee’s harmonisation of screening standards for Down’s syndrome, which will extend screening.