| Galton Institute Home Page | September 1996 Newsletter Contents | Newsletter Index |
The discovery of the gene for cystic fibrosis (CF) led to the rapid development of carrier detection tests for the disorder, it being assumed that many people would wish to be tested. Not everyone was convinced that avoiding the birth of a child with CF was desirable partly because of improved treatment and partly because some believed that a cure for the disorder would be found in the near future. A complicating factor is that the carrier-detection rate is at best only 85 to 90 per cent among people of north European origin and lower in other populations. False-negative results are, therefore, very likely. However, it was confidently predicted that the introduction of CF carrier screening would overwhelm the laboratories.
This prediction was confounded when free CF carrier screening was offered to non-pregnant adults in stable relationships in a pilot study in Nashville, USA (Clayton et al., 1996). Only 179 individuals, far less than one per cent of those contacted in various ways, decided to accept the offer. Puzzled by this lack of interest the researchers used questionnaires to discover the reason people would give for not volunteering to be tested.
A major reason for people not taking up the offer even though it was free was the fear that, if the result was positive, they would risk losing their health insurance. This reason was most often given by those who were better educated and who, in general, were not opposed to genetic testing. Some people were opposed to abortion and so, presumably, saw no good reason to know in advance if they might have a child with CF.
Perhaps the most remarkable reason, given by about one in six of those asked, was that "genetic tests are meddling in God’s plan." The typical person with this belief is a young, less well educated female who is also opposed to abortion. Some of them believed that genetic tests should never be available. Since those filling in the questionnaires were all visiting clinics or medical centres it is hard to understand why they thought God’s plan would be upset by genetic tests but not by other medical procedures.
Overall the study showed a lack of popular demand for screening for CF and the authors suggest carrier detection tests for this disorder should only be offered to those with a family history of it. It also revealed widespread ignorance and prejudice and a hard core of people opposed to genetic testing on religious grounds. Extrapolation of this American study to the UK cannot be exact since the NHS will presumably not discriminate against CF carriers. However, the anti-abortion lobby exists here and believes, apparently, that God’s plan includes bringing handicapped children into the world. Perhaps the Pharisee when passing by on the other side (Luke, 10:30) believed being attacked by thieves was part of God’s plan.
Reference: Clayton, E.W. et al (1996), American Journal of Human Genetics, vol. 58, p. 617
John Timson