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Ethics of antenatal screening for Down’s syndrome

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Anyone who has spent more than a few years in medicine will be able to reflect on how views of what is or is not ethical have changed over time. Some actions are so clearly wrong that they are universally condemned but there are others over which reasonable people can and do disagree. It may be impossible to reach a consensus, so how should we proceed?

The National Screening Committee of the Department of Health is in the process of developing national standards for antenatal screening for Down’s syndrome. It is proposed to extend the offer of screening to all women and to define acceptable false-positive rates, test sensitivity, and risk thresholds. But not everybody agrees that screening for Down’s syndrome should be done at all. A survey of members of UK research ethics committees (Journal of Clinical Pathology 2003;56:268–70) has shown that views differ considerably and may be influenced by information presented.

Questionnaires were sent to 40 research ethics committees and replies were received from 77 members of 28 committees. Respondents were presented with 19 broadly described examples of antenatal screening and asked to grade them as ethical, unethical, or intermediate (“don’t know”). Almost all (73/77) considered it ethical to screen for a life-threatening condition to allow neonatal treatment. A worrying few (5/76, not all respondents replied to all 19 questions) thought that screening for red hair and freckles (with a view to termination) was acceptable and another three were undecided. Most (66/77) thought it unethical to screen for a condition expected to reduce life expectancy by 10 years (the author had in mind type 2 diabetes) but opinion was more equally divided (30 for or undecided, 39 against) when the expected reduction in life expectancy was 50 years (cystic fibrosis). Asked about screening for conditions associated with slight, moderate, or severe lowering of educational potential most (72, 70, and 61 of 77) thought it unethical. When Down’s syndrome was described simply as a “a serious condition” 43/77 considered screening ethical but when told about severe learning difficulty, possible heart defects, and slight reduction in life expectancy only 7 considered it ethical. Warning about the possibility of abortion of unaffected fetuses considerably increased the proportion of respondents who considered screening unethical. Consideration of the costs of screening had relatively little effect.

Members of research ethics committees may not be representative of society as a whole and nonrespondents might have differed from respondents but the results suggest little acceptance of screening and termination for conditions associated purely with intellectual impairment of any degree of severity. In order for opinion to be of maximum value it should be well informed; surveys without the provision of substantial, accurate, and unbiased information may identify only prejudice on either side of the issue. That around 70% of women take up screening for Down’s syndrome might point to its acceptability to the majority but there may be uncertainty about the extent of truly informed consent.

Inevitably the subject of termination of pregnancy engenders polarisation of opinion. Indeed, whether information on this subject can be completely unbiased might be doubted. Nevertheless decisions about future policy will have to be made and the more informed and consensual they are the better.